Justin Maharowski in Dunbar, PA...
The best foot I have found that requires practically no attention from your Certified Prosthetist is the RENEGADE manufactured by FREEDOM INNOVATIONS.
I have used this incredible foot for nearly 3 years submitting it to all kinds of abuse.
It does not break down, allows walking on uneven surfaces, inclined planes and sand and is comfortable!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 03, 2010 at 03:32:24 (GMT)
I am a BTK amputee, left leg.
I recently lost my foot in December 2009 in a train accident.
I am an active 31 year old and have three kids 6, 2, and another one due in October, that keep me busy.
I am having trouble finding a foot that can keep up with me. I've gone through 2 foot shells, 8 liners, and an ankle in just six months.
I'm not having a lot of pain other than occasional phantom pain, and discomfort when I don't add enough socks around my stump.
Does anyone know of a foot to talk to my prosthetist about that is tough enough for me?
I've searched the internet but get frustrated staring at this screen all day. Thank you for your time and hope to get some emails if you have any advice.
Justin Maharowski <cornbreadandbeans@hotmail.com>
Dunbar, PA USA - Friday, September 03, 2010 at 03:23:33 (GMT)
Amputees Express Concerns About Radiation, Privacy, To TSA
Many Using Prosthetic Devices Say X-rays Are A Concern
Airline travel has long since lost its glamor, but for some, the screening process is one that is a cause for particular concern.
Earlier this summer, the Amputee Coalition of America called on TSA to "clean up its act" when it comes to screening people who have lost a limb and use a prosthetic device. The group says it conducted a survey which revealed that many amputees feel they have been subjected to "inconsistent, unfair, abusive, and often embarrassing screenings" at airports.
USA Today reports that one of the biggest concerns of amputees is the CastScope backscatter X-ray machine which can be used to detect a potential threat in a prosthetic device. Many amputees say the are concerned about radiation from the devices, particularly if they are frequent flyers, and that many of the operators are improperly trained in its use. The CastScope does not scan the entire body, but focuses on the area with a prosthetic, cast or bandage which TSA says could hide a weapon.
Tek84, the company which makes the device, says it uses a very low dose of radiation for its scans, far lower than the dose limits set forth by the American National Standards Institute. But doctor Jeffery Cain, who has had both legs amputated below the knee, says he receives the equivalent of 20 X-rays when he is scanned by the CastScope. Cain, a board member of the Amputee Coalition, says traveling just 5 times a year could exceed the limit considered safe for X-rays.
Tek84 and TSA contend that it would take 2,500 X-rays to reach the limit, and that the CastScope delivers lest than 1 microrem of radiation per scan. But while passengers who do not wish to submit to the full body scan can be searched in other ways, TSA says the CastScope is the only method available to screen prosthetic devices.
Some amputees have complained that they have been treated like "third class citizens" and even missed flights because no one was available who knew how to operate the CastScope. TSA's new administrator, John Pistole, says he is reviewing those policies. TSA said it spent $1.7 million on 35 of the devices in 2007, and that they are deployed in 11 airports around the country. The agency says there are no plans to purchase additional CastScopes.
FMI: www.tsa.gov, www.amputee-coalition.org
Dan Sorkin <DanSorkin@gmail.com>
San Francisco , CA USA - Thursday, August 26, 2010 at 18:16:11 (GMT)
Hi
I was taking a flight and while i didn't have to use it I was offered the chance to use the Castscope Machine...but opted for a hand wand and patdown search......
What is your opinion of the Castscope Machine??
John Ackroyd <CrowWalker56@aol.com >
Big Rapids, MI USA - Thursday, August 26, 2010 at 12:28:42 (GMT)
CASTING CALL FOR AMPUTEE
Dear Dan,
I am a casting director working on a TV series in Charlotte, NC. We have an episode shooting this Thursday that involves a caucasian male amputee and I was hoping you might be able to help spread the word.
The show airs on a major cable network and follows an ex-cop turned PI as he fights crime. It is a drama and we use non-union actors based in the south.
Please let me know if you have any questions.
Thanks!
Meg Morman
Casting Director
Seeking Male Amputee
for TV Series shooting Charlotte, NC
TV Series in its 2nd season on a major cable network is shooting in Charlotte and looking for a
Caucasian male amputee for a guest lead on the show.
You must be local to the south
You will be the lead in one episode and be paid $250 per day
This is a speaking role but no acting experience is necessary
Please email for more information.
Send photo, name & contact number
greenvillecasting@gmail.com
Meg Morman <greenvillecasting@gmail.com>
Charlotte , NC USA - Tuesday, August 24, 2010 at 19:41:00 (GMT)
I have been a Knee Disarticulation amp since 1971.
Since this is primarily a knee-bearing weight type of amp, the various traumas of pressure and skin abrasion have to be guarded against.
For me the best way to accomplish this is by the use of distal pads.
Here's the question:
Have any KD amps out there found a source for durable, tough, soft, thick, gel-filled distal stump pads?
I cannot find a source.
Have used various types of foam pads (don't work well, they compress too much), and am currently using a computer mouse pad that's about 3x5. It's breaking down though because it obviously wasn't intended for such abuse, and the squishy jelly-like stuff is being forced out.
Thanks in advance, guys, for any advice.
Jim Sutton <soma9x9@gmail.com>
USA - Monday, August 09, 2010 at 13:05:19 (GMT)
I'm a 65 year old male in very good shape and very active.
Due to PAD, it appears that I will have to have a BTK amputation of the left leg.
I currently have a desk job, but I also have the opportunity to move around on occasion...this job is mainly on the phone and computer in a hospital setting.
Assuming my recovery goes well, what should I anticipate for a return to work (i.e. 2 months?) and what are the milestones (i.e. about x wks in hospital, about y weeks.....etc).
Thanks for any guidance you may provide.
wayne matthews <wiffum3@hotmail.com>
Middletown, MD USA - Sunday, August 08, 2010 at 12:19:29 (GMT)
It does take 6 months to a year for the stump to stop shrinking. It does make sense that the size of the socket will have to be adjusted during this period as well.
Usually if the socket is PERFECTLY fitted you need only to keep adding thicker & thicker stump socks until the swelling is completely gone.
Usually at that time a completely new socket is created for you.
About the pain.
All amputees are different. Some experience intense Phantom Pain...some do not.
If the pain is caused by an ill fitting socket your Certified Prosthetist should make minor adjustments until you achieve a perfect fit.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 04, 2010 at 21:58:33 (GMT)
Hi...
Please respond.
I had my amputation in August of 2009. They (Yankee Bionics)have been working with me exclusively since then.
I'm having pain/discomfort, not all the time but some days like this morning it was about an 8 out of 10. But later in the day, it is about 2-3 level.
They keep telling me, "I'm still a new amputee" and this fitting of the socket will go on for the next 6 mo. to a year."
Is this normal what I'm going thru?
Should I just tough it out ?
And accxcept that there are just good days and bad days at this stage?
Thanks in advance.
Tim Serra <timserra@sssnet.com>
Massillon, Ohio USA - Wednesday, August 04, 2010 at 21:46:51 (GMT)
Wheelchair Accessible Apt. for Rent - Sacramento, CA
I am the owner of a small apartment complex (8 units) in Sacramento, CA.
I currently have two (2)wheelchair accessible, 2bed/1ba apts. for rent.
I would like to advertise these units to individuals or families who could benefit from the accessibility status.
If you know of organizations or individuals who might be interested in these units, PLEASE let me know.
Thank you for any assistance you can provide.
(916) 551-1208
S. Brown <pleokin@aol.com>
USA - Wednesday, July 28, 2010 at 12:39:53 (GMT)
My husband is an amputee AND he's also a Certified Prosthetist of 30+ years. He works for a small, independent practice in Mountain View, CA, and I'm always on the lookout for him to find ways to stay active in the amputee community while at the same time, getting the word out about his services.
Being an amputee since the age of 4, he's become a craftsman at what he does and he finds his passion and reward in helping other amputees, especially the ones new to a life without a limb. He's been there.
How would I go about getting him listed on your links page as a source for excellence (and understanding) in the latest prosthetic advancements?
Thanks so much. And please ... Sign me up for your newsletter!
Sincerely,
209-614-9135
Joey Huestis <jhuestis@sbcglobal.net>
Mountain View, CA USA - Friday, July 23, 2010 at 13:02:08 (GMT)
Dear Robert,
How disabled are you at 38? I am able to do most things, but I cannot be as physical as I was before.
What did you do before your near fatal accident that took all 5 toes off your right foot?
I installed granite and tile
What can't you do now that you did before losing your toes?
I can do most things, just not as fast. I also suffered a brain injury during the accident and that gets me a bit confused at times.
Who's fault was the accident?
They say it was my fault because I was behind the truck.
How did it happen?
I was driving on the freeway at 7am going about 70MPH, there was a truck hauling steel in front of me, but it was only going 35 MPH because it was slowing down. It was too late to notice and I ended up hitting the back end of the truck. I was trapped for 1 1/2 hours. The engine caught fire. They had to cut me out of my truck. I suffered a TBI and have since gained most of my memory back. I sometimes get frustrated when I try to do too many things at once.
Were you the driver?
I was the driver
What school & where is it that you would earn your Bachelor's Degree?
I just enrolled in University of Phoenix, Ontario California location
A Bachelor's Degree in what?
I want to get my teaching credential to teach P.E.
Thank you!
Robert Elliott
909-241-8978
Robert Elliott <nvention@msn.com>
USA - Wednesday, July 21, 2010 at 13:26:03 (GMT)
Marc Nadell...
If I have an ill fitting prosthetic socket, one that feels uncomfortable, my Certified Prosthetist, Wayne Koniuk of San Francisco Prosthetics, rubs lip rouge on my Stump Sock, then has me place my stump in the socket and has me walk a few steps.
When the stump is removed from the socket the lip rouge leaves markings where the pressure points exist.
Then the Certified Prosthetist sand papers away the
pressure points.
Works every time to create a PERFECT FIT!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, July 19, 2010 at 22:11:30 (GMT)
I've been a BK amputee for ten years and I'm hoping to get some advise on working with the prosthetist.
I've had a number of different legs made and I'm finding it very frustrating having someone else tell me what I need and how it's going to fit.
Do other amputee's just accept the discomfort until they get use to it?
As I've gotten more educated on how they cast the stump and then shave it down so the prosthectic leg so it will be supported equally around the sides of the stump is just an eduacted guess.
I found a company that makes a pressure sensitive film that I can place inside my cast to see how my weight is distributed in the cast. I plan to share this info with the prosthetist so they can do a better job in building the next cast.
Have you heard of anyone doing this?
Marc Nadell <amskydiver2001@yahoo.com>
USA - Monday, July 19, 2010 at 22:03:07 (GMT)
I am a 44 year old hip disarticulate I have been this way since birth. i also have a deformed left hand. I am a father of 6 1 biological 5 adopted.
I have lived a very active lifestyle playing sports most of my life and breaking more legs then I could possibly count. I have worked my whole life, I even applied for and was granted the opportunity to go through the police academy in the state of Ky.
To my knowledge I am the only one with a prosthesis to ever do this in Ky.
Well I passed.
I served as a Ky Vehicle Enforcement Officer for over 15 years.
As the years has passed I found walking had gotten so difficult that I no longer felt safe or felt that I could do my job at a level that a non handicapped officer could do. I applied for my state disabillity retirement and was approved after 2 appeals.
My artificial leg was never uncomfortable however I had cronic fatigue in my lower body. Probally didnt help that I wore a gunbelt that weighed approx 10 lbs around my waist for so long.
I have never applied for federal disability but due to the income being only 2000.00 gross less a month. I live in a rural area and opportunities for a man my age to to start over and make anywhere close to the same income that I gave up is non existant.
My cronic lower fatigue has not improved in the past 2 years. I am now starting to pay for my long term crutch use with shoulder pain.
Folks I need some advice. Please shoot me an email tell me what I am doing right or what I am doing wrong.
Added information I am from the northern part of Ky. and I only have a high school education. College was not required at the time I went through the police academy.
Thanks for reading.
Jamie perkins <jamie.perkins12@yahoo.com>
Kentucky USA - Friday, July 16, 2010 at 13:33:51 (GMT)
birdymom61...
The Physical Therapists at your Hospital are a rare collections of MORONS!
Physical Therapy should begin IMMEDIATELY on your Uncle.
They simply proceed with the therapy while your Uncle wears his Prosthetic Limbs during the therapy.
Dan Sorkin <DanSorkin@gmail.com>
SFO, CA USA - Wednesday, July 14, 2010 at 21:56:50 (GMT)
I came upon your website when researching for a family member and thought maybe you could give me some information.
My 64 year old diabetic uncle, a double amputee below the knee, recently fell off a ladder and broke his hip. He suffered for three days before surgery could be done.(hip replacement)
I am just finding out that neither his surgeon or physical therapist have worked on a case like this and so now my uncle is still in a hospital bed in Kalamazoo , Michigan and they are not proceeding with therapy because they have never had a case like this before.
Do you know anyone who has had a situation such as this of do you know of a physical therapy group who specializes in this area?
Thanks
birdymom61 <birdymom61@aol.com>
USA - Wednesday, July 14, 2010 at 21:51:33 (GMT)
Robert Elliott
How disabled are you at 38?
What did you do before your near fatal accident that took all 5 toes off your right foot?
What can't you do now that you did before losing your toes?
Who's fault was the accident?
How did it happen?
Were you the driver?
What school & where is it that you would earn your Bachelor's Degree?
A Bachelor's Degree in what?
Inquiring cheerful cripples like me want to know.
Happy Independence Day!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, July 08, 2010 at 19:50:15 (GMT)
My name is Robert Elliott.
I am 38 years old and was in a near fatal car accident in 2005 that took all 5 toes of my right foot.
I am going to go back to school to earn a bachelor's degree, but I really need help finding scholarships or grants that are for the disabled. Can you help?
Thank you so much,
909-241-9398
Robert Elliot <nvention@msn.com>
USA - Thursday, July 08, 2010 at 19:44:57 (GMT)
Hi, my name is Birgit,
I'm a 44 year old woman, living in upstate NY. I'm writing to you in hopes of getting suggestions for wound care.
I was in a motorcycle accident on May 20, 2009 and lost my leg. It was a traumatic amputation. I needed 2 skingraft surgeries, in order for them to save my knee.
After I was fitted for my first prosthesis, things were wonderful - finally I had my independence back.
Well that didn't last long, because I ended up with sores/blisters on the bottom of my "shorty". I didn't even wear my leg all the time, started off with an hour a day and slowly increased the time I wore it. It took months to heal and I'm finally in my second prosthesis.
Sadly I developed another blood blister and was forced to go back on crutches. Since my "shorty" is all scared and horrible looking I know it will take time to heal, but what can I do in the meantime to rush the process.
What kind of ointment, bandage, or 'magical potion' can I use??
Thanks for reading my mail and I'll be waiting patiently for suggestions.
Birgit Aiello <birgitaiello@yahoo.com>
New York USA - Sunday, July 04, 2010 at 17:49:06 (GMT)
Dear Lisa,
Stumps 'R Us Member B/K amputee Roberta MacDonald is 93 and joins us regularly for our annual bowling party, San Francisco Bay sailing outings and Bar BQs. There is no reason your mother could not do the same. Roberta decided after a time to use a wheel chair in addition to her prosthetic device. She wears the prosthetic leg all day removing it only to sleep & bathe.
At 83 I have a B/K amputation but mine was at age 43. At 83 I am a current Flight instructor, walk, dance and do pretty much everything I did before losing the leg.
To support your mother through this it is important to find an amputee support group like Stumps 'R Us. If you do not live in the San Francisco Bay Area I would contact the ACA (Amputee Coalition of America). They have a web site and an 800 telephone number and can recommend a support group.
Usually 6 to 8 weeks after amputation she can get back to the life she had before. It takes about a year for the stump to stop shrinking and assume its final size. The Orthopedic Surgeon & the Certified Prosthetist plus the rehab people will guide your mother through what she has to do to complete the rehab process.
She should not need skilled nursing at home. She will need assistance to & from rehab.
If she does not intend to do a lot of walking the Symes Procedure is less invasive. Most of the amputees I know of elected to have a B/K operation after having had the Symes. They found it easier to walk with less pain with the B/K procedure. A B/K is what I had done & I never regretted it.
For a B/K amputation the foot I recommend is the RENEGADE by Freedom Innovation. It is the one I use. It requires little or no maintenance and allows easy walking on uneven surfaces. The Prosthetic Device (socket) is created by the Certified Prosthetist who fits your mother's residual limb.
If you have any other question please do not hesitate to ask.
Good luck,
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 02, 2010 at 03:40:01 (GMT)
I came across your email on the Stumps R Us site and wondered if you would be up to holding the hand of the daughter of someone about to have their leg amputated?
My Mom is 84 and has Stage 4 ulcers on her foot. Now the gangrene has set in and they have to remove her leg. She fell and broke her ankle and then the sores began. We have tried for months and months in wound care and they say there is nothing more they can do.
We have been the "ask the physician" route before and got nothing but lies. I would like to hear the answers from someone who has done this and who is near Mom's age. So my questions are these:
1. What do I do to support her through this? Make this easier on her? She is not very strong and will probably not be able to walk. She had hip replacement on the opposite leg just this January and never really completed the rehab she should have. She is scared to death, as am I.
2. How long will it take until she can get back to whatever life she has left? Meaning...going home with help and being able to transfer to bed, wheelchair, shower chair...maybe taking short trips to a Casino or shopping?
3. Will she need a skilled nurse to help her in her home? I read about having to wrap the stump and things she cannot do on her own.
4. Should we ask for the BK if they are going to only do the Symes?
5. Since we both live in California, can you suggest any services she might need? Is one prosthesis manufacturer better than another? One type of prosthesis better than another?
6. How long is the average rehab?
I would appreciate any sage advice you can give us. This is very traumatic for all involved.
Thank you,
Lisa <LakotaLisa@aol.com>
USA - Friday, July 02, 2010 at 03:36:18 (GMT)
Hi, my name is Danielle and I am 23 year old Symes amputee, following two tumors in my left foot.
For the first three to four years I readjusted wonderfully. The amputation of my left foot eliminated the pain I had been dealing with since the age of 7 and my prosthetic was cosmetically appealing and allowed me to exercise.
However in the past two years I have found myself in a significant amount of pain. Shooting pain from my stump to my knee wakes me up on a nightly basis right now and I also have adjusted to walking with pain daily.
This is quite frustrating since I lived the first four years as an amputee virtually pain free.
I have seen several doctors to regulate the pain but there has been no solution.
Recently, I saw a new orthopedic surgeon who made a strong recommendation...have revision surgery to move from Symes to Below the Knee.
Because I have already had calf atrophy from the initial amputation, this doctor believes I will have a quicker recovery than normal. He also will put me in a temporary prosthetic the day of the surgery so I can start to put light pressure on it within a few days.
I am active and healthy and am especially interested in the prosthetic technology offered to BK amputees (in comparison to Symes). I do worry however about the possibility of phantom pain (never have experienced this) and an extremely tough recovery.
I wonder if there is anyone out there who has gone from a Symes to BK or who knows of anyone because I would really benefit from speaking to someone who has gone through this. Any thoughts on this are greatly appreciated!
Danielle McLaughlin
Administrative Assistant
Assistant to the Directors
School of International Relations
University of Southern California
Danielle McLaughlin <daniellejmclaughlin@gmail.com>
Los Angeles, CA USA - Tuesday, June 29, 2010 at 22:13:40 (GMT)
Dan,
Thanks for getting back to me.
I understand the procedure, as much as I can without having it, but what I'm looking for are some of the conditions that would qualify someone to have the revision.
I was hoping to get some background in that area so I don't waste my time or a doctor's time. I also realize that no one, except an ortho, is going to be able to say "Yes, Dennis, you qualify!".
Just trying to obtain knowledge and understanding, because knowledge is power, especially when dealing with insurance.
One more question, how do I get my question posted on the guest book, so I can hear from as many sources as possible?
Thanks for your time,
Dennis
On Sat, Jun 26, 2010 at 3:13 PM, Dan Sorkin wrote:
6.26.2010
Dear Dennis,
Please navigate back to the Stumps 'R Us web site www.stumps.org and click on ERTL Procedure. The surgical procedure is spelled out there in detail. I suggest you contact Dr. William Ertl directly in Oklahoma City
William-Ertl@ouhsc.edu for a listing of Orthopedic Surgeons that have been trained and perform the ERTL Procedure if you can't make the trip to Oklahoma City from Flagstaff, AZ for the procedure.
I fully agree that the Symes Amputation is a cruel procedure that in many cases exacerbates the pain & diminished utility of the remaining limb.
Several members of Stumps 'R Us have had the ERTL Procedure and are practically pain free and now dance, play golf, hike and do everything the "normal" two leg adult is capable.
Good luck & please keep me in your decision loop.
Dan Sorkin
www.stumps.org
Chief Stump
Socialism only works in two places:
Heaven where they don't need it
and hell where they already have it.
...ronald reagan
From: Dennis Taylor [mailto:den.taylor@gmail.com]
Sent: Saturday, June 26, 2010 12:57 PM
To: DanSorkin@gmail.com
Subject: Qualification for the ERTL procedure
Hello, my name is Dennis.
I am a Syme's amputee, and have been since 1996, and suffer form serious chronic pain and am trying to gather as much knowledge as I can about revision amputations.
I have seen pain specialists and they seem to want to try any and all treatments to keep one from having a revision amputation. I do not see this as a long term solution to my problem, because I don't want to be on pain medication for the rest of my life, I don't fancy the idea of putting anything in or around my spine(especially something that blocks feeling), and nothing has seemed to work yet.
I am in total agreement with Brian Kroll, and I believe that that they should not allow any Syme's amputations to happen, I believe it is cruel and inhuman.
I have been trying to find as much information on the Ertl procedure, and all I can seem to find is really basic information on the procedure itself. What I am looking for is what are the qualifications to have the procedure, what do I need to do to convince my doctors that this would be a good thing for me to have. For me, it is about being as pain free as possible as well as having a higher quality of life. I have a 6 year old, I love to hike and be outdoors, and it is getting to the point that I just can't do any of this anymore.
If anyone has any information or can point me in a useful direction, I would greatly appreciate.
Dennis Taylor
Flagstaff, AZ USA
Dennis
Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful. -
Buddha
Dennis Taylor <den.taylor@gmail.com>
Flagstaff, Arizona USA - Monday, June 28, 2010 at 01:19:25 (GMT)
I am writing today to hopefully obtain some information for my uncle.
He is a double leg amputee, not a veteran, and needs assistance to get his small bathroom made handicap accessible.
The home was built over 30 years ago and at that time, he was healthy.
He and his wife both live off social security and pension. They fall just over the limit for
assistance for government benefits, yet, with doctor bill and utilities they live well in poverty level.
Do you know of any organization that will assist in helping them with a handicap accessible bath?
Thank you
Jolean Powers <njpowers@setel.com>
USA - Thursday, June 10, 2010 at 19:34:47 (GMT)
I'm a 48 yr old female below elbow amputee in Michigan. I have about 1/3 of my forearm left. My amputation was from a severe dog bite. There was a lot of damage from the bite + when they tried to graft in veins, one kinked, so they had to re-do it. By the time they got done + started unclamping things, there was clotting + they couldn't get good blood flow back to the hand. This happened on 9/5/07 and my amputation was on 9/11/07.
Yup, Sept 11.
Several people commented that it was too bad it was on such a famous day since it was bound to be a reminder every year. I just told them that it was a great reminder that a lot worse things happen in this world.
I was a police sergeant at the time this happened + my goal was to go back to working the road. I was very lucky that there was an inside job available while I recuperated. At the beginning of the year, both the administration + the supervisors union came to me to ask if I was going to retire when my 25 years was up in March. Since they were planning lay-offs + my myoelectric greifer hook was still not reliable enough for my standards (to be able to grab + hold on to people), I opted to retire in March. I just could not defend someone getting laid off so I could try to do something that was a long way off.
I go to the Rehabilitation Institute of Chicago for my prosthetic because I was lucky enough to get in to Dr Todd Kuiken for my prosthetic. Since then, I have racked up numerous breaks to my greifer hook. I'm a little hard on it due to being very active at the gym. I can do push-ups, assisted pull-ups + dips, burpees, and everything else my trainer comes up w/ in boot camp classes. They have been great at RIC + always tell me they would rather have me break it doing things w/ it then just throwing it in a closet. I have to give my trainer a lot of credit - he's had to get used to my arm flying off in class! (I sweat a lot so it gets slippery inside) He has always taken the approach w/ me that this is no different than someone coming back from shoulder or knee surgery - if I can't do something, we either adapt or substitute for the exercise. That was exactly the attitude I needed to hear from a trainer.
I first heard about your group from Dr Kuiken. He created a booklet for new amputees that was very helpful. One of the support group he listed was Stumps R Us + I loved the humor in the name! I have been able to maintain my sense of humor about my situation. Of course, I've had my down moments, but I usually get bored pretty quickly w/ feeling sorry for myself. In reading over some of your postings, it's clear that is your group's attitude also. I am planning on attending the ACA's conference in CA in August + will be going to the Peer Counselor training. When I was in the hospital, it would have been nice to have talked to an amputee to have heard about some of the things to expect. Hopefully I can provide that for new amputees in the future.
Obviously, I can't meet your group in San Francisco but I'd love to get your pamphlet and see more about your group.
Mary Stevens <mstevens357@gmail.com >
Mason, MI USA - Monday, June 07, 2010 at 13:30:54 (GMT)
Brian Kroll BK vs. Symes
>
It has been quite some time since I have posted here. I’m not the expert but a few things to consider.
One I would never advocate having an amputation but given certain situations as an amputee I would definitely elect a BK over a Symes.
Dan Sorkin had mentioned the ERTH Procedure, which is a great resource and path to research. Also when it comes to prosthetics, as you know with Symes the styles of feet/components are very very limited. One style of short feet and in some cases some sort of foot orthotic for the sound leg.
With a BK the styles of prosthetic feet are endless. If running is your thing there are feet for that. If swimming is your thing there are feet for that as well or if you just want the prosthetic to walk on comfortably and live a normal functional activity level there are several styles for several functions of activity and simply put what ever your activity level can be matched by your prosthetic to accommodate YOU, not your body having to accommodate to your prosthetic.
There are more options available with a BK.
As far as complications that may arise. As with any surgery/amputation the recovery time is the worst. Surgery…2 weeks post op stitches come out than 2 weeks in a shrinker 1-month fabrication of check sockets and delivery.
Your new residual limb will take a year to fully mature and shrink down and get used to but with good sock management and a “very” good prosthetist you should be up and going in about 2-3 months from date of your surgery.
Best of luck to you and whatever choices you decide to move forward with feel free to contact me directly or indirectly thru Stumps R Us.
Joe Kennedy -Saint Petersburg Florida --RBKA --
Joe Kennedy <josephkennedy72@tampabay.rr.com>
Saint Petersburg, Florida USA - Monday, May 31, 2010 at 21:53:10 (GMT)
This is Amy with True Grit extras casting.
The photo double for one-armed Mattie has been selected. It all really came down to sizes & hair style.
We've loved meeting & getting to know such amazing talent!It was sad for us to not get to work w/so many. However, we'd love to keep you in mind for future projects.
Please note - we had a difficult time fitting people into available sizes. Our film is extremely authentic & our Costume Dept rented actual pieces from the 1800's.
The sizes were quite different in that time period. The challenge for us was fitting people into them! For example - perhaps someone had a chest & waist size that was perfect - but not tall or small enough, etc. It was extremely difficult - like an intricate puzzle.
Believe me - we adore PEOPLE.
The challenge was fitting those people into the costumes, etc - which is ultimately not our call! The Hair, Make-Up & Wardrobe Dept all had to advise, etc. Whew!
We absolutely believe that you would've been an asset to our film! It makes us sad that we were not able to utilize everyone.
Again, we'd love to keep you in mind for future castings & will let you know if anything should change on our end.
Please note - If there are changes or additions to TRUE GRIT - I send notices out thru this email first. I also do other castings around the world & would love to consider you & keep your info on file - if there is somthing else, down-the-line you'd be appropriate for. I will contact you if this is the case.
If you'd rather NOT receive notices about future castings or productions - please reply w/OPT OUT in the Subject Line. I will delete your file.
Best Regards-
True Grit Extras Casting
512-637-6775
Amy <texascasting2010@gmail.com>
Austin, Texas USA - Tuesday, May 25, 2010 at 18:15:33 (GMT)
My name is Peter Lewis.
I am going to be shooting a short film this summer and was looking to employee one amputee actor and i was wondering if there was a way to use your site as a resource.
It is a short, slightly experimental version of Peter Pan and i am specifically looking for a 30-60 year old lanky male with one hand missing.
I am in the Seattle area.
I was just wondering if there was a way to advertise this on your site and if it would be an appropriate place to do so.
This would be a very low-paying gig for one day's work.
Thanks
Peter Lewis <peterolewis@gmail.com>
Seattle, WA USA - Friday, May 21, 2010 at 19:33:22 (GMT)
When researching the availability of rental bikes in the U.S. for people with disabilities, I came across the Stumps website.
My question is simple, but after talking to several people, I fear, there is no simple answer:
The question is: Do you know of any outlet/dealer in the US, that rents out motorcycles to people with disabilities? Or do you know, who could
provide a binding answer on legal/liability questions, as we might not need a special bike, but only an organisation or person, who would provide a one.
Reason for me asking is, that a friend and I want to travel the Route 66 in August 2010. While I have no disability my friend is a right leg amputee. He has a German driving license, and currently drives a Yamaha
with a modified brake, which he can handle with his left leg.
When speaking to the head of the German Harley-Davidson traders association, he told me that when driving in the US, it might be sufficient to have a bike equiped with an ABS. The travel agent I talked to however said, that the rental company they are working with (Eagle Rider) most probably will not allow this for liability (insurance)
reasons, especially as there are different laws in different US states.
Could you advise us, whether there is any chance at all, to turn our plan into reality, or do you know people that might help us?
Thanks in advance and best regards from Germany.
Yours
Sascha Stoltenow
Eltviller Straße 16 a
65197 Wiesbaden
Phone: 0049 172 4223439
Sascha Stoltenow <sascha_stoltenow@yahoo.com>
Wiesbaden, Germany - Tuesday, May 11, 2010 at 02:59:56 (GMT)
Hi...
Curious to know whether other amputees have heard that Kaiser does not cover the cost of test sockets?
Please let me know what others have done in this situation.
Thanks
Jamie Kwan <jamie@SES-Ins.COM>
CA USA - Thursday, May 06, 2010 at 22:56:19 (GMT)
Hi there!
Well it’s almost been a year and I am still not walking!
Refresh..
RBKA due to club foot. Have had major nerve issues and thickening at bottom. I am allergic to the liners.
Who is allergic to mineral oil gel????
ME.
Trying an Osur Iceross liner and it seems to work ok.
Have had 5 new sockets due to shrinkage and I am really hoping this liner works so I can get going…
My butt and arms hurt. Otherwise Life is grand!
I still feel more normal without the leg than I ever did with it!
Hope all is well in your neck of the woods!!!
Monica Langefeld <mlangefeld@cox.net>
USA - Monday, April 26, 2010 at 12:37:31 (GMT)
Brian Kroll...
In my opinion a B/K amputation in order to "fix" a Symes surgery is an excellent idea If:
The surgery is an ERTL Procedure performed by an ERTL trained Orthopedic Surgeon.
I suggest you call William ERTL at the University of Oklahoma to schedule an ERTL Procedure.
Either Dr. ERTL will perform the surgery or he will recommend an Orthopedic Surgeon trained in this remarkable procedure.
The ERTL Procedure (B/K) creates a bone bridge to prevent the chop stick effect created by other B/K procedures.
Not only that, the nerves and ligaments are buried in soft tissue to eliminate or reduce significantly post surgical phantom pain.
Several members of Stumps 'R Us have had the ERTL Procedure with REMARKABLE success!
You will find more information on the ERTL Procedure elsewhere on this web site.
If you GOOGLE Dr. William ERTL, Oklahoma State University you can get his contact information.
Good luck...your decision is a sound one!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, April 20, 2010 at 13:13:49 (GMT)
First off, I lost my foot 2 days after Christmas in '88 due to a rare cancer known as Synovial Sarcoma. My amputation is a Symes, they took off my foot and kept the rest but as Symes go, I got a pretty good team of surgeons at Stanford University Hospital and it was as good as this thing can go.
I used to belong to an amputee support group, the Northern Nevada Amputee Support Group, it was run by Georgie Maxfield who also wrote a very popular book about sex and disabilities. Well, if Georgie is still around she's very old but the support group is long gone and I need help from some other amputees.
I found the forums from the ACA, link: http://www.amputee-coalition.org/index.html. Pretty sure you've heard of them, I dashed off an e-mail to Charlene asking for access to the forums but I'll have to wait for this, if there is access.
So, the problem at hand is that after 18 years the army finally owned up to thier mistake and admitted that the loss of my foot was due to thier inaction. Now, I'm not only getting a new prosthesis from them, through my regular prosthetist, but he told me that if I choose to, I can get elective surgery and have my amputation moved up to a BK.
I need other amputees to chat with so I can find out the problems that might arise, the things to watch out for and the stuff to talk to the doctors about. This is a big decision and I don't want to make it un-informed like I did the first time.
Well, back then it was thought that a Symes amputation was a good idea. So, if you can either help me find forums, support groups with amputees that I can chat with or anything like that it would be a great burden off of the shoulders of the 3 people currently involved, me, my wife & my prosthetist.
Thanks
Brian Kroll <brisleep@sbcglobal.net>
USA - Tuesday, April 20, 2010 at 12:58:25 (GMT)
We are a business that provides services to the Department of Defense. We have a program at Ft. Irwin California which is helping our war fighters train before going overseas. There are groups of Role Players which are “Insurgents” and “Casualty”.
Is there a network of individuals who have amputations in California which you know who would be interested in a short-term employment contract?
I have pay rates available for you. The positions are in Ft. Irwin (Barstow, CA). These people are needed to start work a.s.a.p.
Very respectfully,
ACCLAIM TECHNICAL SERVICES
Ed Zapolsky
Vice President
Certified Internet Recruiter
Certified Diversity Recruiter
101 Main Street, Suite 400
Huntington Beach, CA 92648
Toll-free: (866) 202-0506 ext. 1116
Direct: (714) 274-4816
Fax: (714) 274-6016
www.acclaimtechnical.com
Ed Zapolsky <zapolsky@acclaimtechnical.com>
Barstow, CA USA - Friday, April 16, 2010 at 02:21:07 (GMT)
I am writing to you from New Zealand.
I suffer from CRPS and have requested Amputation of the leg.
After reading thru your Forum I note there are other people who have had amputation for this condition. Their email addresses are listed but every time I email them I get replies saying these addresses are no longer current.
One of the people is Don Levesque, email address is listed as:Brydongrdns@netscape.ca.
I was wondering if you had any other contacts for people thru your site as I am really keen to contact him to see how his recovery has been.
The other person I tried to contact was Katie:
KattieJ85@aol.com
who had the same condition.
You have a great website, full of interesting stories.
Thank you for your time.
Darin Christian <mesolutions@xtra.co.nz>
New Zealand - Monday, April 12, 2010 at 11:38:58 (GMT)
Paramount Pictures is seeking a WOMAN MISSING HER LEFT ARM to be a photo double in TRUE GRIT, a new film by Joel & Ethan Coen (FARGO)
Character description: Photo double for adult Mattie Ross:
This woman must be MISSING HER LEFT ARM.
Optimally, she would be around 5'8", 138 lbs, slender to medium build. However, we are open to various looks.
To submit: Please do so asap! Send photos, measurements & contact information to
texascasting2010@gmail.com.
Photos should be non-glamorous, simple snapshots (incl face and body. It's best to wear a tank top & shorts). Measurements should include height, weight, bust, waist & hips. Incl sizes, such as shoe, dress, pants, etc. Include age, phone numbers & place of residence.
Approrpriate candidates may also call our office at 512-637-6775.
Rate of pay: TBD
Note: TRUE GRIT is shooting in Austin, TX. However, we are open to nationwide submissions.
Background info about Mattie Ross & TRUE GRIT: 14 year old Mattie is a simple, tough as nails young woman. Her steely nerves and straightforward manner are a shocking contrast to the way women behaved in the early century. She's possessed of true grit and plenty of determination.
The film is a remake of the western that earned john Wayne his Academy Award as one-eyed sheriff Rooster Cogburn in 1969.
In the Coens' screenplay, "True Grit" will be told from the point of view of Mattie Ross. The movie will begin in 1928, at a point when Mattie tells how she avenged her father's murder back in 1873, when she was only 14 years old.
Thank you!
Debbie DeLisi
True Grit Extras Casting Director
3 Crazy Ladies, Inc.
facebook: debbie.delisi
twitter: debbiedelisi & 3crazyladies
myspace: 3CrazyLadies
Debbie DeLisi <texascasting2010@gmail.com>
Austin, Texas USA - Tuesday, March 30, 2010 at 23:06:56 (GMT)
Casting Amputees for A Feature Film
I have the pleasure of working for award winning director Ramin Bahrani who is currently casting for his fourth feature film.
Part of our cast consist of actors (both professionally and non-professional) who are amputees.
I invite you to visit www.noruzfilms.com to learn about Ramin's past films.
I would like to share this information regarding an employment opportunity for professional and nonprofessional
actors with disabilities in UNTITLED BAHRANI WESTERN which will be the fourth feature film of critically-acclaimed award winning writer/director Ramin Bahrani.
Shooting dates for these roles are unknown at this time.
Bahrani’s previous features: MAN PUSH CART, CHOP SHOP, and GOODBYE SOLO have all had global theatrical, TV and DVD release and premiered in the world’s most prestigious film festivals: Cannes, Venice, Toronto, Sundance and Berlin. Roger Ebert hailed Bahrani as “the director of the decade,” and The New York Times called GOODBYE SOLO “an almost perfect film.” (To learn more about Bahrani’s past award winning films, please visit www.noruzfilms.com.)
We are casting for a scene set in an 1849 asylum. Prior to the reform movement, asylums were homes to patients with mental disabilities and the physically impaired who were often erroneously and unjustly viewed as a threat by society.
All actors will be compensated for their time and no previous acting experience is required.
Interested parties can email inquiries to:
noruzfilms@gmail.com or contact Summer Shelton at 646-450-3052.
We are currently casting the following roles:
PATIENT WITH VITILIGO: Male patient with visible signs of Vitiligo on face.
AMPUTEE PATIENTS: Multiple roles available for men of all ages who are amputees.
PATIENT WITH PHYSICAL MALFORMATIONS: Multiple roles available for men of all ages who have visible physical malformations.
PATIENTS WITH PHYSICAL DISABILITIES: Multiple roles available for actors with other physical disabilities including, but not limited to: Cerebral Palsy, Parkinson’s, Spina Bifida, Spinal Cord Injury, MS, Muscular Dystrophy, or Visual Impairment
PATIENTS WITH COGNITIVE DISABILITIES: Multiple roles available for actors with cognitive disabilities including, but not limited to: Autism, Asperger’s, Developmental Disabilities, Down’s Syndrome, Fragile X, Traumatic Brain Injury, Learning Disabilities, or Alzheimer’s
Summer Shelton, Noruz Films
+1 646 450 3052
Summer Shelton <noruzfilms@gmail.com>
Los Angeles, CA USA - Thursday, March 25, 2010 at 02:13:06 (GMT)
Aaron...
I have used a dry pro for 4 years now. They make one for prosthetics which has a 1 year warranty and one for casts which has a 90 day warranty.
I have the 1 for casts as I did not research before buying.
It is not as thick a rubber as the prosthtic one but does the same thing.
Mine is now 4 yrs old and still no problems. It's great for the shower in the morning. Only used it once for swimming.
If you are very active swimming I would opt for the prosthtic cover as I'm sure it would be more durable.
The cost is about double the cast model, but for around $60.00 a good investment.
Let me know how it works for you.
Mark Quigley <bigquigdarts@yahoo.com>
USA - Saturday, March 20, 2010 at 14:04:57 (GMT)
Hello,
I will be starting to swim again. Until I have a custom made swim prosthesis, I need to get something to cover my prosthesis(to make it water proof).
Looking online, the dry-pro product
http://www.drycorp.com/content/waterproof-prosthetic-protector-informat/
seems to be the one that comes up the most.
Are any of you using this, or something else?
I note that they say it should only be worn for 45 minutes at a time. That sounds like a pain. For those that are swimming, are you going in the water without your prosthesis, or covering it, or using a special made swim prosthesis, or all of the above?
Any input on this would be appreciated.
Thank you,
Aaron Osheroff <aaron_osheroff@hotmail.com>
Novato, CA USA - Monday, March 08, 2010 at 23:01:17 (GMT)
Over the eight years my deltoid mussel group has disintegrated
I am an above elbow amputee suffering in horffic pain especially in winter.
I need futher amputation
No one will do it. Shoulder is starting to become very unstable.
Have you any thoughts on the subject?
J. Papeika <jpapeika11@comcast.net>
USA - Friday, February 26, 2010 at 19:56:21 (GMT)
This is the 2010 Prosthetics Outreach Foundation Dinner Gala Auction
Event Date: Saturday, March 27th, 2010
Event Location: Meydenbauer Center
11100 Northeast 6th Street
Bellevue, WA 98004
425) 637-1020
Event Time:5pm-10pm
Details:
Join us as we raise funds to help restore mobility and independence to children and adults in developing countries. The evening will feature two silent auctions, an amazing live auction with 20+ incredible packages, dessert frenzy, raffle and more!
Enjoy an elegant multi-course dinner, complimentary wines, and inspiring special guests from around the world.
Sincerely,
Cecilie Helm Darling, Volunteer <cecilie.helm@gmail.com>
Seattle, WA USA - Friday, February 19, 2010 at 00:40:44 (GMT)
Hi, I'm linda.
I am 35, married w/ 2 boys. My baby is almost 11 months old.
I'm a quad amputee and looking for others to talk with.
I've been feeling depressed since this just happened last October.
Thanks.
Linda Buranasakorn <lburanas@gmail.com>
USA - Sunday, February 14, 2010 at 15:28:31 (GMT)
Dear Jeff Schmoke...
You don't tell us how old you are or who was at fault in the accident. If the accident were the truck's driver, you should be recompensed by his/her insurance.
Why do you feel the need to draw disability?
I lost my leg 6 years ago. I'm self-employed. Missed three months of work, but never even thought about applying for disability pay.
I spent all my time and energy learning to walk again so I could get back to work.
BTW I work on my feet all day cutting hair.
I may have lost a leg, but I don't consider myself disabled.
Neal Seigfried <puglover22@cox.net>
Bixby, Oklahoma USA - Sunday, February 14, 2010 at 13:53:14 (GMT)
My name is Rick Miller.
I was involved in a motorcycle accident in 1972 that along with many other injuries I suffered from a brachial
plexus injury that left my right upper extremity paralyzed .
Seven years later I elected to have the right arm amputated above elbow, I was fitted for a prosthesis, simple manual with a hook.
I was told prior to the surgery that because I waited so long to amputate that I probably would get very little use from a prosthesis. I'm not sure if they were correct, or if the arm was so WW1 that I couldn't use it ! LOL
That has nothing to due with why I'm writing you.
I recently joined a Boy Scout Troop that is for Special Needs Boys, as an Assistant Scoutmaster. I spent many years in Scouting during my youth, and saw an opportunity to give back some of the skills that I learned in the
outdoors, as well as maybe pass along some positive attitude to young boys that are facing a new way of life !
This is a new troop that was started by another former Boy Scout that has two nephews that are autistic and will soon be of age to join the Scouting program. He is the troops Scoutmaster, and has worked on getting this going for two plus years.
I am trying to find some avenues to recruit boys that are age eleven to eighteen. Because of the HIPA laws protecting the privacy of individuals health records I am
finding it difficult to find any open doors!
Can you recommend any organizations, clubs, websites, that might help me to reach out to these boys that have a physical, mental, or emotional special need.
Our goal is to help these boys experience the Ozarks outdoors, to go camping fishing, float trips, tie knots, to be a Boy Scout !
Thank you
Rick Miller
Troop 2 Ozarks Area Counsel
Rick Miller <rick.miller3@mchsi.com>
Springfield, MO USA - Tuesday, February 02, 2010 at 01:02:11 (GMT)
Dear Mark Somewhere on the Planet...
At 31 life is just beginning for you. Stop feeling so sorry for yourself. So you lost a leg...so what?
You have the latest state of the art Prosthesis made by man & you don't live in Haiti (I assume).
I lost my leg more than 40 years ago (I'm 82) and today I am still working as an Instrument Flight Instructor. In addition I walk, dance and run Stumps 'R Us where I come in contact with people who have genuine reason for self pity but don't allow themselves to fall into that negative abyss.
Possibly you won't find a job as an Olympic Coach or a Nuclear Physicist but there are thousands of openings just waiting for a bright eyed, positive person to fill that position.
Please contact me again and tell me what job & what woman you met that changed your life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 26, 2010 at 13:53:33 (GMT)
I just came across your site and it cheered me up.
I lost my leg in March of last year. I got hit by a sand buggy while riding a quad at glamis.
My leg was ripped off right below the knee but my knee was so damaged they had to take it too.
I was concious for the whole thing and even had to put my severed leg on ice to try and save it.
Long story short...I had /have no insurance and just got a C-leg by liquidating everything I had and am really bummed in life now.
Everyone says I have a great attitude but inside i'm really screwed up about it.
I'm only 31 and just can't imagine that I want to grow old with one leg, plus im not working and no one will hire me.
I've always worked for myself so I don't know what I'm gonna do with my life now.
Thanks for your ear. I'd like to chat with some of your friends though.
Thanks
Mark <msethi50@hotmail.com>
USA - Tuesday, January 26, 2010 at 13:38:03 (GMT)
Can you help me out?
I RECENTLY LOST MY LOWER LEG!!!
I'm writing you because you're disabled too?
Recently I lost my leg. I need your help!
I'm living locally right now in Cupertino, California and have been all my life really, but two years ago I was clipped by a truck on the freeway.
I got my left leg severed by the spinning truck tire when it pushed me over.
S.S. DISABILITY is telling me I'm not disabled enough in order to get any disability compensation.
Any way, I have the S.S./Disability hearing coming up and I want help on it. If you could help me or direct me to an agency that could help represent me, that's what I want.
Whatever kind of monetary assistance I can get from them because I can't walk without a prosthetic leg will help.
Please get me an E-mail back as soon as possible if you can.
I'm also looking for help, or character support, someone that could represent me also to fight for my disability income (We pay into it!!!)
Thank you!
JEFF SCHMOKE <tripodaliens@yahoo.com>
Cupertino, CA USA - Tuesday, January 19, 2010 at 22:51:38 (GMT)
Peter Leland in Arlington, Virginia...
The Spring 2010 GIMPY will be, "in the mail" to you in two weeks!
Your positive, whimsical Stumps 'R attitude is teriffic!
Keep it up!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, January 17, 2010 at 21:42:58 (GMT)
Subject: Maybe it was YOUR, change of address........
Hey so what happened ?
I fell off the mail list? just because I'm on the opposite coast? Ahhhh discrimination against the East Coasters?
You'd better watch out or we'll trip over the lighthouse on you while you're limpin along, ha ha.
OK fellow gimpsters, bad news last year I "lost" the other leg, so now I'm bilateral minus, one ak and one bk, which seems to make it harder to get back on my (prosthetic) feet but I'm learning, in any case I demand that I be put back on the Stumps Gimpy newsletter mail list or at least the e-list or whatever you have.
Now don't make me come out there and track you guys down and kick you with my prostitute limbs.
Talk to you later.......
Thank you for your consideration, you limpy lumpy bunch, and I hope all of you had a great holiday and a great New Year!
Best!
Peter Leland <leland247@aol.com>
Arlington, Vermont USA - Sunday, January 17, 2010 at 21:37:32 (GMT)
Direct Amputee Supply
Looking for a fitting sock at a reasonable price along with other items you use every day? Then stop on by
www.directamputeesupply.com
Our 1-Ply Prosthetic Filler Socks are manufactured right here in the United States and are an excellent value for those requiring additional socks to fine tune your prosthetic socket fit.
We also offer Prosthetic Sheaths which offer friction control as well as wicking away moisture. We have been able to secure a relationship with the manufacturer and are bringing these items direct to you and at a reasonable value by bypassing two levels of distribution. Direct to you is our goal.
Our deodorant products are Natural and free from perfumes and chemicals. Available in a stone, easy to use roll-on, and powder forms, this is an excellent choice for deodorant care without the chemical irritation to the skin.
Stop by our store at
www.directamputeesupply.com
Join our mailing list and let us know what you think and what you’re looking for.
10% off special on all products through 01/31/2010 and free USPS Parcel Post shipping on orders over $35.00 gives you even more value.
We would also like to give our thanks to those that have ordered in the past as we are looking forward to hearing from you again.
Thank You and Happy New Year,
Your Friends at DAS (Direct Amputee Supply)
Ted Nachbar <ted@directamputeesupply.com>
USA - Tuesday, January 12, 2010 at 16:44:04 (GMT)
Mary Base in Kansas City, Missouri...
There is a support group in your area. To find it contact the Amputee Coalition of America at:
http://www.amputee-coalition.org/
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 08, 2010 at 14:28:14 (GMT)
Subject: How to help someone facing an amputation?
My father, now 78 years old, is facing an above-the-knee amputation.
He fell and shattered his right knee and part of his tibia in 1998. Now, after two artificial knees and a fused leg, he has an incurable infection and the doctors are recommending the amputation.
He is a widower and I live with him now so I would like to move from this position of fear and grief to a stronger, more supportive role.
Where do I start?
Is there a support group for someone like me in Kansas City, Missouri?
Thank you!
Mary Base <mary@truckmovers.com>
Kansas City, Missouri USA - Friday, January 08, 2010 at 14:24:41 (GMT)
Hello...
I haven't written in a long time. I have been in bad shape.
An incompetent Physical Therapist had me on a resistance program.
That prograsm tore ligaments, muscles, vessels & nerves from my femur.
My stump swelled to 21 inches & put me back in the hospital.
My rehab progress has been set back 6 months to 1 year.
If you know of a light weight used WHEELCHAIR for sale, could you let me know?
Thank you!
Blessings to you & yours.
Michael Twitty <michaeltwitty@gmail.com>
USA - Saturday, November 21, 2009 at 15:58:37 (GMT)
Hi, I am a right leg (above the knee) amputee and i wondered if you would be so kind as to answer a question for me.
If so, here it is.
My leg was amputated 5/19/02 and i am trying to learn to use my prosthetic. My problem is the severed nerves in my stump. My leg stays asleep and feels like it weighs fifty or more pounds. I am trying to get some information about this problem.
I don't think I will ever learn to use my prosthetic properly with this problem.
Did this happen to you and if so, how long did it last?
Did you overcome it?
I would appreciate your input.
Thank You
(606) 325-6472
Robert L. Booth <bobandsue4144@windstream.net>
USA - Monday, November 09, 2009 at 01:43:35 (GMT)
Luci somewhere in Arkansas...
Below are our guidelines for funding.
Eva Barr...Barr Foundation
The Barr Foundation Amputee Assistance Fund was established in 1995 through grants from the Barr Foundation. The mission of the fund is to provide assistance to amputees that cannot afford limbs, have no other financial resources, and to promote quality prosthetic care for all amputees. This is accomplished directly by providing reimbursement for materials and maintenance costs to prosthetist that provide limbs to amputees who have no other source of funding. This program is a cooperative effort between the Fund and the amputee's prosthetist to improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees whom have individuals, churches or business organizations to make tax deductible donations to the Barr Foundation whose funds can be specifically utilized for a select applicant.
In order for the amputee to receive an application, they must contact a board certified or state licensed prosthetist that may be willing to sponsor them.
See:
http://www.abcop.org for a directory of American Board Certified practitioners in your state.
The prosthetist ,considering sponsorship, must request the application directly from us by call 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that may be sponsoring him/her, prior to them requesting an application in the amputee's name. Please provide the prosthetist with the amputee's name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding unless another source of funding from an individual(s) or organization(s) is participating to share equally in the reimbursement level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening process by one or more members of the review committee upon submission of the application, which is to be completed by both amputee and prosthetist. The applicants will be considered based on need, first time for prosthetic rehabilitation, age and general health conditions. Sponsoring prosthetist must accept our reimbursement levels as payment in full and provide a six (6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a condition of the approval by the sponsor, physical therapist or other qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us with a $25.00 nonrefundable application fee. We will then have 4-6 weeks to process the application and the prosthetist will be notified as to approval or denial. If the application is not received within the 30 day period of sending the application it will be cancelled and the prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Most likely the patient can qualify for Medicare/Medicaid funding.The prosthetist can help you determine that.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Eva Barr
Barr Foundation
www.oandp.com/barr
www.ertlreconstruction.com
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, November 08, 2009 at 20:56:22 (GMT)
My fiance recently lost his Rt. arm AND leg in a motorcycle accident on 9/12/09.
He is finally out of the hospital and recovering very well.
We are desperately trying to obtain information on any possible help to get his prosthetic limbs paid for. Any help at all would be wonderful.
I have been told that there are certain agencies that help to get prosthetics paid for, but I have no idea where to begin to look.
Does anyone have any information regarding financial aid for prosthetics?
He really feels less than a man right now and needs to get at least a leg so that he can stand on his own and take care of himself and his family again.
Thank you to anyone and everyone that could give us any information at all, I pray for each and every amputee, their friends and family members.
God Bless us all.
Luci Taylor <lucitaylor1970@sbcglobal.ne>
Arkansas USA - Sunday, November 08, 2009 at 20:49:08 (GMT)
H. Schwartz in Green Valley, AZ...
That is a new one to me.
Does the A/K prosthetic device fit comfotably without causing pain?
Pain can cause nausea. Other than that I am at a loss as to explain your husband's problem unless when he attempts to walk he feels so unstable that panic causes the nausea.
I'm sorry that I have nothing better to offer.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, October 15, 2009 at 22:02:31 (GMT)
My husband is finally out of the hospital and starting rehab. He had to have an A/K amputation.
His leg is in and he has started Rehabilitation to learn to walk with it.
He has been having some problems and I wanted to know if anyone else has had this problem.
It seems when he is wearing his leg and has it on to do his rehab. or just puts it on to get use to it afterwards he gets really nauseated. He seems to get really sick.
Is this normal?
Will he just have to get use to using the leg?
The amputee clinic seems to have never heard of this or at least doesn't know of anyone else that has ever complained about this particular problem.
Any ideas?
Appreciate it!
H. Schwartz <schwartz1@cox.net>
Green Valley, Arizona USA - Thursday, October 15, 2009 at 21:56:00 (GMT)
I have written you before regarding my husband and his troubles with his prosthetic leg, which have never ended, always something is wrong.
For his phantom pain he was given neuronton pill medication for this, and it does help some, but I saw an advertisement for Neuragen PN. I asked the pharmacist to order it for my husband.
It is $30.00 for 0.17oz, very little liquid and you put 2 drops on the affected area, and spread it around.
He is above the knee. so he puts it on his stump and it WORKS....
It will last a long time (especially all through the night) and is great as far as he is concerned.
It does have a strong odor, they say floral, but it is very very strong, and if you can get past the smell and use it, I think it would be worth the trouble.
It is homeopathic, so it would not interfere with any oral medications you take. It is a good thing. FYI.
Please pass this on to the others, maybe it will help someone else.
PS: If you google it, there is a $5.00 coupon you can use on it also.
karen woodard <klw1946@hotmail.com>
Friendship, Maryland USA - Monday, October 12, 2009 at 02:24:12 (GMT)
Corey Colagrossi in Kathleen, Georgia...
Congratulations...you are finally out of pain and on your way to a "normal" life relatively free of pain & anxiety.
The ERTL Procedure has saved the sanity of many an amputee because as you now know the ERTL surgical propcedure is the only procedure I know of that properly prepares the residual stump for a well fitted prosthetic limb.
I suggest you investigate FREEDOM INNOVATION'S Renegade Foot for your prosthesis. I have used one for the past two years with out breakdowns. This foot allows you to walk easily over uneven terrain and up and down inclined planes.
Please keep us informed as to your progress.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, October 11, 2009 at 01:21:08 (GMT)
Hey Dan ...
Just wanted to let you know that I got the amputation!
I emailed you a long time ago about being in a motorcycle
accident and hurt my leg badly. The Doctors wanted to keep working on it even after 9 surgeries.
I got a hold of Dr. Jan Ertl (who you recommended) who now works along side the Doctor that originally did the surgeries to my leg. He talked with my old Doctor and they both agreed.
I had the amputation September 25th 09.
It took ten hours.
He said they could have done all kinds of surgeries and it would have only made things worse. The damage was just too bad. He said the scar tissue alone would have given me pain for life.
So, now I am a right leg below knee amputee.
I also wanted to share with you a website I have that I have put an advertisement to your website on. It's t-shirts and more for amputees. All profits are donated to the Barr Foundation. These are really funny shirts. They help people who are becoming amputees and are great at breaking the ice for those that are not.
http://www.zazzle.com/coreycola
I want to thank you for your advice and sharing your story with me. It really helped me in a very difficult time with a very difficult decision.
God bless you!
Corey Colagrossi <gunnertcm6@yahoo.com>
Kathleen, Georgia USA - Sunday, October 11, 2009 at 01:08:18 (GMT)
I live in Covington, Indiana and my prosthesis is from Action Brace in Indianapolis.
I know it is a drive for you, but he also comes to Crawfordsville, every other Thursday. it saves me an hour and a half drive.
I've been a B/K amputee for almost three years due to a MRSA infection that nearly did me in, shut my kidneys down and had me wondering if i was going to make it.
The only problem I have ever had is when my stump atrophied and I had to be refit. That was 2 yrs ago.
I still work a 40 hours a week at Home Depot and I'm on my feet most of the day. Never had a problem since the refitting.
Kevin Hagemeir is the name of my prosthetist and he does a great job. I highly recommend his work.
I really didn't know having one leg would hardly be any trouble. The only time I had a bad pain is one night when I got up to use the potty and walked into the bathroom in severe pain in my stump. Imagine my surprise when I turned on the lights and saw no toes!!!!
I had put my leg on backwards.
I was laughing so hard I woke up my wife.
Ha HA HA!
Enough rambling---I hope this info helps, and to all the other gimps out there let me leave you with this...
As I lay in dialysis one day feeling sorry for myself I saw them carry in a lady with no arms or legs. At that moment I decided that I did not have the problem. I thought I did and I would never let it bother me again.
Since then I have been having so much fun and enjoyment out of life----I did not know one leg could be so much fun.
Call or email if you need to talk.
Cheers and good luck to all!
Mark Quigley
Covington, Indiana
765-585-5513
Mark Quigley <bigquigdarts@yahoo.com>
Covington, Indiana USA - Tuesday, October 06, 2009 at 13:19:18 (GMT)
I am a 43 single mother of an 18 daughter. I have been an lpn for more than 16 years....
I got in an accidnet less than 2 miles from my house on a speed trail to get home after 2 dbls.
To work dayturn next day....needless to say, the Readers Digest SHORT verson, I am on my 4th socket, and putting in for a "C" leg....
I am a world of helping people...as my mother always sez "I am an ordinary person, WHO HAS SEZ AND DONE VERY EXTRORDINARY THINGS"
Call me at my house phone, (724)588~6499
...cool? cool!!
x0x0x0x0
Lynnie <tormafish@hotmail.com>
USA - Thursday, September 10, 2009 at 20:31:17 (GMT)
Dear Jennifer Cole...
Have the amputation!
In my opinion the removal of your painful limb may indeed cause you to be free of RSD since RSD is usually a local condition.
To give you the best possible outcome I suggest you have your Orthopedic Surgeon perform an ERTL Procedure.
The ERTL Procedure buries the nerves & tendons in the soft tissue eliminating in most cases Phantom Limb Pain.
I also suggest the amputation be at least 6 inches below the knee in order to properly prepare the residual limb for a prosthesis.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 04, 2009 at 13:32:04 (GMT)
I made a post a few months ago about having a lisfranc injury.
I was misstreated.
I didn't get proper treatment until 3 months later. My foot had 6 screws placed in to help realign my foot. All screws have been removed and I am still in alot of pain.
I have asked my doctor to amputate and he has agreed. I was also told that I have RSD. My concern now is that if I do amputate will the RSD attack my stump?
The only way I will go through with the amputation is if I know that it will add to my quality of life I have lost which has been a lot.
I am going back and forth with this decision.
My family and friends think I am crazy for even considering this.
I change my mind every day and worry about what my future might hold.
Please email me back with what you think...thank you.
Jennifer Cole <Jennifer.Cole@selu.edu>
USA - Friday, September 04, 2009 at 13:19:58 (GMT)
Hello,
I am looking for help for my wife.
She is a BKA from an accident when she was 4. She is now turning 40 and for the last many years she has had more and more problems with her prosthesis.
Hers is such where she has a ball where her ankle is and is without a foot.
From what I have read it is just as I have told her for years. It falls back on the technician making her foot.
She has had it such a long time and was always been active with it.
So after child birth she just figured it was her fault that it doesn't always fit right. She has such trouble walking at times.
So with this information I would like to find her someone that can make her a prosthesis that won't cause her such troubles.
We are in the South Eastern part of Illinois so if anyone would know a good lab in the area I would love to surprise her with the information and maybe an appointment.
Thank you all very much!
Jeff Hawkins <murdish@hotmail.com>
Lawrenceville, Illinois USA - Thursday, September 03, 2009 at 03:05:49 (GMT)
Hi...
My name is Sarah. I'm posting for my boyfriend, Brad, who lost most of his left foot (Chopart) in a motorcycle accident in November.
We are having a hard time with finding a good prosthesis.
He is young (31) and was very active--soccer, biking, climbing--and would like to be still. He is still playing the drums in two bands though. walking is painful after a short time and running is very difficult.
His prosthesis is crap, the zipper broke the first week and he has had no follow up care (Though I don't know if that's his fault of not).
We would love to be able to find some info and support for both of us.
He is in DC and I am in school at UNC-CH. Either place would be good to find help b/c we go back and forth.
Sarah Rosner &
Brad Fullilove
iolanikona@yahoo.com
bradfullilove@gmail.com
Sarah Rosner <iolanikona@yahoo.com>
D.C. USA - Tuesday, September 01, 2009 at 02:31:38 (GMT)
Michael Twitty in Antioch, CA...
Apology accepted.
What are you apologizing for?
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 27, 2009 at 19:18:15 (GMT)
Dan & Friends......
My apology to all.
I live in Antioch, CA
Had rt leg off about 6 inches AK on aug 10th.
Still in convelesceny hospital.
Thank you all!
Michael Twitty <michaeltwitty@gmail.com>
Antioch, CA USA - Thursday, August 27, 2009 at 19:15:36 (GMT)
First off, I appreciate the humorous title of your organization, it fits right in with my mindset.
I'm currently preparing for an above the knee amputation surgery at the end of September and have been looking through a list of support groups in the area (I live in Fremont, CA).
I tried to contact a group in Fremont, but no one is answering their phone. Basically what I'd like to do is either attend a group meeting or speak with someone over the phone so that I can ask a few questions about the process.
I'm having consultations with the surgeon and prosthetic doctor next week, but I also have some anxiety about the more practical issues that I thought someone who'd been through might be able to help me. Questions like what parts of the recovery were easier/harder than you anticipated?
While recovering, and before you got your prosethesis, how did you get around if you had to get up in the middle of the night to use the restroom? How quickly were able to get accustomed to the prosthesis so that you walk around fairly safely?
As far as my background, I'm having the surgery due to side effects of radiation treatment. I had a knee replacement last year due to cancer in the knee and was recovering fairly well. But a few months after having radiation treatment, fibrosis set in. Fribrosis is a stiffening of the tissues that can affect radiation patients to differing degrees. Unfortunately, I was very susceptible to the radiation and now my knee barely bends at all.
I've been on crutches since April, am taking a lot of pain medication, and have difficulty being on my feet for too long without having a lot of swelling and an increase in the pain. As a result, I'm opting to have the amputation because getting a prosthesis will end the pain and give me my quality of life back.
I know it won't be easy, but its far better than what I'm living with now.
Anyway, if there is someone who would be willing to talk with me over the phone who has experienced an above the knee amputation, I would really appreciate it. Or even someone who has had a below the knee amputation could probable answer many of the questions I have.
I can be reached at 510-792-9503 and my home email address is sjmather@sbcglobal.net (feel free to use my work or home emails).
Thank you!
Scott Mather <Scott.Mather@doj.ca.gov>
Fremont , CA USA - Wednesday, August 26, 2009 at 23:40:53 (GMT)
George D. Csaba in Rochester, NY
I really don't know what to say.
How about a LEE press on nail kit from Walgreen's and some Krazy glue?
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
San Francisco, CA USA - Wednesday, August 26, 2009 at 13:06:19 (GMT)
George D. Csaba in Rochester, NY...
The world has just opened up for you! There are so many opportunities that I hesitate to list them here for you.
You are unique!
Motion Picture Directors and Television producers are always on the lookout for new & unusual talent. Missing a part of a thumb is VERY unusual...if I were the producer of the show TRAUMA or ER I would hustle to get you under contract immediately.
The world is your oyster.
While waiting for your big break in show business you can always work at jobs that other unemployed actors fill...waiter, super market cashier, stock boy (that is what NFL star quarterback Kurt Warner did before winning a Super Bowl for St. Louis).
The opportunities are endless!
If you do suicide you will never know what could have been. What a lucky break to have lost a part of your thumb.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 26, 2009 at 00:00:20 (GMT)
My injury is nothing compared to some of the losses that I've read in here. In February 2009, I lost the tip of my thumb due to an accident with a power tool.
Most of you feel very positive about life.
Not in my case.
Since that day, every single day it has been a misery, a disappointment.
I cannot accept the fact that my thumb doesn't have a finger nail, and that it looks the way it looks and the way it feels.
Most people say I'm very lucky, and that it's not that bad.
I don't really care about life anymore. I was on disability for 2 months.
I went back to work and on the same week they fired me. Of course the reason wasn't because of my thumb, but due to the economic down fall.
Anyway, now I don't even know where am I gonna work. I was an assembler, now I think like I'm done.
I thought about suicide many times. The problem is that I would rather die then to put up with a missing body part.
Counseling did not help me, I am crazy as it is, there is no help for me. My life seems like it ended, for good.
I know I sound very negative, but this is how I feel.
George D. Csaba <kispajtas@hotmail.com>
Rochester, New York USA - Tuesday, August 25, 2009 at 23:46:29 (GMT)
Hey fellow gimps.....
As new (ABN) you are my kind of one leg wonders or how many pieces that left us.
Stumps 'R Us, have had many lafs with that.
My Mr Happy left town on 8/10/9.
Look foward 2 contact, news letter & meeting other gimps. We can count the missing parts.
Oh yeh. Been busted for...exibition of speed. Great!!!!
Hang on 2 what's left.
michael twitty <michaeltwitty@gmail.com>
Somewhere, USA - Monday, August 24, 2009 at 12:29:41 (GMT)
Jerome Miller In Lima, Ohio
You are my hero & role model!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 12, 2009 at 02:13:46 (GMT)
My story begins like this....
April 12, 2007 started out like any other day. I went into work (a steel manufacturing factory) to start my day as first shift team leader in charge of four progressive presses and transporting steel coills. I was at the ripe age of 31 years old, going through a divorce, and trying to climb the corporate ladder. Little did I know, not even an hour later, that tragedy was lurking around the corner. I walked over to the overhead crane to have it pick up a coil and move it to a press. The very next thing I realized was that I was in the hospital and it was three weeks later.
Luckily my family and friends were there to support me and answer some of my questions. I think the biggest question that I had that needed answering was "Is my right arm paralyzed". My mom and one of my sisters were there to answer me by saying "Sorry but the doctors had to take your whole right arm to the shoulder to save your life". See, my right arm area was wrapped in bandages, so i couldn't see if my arm was there or not. I still to this day, "feel" my arm still there (or most of you would know it to be phantom pains).
I was told (even though there were no witnesses to the accident) that I was trying to move a 10,900 pound steel coil, about 6 feet tall of steel to a prog press. During the process of trying to pick the coil up with the overhead crane, the coil tipped over causing the coil to fall onto the right side of my body. With all the force of the coil fall, my intestines went to my left side of my stomach causing me to have a hernia. I also sustained a broken right foot, a broken right femur, total amputation of my right arm, and three broken ribs.
I spent 6 weeks in the hospital and 6 weeks in a rehabilitating nursing home. Mind you I was the youngest resident/patient there!! While in the nursing home I had to learn to walk again and to write left-handed. So after 3 months I was back home, learning do everything with one arm. A great thing happened to me, I saw my future wife while at the rehab nursing home. Later I met my future step-daughter. My future wife and I started dating at the end of August/beginning of September 2007. We got married on January 16, 2009. She's the most beautiful, most caring, most loving, most understanding mom/wife that I'm glad I'm married to. I Love You My Love!!!
A week before Thanksgiving in 2007, I was given a myoletric prosthesis to try to "replace" what once was there. I would try to wear it as much possible but I have an enormous amount of pain on the left side of my stomach where the straps go to be attached to the prosthetic. About a month ago I went to see a surgeon about my stomach pain and he told me that I have had a hernia (where the pain is) for 2 years and 4 months now according to the CT scan in 2007. Amazing huh? None of the other doctors, that I saw, would do anything for my pain. The other doctors I saw on this matter said there was never anything wrong with me.
I treasure life day by day. I come across obstacles everyday. Before my accident, I rode my 1979 Harley Davidson Lowrider, I went fishing, I played video games, I hugged with two hands, and did the normal stuff that anyone with 2 arms and 2 hands would do . I realize my life has changed, not only physically but mentally too. But one thing I HAVEN'T done is GIVE UP. When It comes to kids seeing my missing arm they make it known that it isn't there. I think it's funny that they say it out loud that my arm is gone. Followed by a SHUSHHHH from their parents.
February 16, 1996 (Friday) is another important day for me. That night I was rushed to the Emergency Room by my parents because I was having a hard time breathing. Early the next morning I was approached by the doctor telling me that I had a mass in my chest the size of a softball. The doctor said the best thing for me, was to go home and come back on Monday. I came back on Monday alright, but it was in an ambulance. It turns out that that mass in my chest was a tumor (cancer) that grew from a size of a softball to a football size in three days. Being 20 years old and having cancer was a very devastating and very emotional time for me. I went through 3 biopsies that I nearly died from and one radiation treatment (thankfully). The doctors realized that the tumor wasn't decreasing by the radiation so they stopped that.
The tumor at that point was renamed to a very rare type known as Germ Cell Cancer (a.k.a. Testicular Cancer in my chest). The cancer was wrapped around my heart, lungs, and esophagus. Lucky me, huh? The only option for me for eventually removing the cancer was to do Chemotherapy. So for 6 months-8 hours a day-5 days a week, that is what I did. I lost my hair, vomited, and cried everyday due to the chemo. I was 20 years old, I didn't want to die before my 21st birthday. I appreciate that I had your shoulder to cry on during my cancer treatment (Love You Mom).
One week prior to my 21st birthday the cancer was removed. I have been cancer free for 13 and a half years now.
Thanks to all for reading.
May God Bless You All!!!
Jerome Miller <jojo.maddy.and.me@gmail.com >
Lima, Ohio USA - Wednesday, August 12, 2009 at 02:12:10 (GMT)
Meranda Prediger in Alberta Canada
You are doing the right thing!
You are correct in not listening to the MORONS who are telling you that you are "off your rocker" in looking forward to the amputation that will return a normal life to you.
My wife Jody & I returned today from a 4 day trip to Oregon & Washington State where I piloted a Beech Sierra in all weather conditions for 18 hours landing in all airports in the San Juan Islands beginning with Friday Harbor.
I have been an amputee for more than 40 years. It has not stopped me from doing ANYTHING...it won't stop you from doing anything either.
The best surgical procedure I know of is the ERTL Procedure. It is described elsewhere on this web site.
I highly recommend it!
The very best of luck in your return to a normal life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 06, 2009 at 16:05:50 (GMT)
I am a 31 year old single mother of four and am facing above knee amputation of my right leg.
I was in a car crash (refuse to call it an accident as the other fool could very easily have avoided causing it, lol) five and a half years ago.
The trauma of the impact caused trauma induced osteo arthritis in my right knee. Several surgeries were attempted in order to "fix" my knee and help me to regain mobility and control pain and swelling. None of them worked in the slightest, my knee continued to worsen at an alarming rate.
Due to one of the surgeries that included bone grafting I developed osteomylitis in the distal head of the femur, the patella and the proximal head of the tibia. I have been battling the infection since January of this year with little success (IV antibiotics for six and a half months does one no good whatsoever!) and have had four more surgeries in that time (Jan. 25, Feb. 19, April 20, July 9).
The ortho I had for the first three surgeries this year refused to amputate saying I am "too young" even though he was the first to say he does not believe my leg can be "fixed" and that I will never walk on this leg again. He seems to think that a single mother with young children (youngest is 3) should be perfectly happy to have a useless, painful leg dangling at her side while she hops around on crutches.
The new surgeon, the one around for the most recent surgery agrees that nothing can be done to make my leg work again. He said the bone, tendon, ligament and nerve damage caused by both the initial injury and the infection is beyond repair. He recommends amputation (expected to be performed in the fall) after I heal from this last surgery. He wants to see the infection under control first so that the stump doesn't become infected as well.
I have very mixed emotions regarding this. I am very nervous about the surgery and everything that will come after it, but I am also looking forward to at least having the chance of real mobility again.
Every group I have found so far seems to think I am off my rocker for not being terribly upset about this impending loss of limb. Everyone is telling me how hard it will be emotionally, how much I will grieve the loss of my leg, how much I will regret this, etc. I was relieved to find your page and read your little blurb about how you lost your leg. I have so many questions that, though I could ask my doctor, I would prefer to get the answers from actual amputees.
I am not in California, in fact I am in Alberta Canada. I hope that I will still be able to pester you from time to time. I know this will be a huge change, though I foresee it being a predominately positive one, and I am very nervous.
I used to be such an active person (snowboarding, mountain biking, motorcycle riding, swimming - competitive, even rode dressage!) and I have dearly missed these activities, but I don't even know if I should expect to be able to do any of them again.
In all honesty, I will be thrilled if I can walk again and work. I haven't been able to work since the crash and am sick of being poor.
Meranda Prediger <merandap@hotmail.com>
Alberta, Canada - Thursday, August 06, 2009 at 15:54:33 (GMT)
Joy Hibbets in Oklahoma...
San Francisco Prosthetics Certified Prosthetist Wayne Koniuk has this suggestion.
"If she was cast over the liner, this can turn the leg into a cylinder with no definition around the skeletal shape of the leg.
If presented with this problem I would recommend a 0 or 1 ply check socket fit, without the liner, that will catch the real shape of the leg.
The liner can then be added on the model before the socket is made increasing the volume the correct amount to maintain the same shape and volume as the test socket".
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Friday, July 24, 2009 at 12:10:01 (GMT)
Hello!
My husband & I were seriously injured in a motorcycle accident September 2, 2007.
To make a long story short we both lost our left legs below the knee! We both received our prosthetics in December of that same year!
My husband has done extremely well with his, however mine is a different story!
I use the pin locking system & socket & the Alpha Liner & use the Proprio Foot (my husband uses the same set up)! I have alot of trouble with my prosthetic "toe-ing in" as the day goes on! My socks slide down as well! No matter how many socks I put on, it's just a matter of an hour or so till I'm fighting the problem again!
It's weird becasue when this happens, I can remove the liner & put it right back on, and put on less socks and everything fits great, but then after an hour or so, its back to everything sliding down & toeing in (it's almost like my stump is also sliding down further as well)!
I've tried smaller liners, having new sockets built, adjustments.....I even had a "revision" done on my stump in April of 2009 and the doctor removed about 5 inches of loose skin! I don't have much loose skin now but still having the same problem!
Can anyone give some helpfull info??
Thanks
Joy N. Hibbets <kjhhibbets@cableone.net >
Oklahoma USA - Thursday, July 23, 2009 at 16:38:22 (GMT)
JD Moore in Milpitas, CA ...
I suggest you mail your prosthetic devices to:
San Francisco Prosthetics
Attn: Certified Prosthetist Wayne Koniuk
324 Divisadero Street
San Francisco, CA 94117
Wayne Koniuk leads a team of Prosthetists every year into 3rd World countries fitting amputees with donated appliances like yours.
Your donation may save a life.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, July 15, 2009 at 21:40:20 (GMT)
My father (a veteran) had a BTK 2 years ago. He recently passed away, and we have supplies (used but sterilized and in like-new condition).
We'd like to donate to someone who could use them.
Included are 2 drying stands, several stump socks, etc.
Because of health regulations, organizations & clinics can't accept these items.
Anyone know of an amputee support group in the Silicon Valley area that we could offer these to? (Having no luck looking on-line!)
Thanks!
JD Moore <kittyshrink@hotmail.com>
Milpitas, CA USA - Wednesday, July 15, 2009 at 21:33:54 (GMT)
Johnette Oman in Reno, Nevada...
Use this link to navigate to the ONE SHOE CREW. That is their job!
http://www.amputee-coalition.org/fact_sheets/oddshoe.html
Thank you for contacting Stumps 'R Us!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, July 08, 2009 at 00:10:46 (GMT)
I live in Reno NV. I'm a polio survivor and have to buy 2 different sizes and widths of shoes. I usually just throw away the one I don't need.
Nordstroms has a split shoe size program and told me they donate the 'extra' shoe to programs who help amputees.
I don't know why I didn't think of that all these years!!!!!
I have 2 right 8 wide and 2 left 9.5 medium width Ryka womens tenny shoes I would like to donate to someone in the Reno/Sparks NV area. Any ideas of how to get the info out there?
Johnette Oman <johnette_o@hotmail.com>
Reno/Sparks, Nevada USA - Wednesday, July 08, 2009 at 00:06:08 (GMT)
Monica Langefeld,
I don't know about the food Dan Sorkin recommended, but I wholeheartedly endorse the Genesis II+ foot from MICA Corp.
I am a RAK and was out doing yard work this weekend, and still can't get over how well this thing flexes on oneven terrain, both forward/back and side to side. It was so much better than the foot I originally had that was more like a brick to put my shoe onto.
Good luck.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Tuesday, July 07, 2009 at 21:56:35 (GMT)
Monica Langefeld...
The foot you are looking for in order to walk easily and gracefully on uneven surfaces, sand, inclined planes and cobblestones is the RENEGADE FOOT from FREEDOM INNOVATIONS.
That is what I use and have for the past three years,
I have yet to take it back to be refurbished or adjusted by my Cerified Prosthetist Wayne Koniuk of San Francisco Prosthetics who recommended it to me.
Welcome to my world free of pain and not walking like a duck!
Dan Sorkin...Chief Stump <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 03, 2009 at 17:49:50 (GMT)
Dang!
I need some of your magic or at least your insight and knowledge.
Congenital deformity of right leg from knee down, generally termed as a type of club foot...operated on 6 times to make it "socially and cosmetically" acceptable, walked like a waddling duck due to 3 inch length discrepancy, yada, yada, yada...
31 years later took a wrong step off a curb and heard a pop.... that was April...the leg came off 4 days ago and I feel guilty feeling so happy about it.
I don't know where to look for support, feet or anything! Can you advise please?
I want to walk, on the grass, on the beach, I want to finally touch the ocean!
Monica Langefeld <mlangefeld@cox.net>
USA - Friday, July 03, 2009 at 17:42:08 (GMT)
We just opened our new online store a few short weeks ago and attended our first Amputee Coalition of America conference held this past June.
Let me introduce myself. My name is Ted Nachbar and my company's name is Direct Amputee Supply, LLC.
Being involved with the wholesale distribution of prosthetic supplies to amputee’s practitioners for nearly fourteen years, I decided it was time to bring some of those items directly to the amputee at a more reasonable cost.
My field of expertise includes an item that I had patented for use in prosthetics along with the ability to provide service and technical support on many items including hydraulic knees, manual knees, prosthetic pin locking systems, and many materials used in the building of prosthetic limbs.
I recently joined the Amputee Coalition of America, a national organization that provides much needed peer support for amputees as well as litigation for amputee rights.
My new ecommerce website, www.directamputeesupply.com had our Grand Opening there and we were able to showcase some of our items to the patrons.
Our on-line store consists of carefully selected items that the amputee can easily order and replace on their own without having to go through their practitioner.
The store's main focus of operation is to save the amputee valuable time and money while supporting their needs with replaceable products such as socks, deodorants, skin care products and comfort aids. We plan on expanding our product line and with your help, we'll know what you are looking for.
Until next time, check out the website and let us know what you think!
directamputeesupply.com
Ted Nachbar <ted@directamputeesupply.com >
USA - Wednesday, July 01, 2009 at 03:10:07 (GMT)
I am a recent foot amputee and am having a very difficult time with it. I would like to be around people who understand the feelings i'm having and be a support for them as I hope they can be for me.
Thank you!
Carol Montag <cdmlaff@yahoo.com >
USA - Wednesday, July 01, 2009 at 02:59:34 (GMT)
Greetings Candace & Mary Martin:
I don't know anything about all the life challenges and complications which your amputation has caused, but only wish to offer some encouragement based on my own experience.
I was over 40, single (never married), running my own professional photography business by myself (sole means of support), living alone and with no family members within thousands of miles, when a driver who ran a stop light caused an accident necessitating the amputation of my right foot a few days later.
I was in 3 hospitals (sequentially) for 9 days. A half week after I came home, I did a portrait of a client in my studio standing on my one remaining foot and supported by Lofstran(spelling?) crutches. While in my hospital bed, I also negotiated a photographic contract (executed by two photographers I hired over the phone for the job) using the free phone they gave me to use in the hospital. The income from that contract paid my next month's studio rent.
The amputation caused all sorts of complications in my active and independent life. However, as soon as possible (when my leg finally healed enough), I went to a prosthetist and was filled for a new below-the-knee leg and foot.
Now (it's been over 10 years since my accident) I not only walk, but dance and hike and ski (with a knee brace)...And, when I walk, most folks have no idea whatsoever that I am an amputee.
Although at the moment you may have lots of obstacles to overcome due to your amputation, you are still alive and have a choice as to whether you see your glass as half empty or half full: i.e., you can focus on your loss, or on what you still have left.
I truly hope you shall find ways to "start living again"....Keep in mind that your attitude will play a huge role in your future!
As my Latin teacher brother reminds me in his emails, "CARPE DIEM"!!! (i.e., as the Romans said hundreds of years ago, "seize the day!")
Best regards
M. Christine Torrington <christine@sfphotopro.com>
San Francisco, CA USA - Sunday, June 28, 2009 at 18:56:53 (GMT)
I'm a 52 year-old female and recent amputee (Right leg aka) looking for a support group.
I guess I'm handling this all right except for the almost every day little crying jag I have for one reason or other.
Sometmes because I feel like my life has totally changed and I'll never be able to do the things I used to do - I can't even keep my house clean.
Sometimes because I don't know what to expect and it scares me.
Anyway, here's my info:
Mary Martin <mebdm1956@yahoo.com>
Whiteside, TN USA - Sunday, June 28, 2009 at 18:50:09 (GMT)
Dear Jason Koger,
You are an inspiration.
http://www.youtube.com/watch?v=vF7aqvtVhj4
So is your wife. Your family & the world are fortunate to have you & your story of courageous optimism.
You are my role model!
Sincerely
Dan Sorkin
www.stumps.org
Chief Stump
Fight organized crime.
Don't re-elect anyone.
…anon.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, June 27, 2009 at 21:12:37 (GMT)
My name is Candace Blanton
I had a below the knee amputation on my right leg on March 13.
I am not handling it well.
I don't know where or how to start living again.
I have not started physical therapy so I am bedridden. I am scheduled to be "evaluated" on June 30.
Could someone contact me to give me advice?
Thank you!
Candace Blanton <caelfosbl@aol.com>
USA - Wednesday, June 24, 2009 at 12:47:21 (GMT)
I was born missing my right arm just below the elbow.
Growing up as a child I wore a standard hook, but once got highly involved in sports I quit wearing it.
I have participated in every sport that I have wanted to without really having to modify anything. Now I am really interested in riding dirt bikes. I know they make the "recklus" auto shifter for bikes, but I am sharing a bike with my partner and can't make any major modifications.
I have been looking for a prosthetic to help with throttle and holding on issues.
Does anyone have any websites or ideas for me? Anything will help.
Thank you!
Tammi Mahon <Boardchik@aol.com>
Carmichael, California USA - Monday, June 15, 2009 at 01:30:26 (GMT)
I was in a car accident in February.
They say I am a miracle.
I could use a support system.
I am new (lol) at this and sometimes I feel the brave face I put on and other days I don't.
I am a through knee (left) amputee (still weird to describe myself that way). Many rods, plates, other broken spots and three time brought back from dead. My amputation was done to save me.
The phantom pain and sensitivity is the worst.
I do o.k. mentally I think. I do bury it, I have no one to talk to.
Currently residing in Wichita Ks. with my sister and her family. Went from accident in Mt to my mom's in Id to Ks. Hopefully I can get the help I need and get a leg.
Thank you.
Kelly Danielson <nae_danielson@yahoo.com>
Wichita, Kansas USA - Tuesday, June 09, 2009 at 12:45:41 (GMT)
Amanda Claridge in Salem, Oregon...
Thank you for sharing your story with us.
That sense of humor will get you over the rough spots. It always worked well for me after my amputation in 1968.
You say you can only walk a few steps in your prosthesis.
The problem is easily fixed by a COMPETANT Certified Prosthetist.
The problem you describe comes from an ill fitting prosthetic socket. It should fit like a comfortable old shoe.
Also...
The angle of the prosthetic foot and the length of the prosthetic leg itself has to match perfectly with your "good" leg. If it doesn't, back pain and stump abrasions will appear.
You have to be aggressive in demanding a perfectly fitting prosthetic device.
Until I found C.P. Bob Putzi & Wayne Koniuk of San Francisco Prosthetics in San Francisco I had the same problems you are experiencing today. They created a perfectly fitting socket, attached the foot at a proper angle and adjusted the length of the prosthetic leg until I was comfortable walking.
Today I rarely think about walking with pain...I DON'T HAVE ANY!
Go back to your prosthetist and have him make the proper adjustments for you.
Good luck Amanda!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, June 07, 2009 at 13:29:31 (GMT)
I am a 28 year old right AKA.
I was diagnosed with cancer in my right knee and thigh in November 2008. After chemo and radiation treatments, I had knee replacement surgery March 5th 2009. They had to do some blood vessel grafting because the tumor had wrapped itself around all the good ones.
In the recovery room, I lost feeling in my toes and went back in for surgery to try and save my leg. After a seven hour surgery, the decision was made to amputate.
I have taken everything pretty well considering the rollercoaster ride it has been, and somehow still have a sense of humor, joking with the docs and nurses and naming my tumor after Steve McQueen.
I have my first prosthetic and have now returned to work, but I am depressed and despairing that I will ever walk more than a few steps. I know there is a light at the end of the tunnel, but right now I can't envision myself getting there, and I have a lot of impatience. I have a great support network through family, friends and coworkers, but there are things that get to me that only an amputee will understand.
I'd like to talk with someone who had had a similar experience, but any contact is welcome really.
I have a blog at ironrose1980.livejournal.com and I can be reached at ironrose1980@yahoo.com.
Thanks!
Amanda Claridge <ironrose1980@yahoo.com>
Salem, Oregon USA - Sunday, June 07, 2009 at 13:12:37 (GMT)
Hi, my name is Nicki...
I'm having a slight issue. I'm a partial foot amputee and I seem to be having a bit of trouble finding someone to replace the part of my foot that I'm missing.
I've tried going to a few prosthetic companies and they seem to want to make me something that isn't going to be functional for me. I don't want a device the goes up my leg and straps on.
I have good motion in the rest of my remaining foot. I've done a little research online and have seen others like me with the exact same amputation. I've seen where you can get the silicone or something made that resembles a foot.
I currently reside in the State of Georgia. I'm starting to become discouraged. Right now I'm currently wearing a walking boot. I want to get out of this boot because my foot is completely healed.
Is there anyone that can point me in the right direction?
Do, I need to travel outside my area? Meaning to another state?
HELP! It's okay to email me.
Nicki Darling <nickidarling@att.net >
Alpharetta, Georgia USA - Thursday, June 04, 2009 at 16:41:27 (GMT)
Hi I am a 4th year medical student at the University of Manchester in the UK.
I am about to produce an educational DVD for people who are about to have an above or below knee amputation.
In the past all such videos and leaflets have been designed by doctors on assumptions of what people are most worried about.
I am first finding out the specific worries that people have and then designing the video/leaflet with the patient ideas.
If anyone has the time or enthusiasm to help me please get in touch either on here or at
ben.darwent@student.manchester.ac.uk.
It doesn't matter if you awaiting an amputation or have had one in the past or are just simply knowledgable; any help would be greatly appreciated.
Thanks
Ben Darwent <Ben.Darwent@student.manchester.ac.uk>
Manchester, England - Wednesday, June 03, 2009 at 17:15:12 (GMT)
Dana Anderson in Florence, NC...
Before opting out for the Dirt Nap I have several suggestions.
1) Find a Certified Prosthetist who can properly fit your stump to its socket. It sounds as if the C.P. Prosthetist you have today is an incompetant MORON. There is no reason why the socket cannot be made to so perfectly fit that you feel better wearing it than not.
2) Type the words MIRROR THERAPY into the GOOGLE search engine & use it once you find it. It is simply a mirror in a cardboard box. You will be amazed at how quickly your Phantom Pain either disappears completely or is significantly reduced after using this remarkable CHEAP device.
These two simple steps (pardon the pun) will make life worth living again.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, June 01, 2009 at 20:03:29 (GMT)
I was pleased to find this publication and to see that perhaps I am not quite as alone as I have felt since losing my left leg below the knee to a surgical site staph infection.
I ruptured my Achilles tendon in January 2006 and after two years of fighting this infection it was decided that amputation was the best option for getting me back to a somewhat normal life. I had lost the tendon to the infection as well as having significant nerve damage, leaving my foot almost completely without sensation other than the phantom pain that had already begun. The pain was and remains completely indescribable, which makes this website all the more important since so many others here know of what I speak.
My life now is anything but normal. I live alone now after my wife decided it was more than she could deal with.
I have had my prosthesis for just over a year now and I still cannot wear it for more than three hours. After a couple of days of using it it takes a few days completely off it for the pain to subside a bit.
My stump reaches literally two inches below the knee, giving me little leverage in trying to bend the knee.
The doctors at pain management recommend that I seek out another surgeon to take off my knee.
I have always been an active person, earning a good living with my hands as an electrician. I have also been a drummer in local bands for the past thirty years before this change.
Since this all began I have gained fifty pounds, further adding to the pressure and pain in the leg. Facing alienation, an uncertain future, and constant pain I can't help but dwell on a final option on a daily basis.
It is nice to read of all those that have faced this with more courage and optomism than I apparently have, living life with the vigor and opportunity that I used to enjoy.
I just can't see there from here.
Thanks again for the website and the chance to vent my frustrations. I just wanted to document my plight in the event I don't survive this ordeal.
Dana Anderson <blogwiser@gmail.com>
Florence, NC USA - Monday, June 01, 2009 at 19:52:41 (GMT)
Hi! I am a new RBKN amputee.
I have a super narrow foot 81/2 AAAA. My prosthetic foot had to be shaved down on both sides which included "shaving off the last toe, part of the 3rd toe and the great toe.
The foot still does not fit most of my shoes.
Does anyone have a suggestion for a better fitting foot apparatus?
Thanks!
Danette Schader <danetteschader@gmail.com>
USA - Friday, May 29, 2009 at 00:03:01 (GMT)
I am Cherryl Abello and my mom is a bilateral above-the-knee amputee. We are from the Philippines.
My mom and dad had a motorcycle accident July 20, 2008. My dad had multiple fractures and suffered a minor head injury. My mom on the other hand broke her right limbs in 5 places. She broke her scapula and she lost both of her legs coz her legs were literally crushed by the car (a taxi) that hit my parents.
The doctors weren't able to put the legs back together because it was just hopeless.
My dad retired from his work about 6 yrs ago and my mom, who was the highest-ranking nurse at a big hospital here in the Philippines was forced to leave her job.
The owner of the taxi company that hit my mom and dad refused to buy her prosthetic legs because they said that the purchasing of the prosthetic legs is not their responsibility anymore because they already settled the hospital bills.
Money is really a challenge for us now. I would like to know if you know any organization that will sponsor a pair of prosthetic legs?
Have a good day,
Chen-chen ^_^
Cherryl Abello <cherryllyne@gmail.com>
Philippines - Wednesday, May 27, 2009 at 03:18:15 (GMT)
Hi. My name is Peggy...
I am a below knee amputee for 5 years. I've also been a Mommy for 3 years.
I learned quickly that there are very few resources for amputee women going through a pregnancy and dealing with an infant, and now a toddler.
I've started writing a blog about my experiences, and I thought that it might be helpful for other amputees. It also sheds the comical aspect on what can happen in situations when you are an amputee.
www.amputeemommy.blogspot.com
Thanks.
peggy chenoweth <eyegalster@gmail.com>
USA - Saturday, May 23, 2009 at 13:24:06 (GMT)
Hi Dan!
I am a new amputee (RBKA) and in the prosthesis training segment of my new journey.
Please add my name and information for your web site.
Thanks!
Danette Schader <danetteschader@gmail.com>
Helena, Alabama USA - Thursday, May 21, 2009 at 22:53:54 (GMT)
Hi ... My Name is Jennifer!
I have a lisfranc injury and I am considering having my leg amputated due to my foot injury. I feel like my life is falling apart because I am running out of answers. I am in constant pain and can barely walk.
Please anyone with any information that would like to chat, Email me at Jennifer.Cole@selu.edu.
Thank you
Jennifer Cole <w0224689@imap.selu.edu >
USA - Thursday, May 21, 2009 at 02:45:54 (GMT)
Corey...
Good luck with the amputation and your T-shirt business.
By all means link wwww.stumps.org to your web site.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, May 20, 2009 at 17:26:34 (GMT)
Hello this is Corey again...
I just wanted to give you an update. A really big Physical Therapy clinic is donating their time to help me get in shape. At first they were focused on trying to make my ankle and foot work. They quickly found out that this was just not going to happen.
My next appointment my PT had the owner of the clinic come and talk to me. He let me know that in his best opinion amputation would be the only way I would ever be able to walk.
They are now helping me get my knee and hip in shape and ready for a prosthesis. That way I will heal faster and walk sooner. They were really my last hope of saving this leg. So, on Thursday I have a Doctors appointment to talk about and maybe set a date for the amputation.
I was having some trouble handling this until I started trying to think of the fun side. I have been making t-shirts for my self and family of all kinds of things for a long time.
Two weeks ago I heard a saying that made me laugh. It was " the lesser of two evils".
I thought about me with a stump and thought "my other leg must be more evil". So, I designed a t-shirt based on that. Then I started having all kinds of idea's! I told one of my friends and supporters who is an amputee and he said I should make them available to everyone. That they were good!
I looked on line and found a place to do that. Its at:
www.zazzle.com/coreycola*
10% of every shirt goes to the Barr Foundation to help in this time of need! I don't know what i would do if it wasn't for the help of others.
The other 5% goes to me to save up so that when I go to the hospitals visiting I can bring t-shirts to give out. Unfortunatly, I have to pay full price on the shirts too. But at least they are out there. They are for the person with a sense of humor. They are all rated G. Nothing nasty. I had a request for a nasty one already. I refused to make it even tho it cost me a sale.
Anywho, I just want to thank you for your help and sharing your story with me.
I would also like to ask if it is ok to put a link to your site on my store?
Thanks again,
Corey
www.zazzle.com/coreycola*
Helen Colagrossi <gunnertcm6@yahoo.com>
USA - Wednesday, May 20, 2009 at 17:22:14 (GMT)
Branch Hunsaker in Dallas, Texas...
Thank you & Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, May 01, 2009 at 02:36:33 (GMT)
Hello...
I just recently came across your web site. Though I am handicapped, I am not an amputee. I am however finishing school at UT Southwestern (in Dallas, Tx) prosthetics and orthotics program.
I was looking for a support-group type website for an assignment, and I came across your site.
I think it is a great forum. I will definitley be directing my future patients to seek advice from you all.
Good luck, and thanks a ton!
Branch Hunsaker <branchhunsaker@yahoo.com>
Dallas, Texas USA - Friday, May 01, 2009 at 02:34:13 (GMT)
Corey C. in Kathleen, Geargia...
I had the same decision to make in 1968 after my motorcycle accident. My left leg was crushed and broken in many places. I also crushed two vertibra and broke several ribs.
I was in the hospital for several months before I realized that the doctors were experimenting to see if they could save my left leg after the other injuries healed.
Presented with the same information you got I elected to have my left leg amputated below the knee.
I have never regretted the decision because it permitted me to walk again naturally ending any future surgeries.
If I had known about the ERTL Surgical Procedure in 1968 I would have elected to have that done because it almost guarantees no post operative pain. The procedure builds a bridge preventing the wishbone effect in the residual stump as opposed to other amputation procedures.
You should be able to walk almost immediately after the ERTL Procedure with crutches.
An amputation is as safe or hazardous as any surgery. No more...no less.
After amputation surgery I was in the hospital for one week.
Have the amputation and get on with your life.
After amputation surgery I earned an FAA Aircraft Instrument Flight Instructor certificate (I currently teach at Buchanan Field in Concord, CA), I dance...poorly, walk fast and do everything I used to do before the amputation.
Do it and good luck with your ERTL Procedure!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, April 27, 2009 at 00:28:18 (GMT)
Subject: To Keep or Not To Keep That Is The Question!
Hello...
I was in a motorcycle accident on September 6 2008. The bike is fine. I took all the impact on my right leg.
I broke my Tibia and am now missing a 1 1/2" section but have a bone graft that is not taking very well. I also broke my fibula in two places.
They cannot repair it.
I have two rods in my lower leg and lots of screws. I lost most of the muscle on the inside and front side of my leg. They took my lat. muscle from my back to do a muscle flap. It measures, 11" x 6".
The skin graft came from my left thigh. My hip broke in five places and they "fixed" it with 23 screws.
My hip feels better the more I use it.
My knee has some discomfort but they say that will get better in time. They went through my knee to put the rods in and to get the bone graft from my femur. My ankle is fused in a drop foot position from being in a splint for so long. My toes are also fused and can only move about 1/4".
I have lots of nerve damage that pains me very much every day. Mostly at night as I try to stay busy during the day. I have been working hard to get this ankle to move with no luck. The more I work on my toes the worse the pain is.
The OS says I will have more surgeries to keep this leg. Or I can have one surgery and be done with this.
What a thing to have on your head.
I have read all about the Ertl procedure and talked with some amputees. I have been trying to find people who have had damage this bad and kept their leg and are able to walk fine. Every time I ask I get introduced to an amputee.
I guess my questions are:
How long after the Ertl would I be able to walk?
How dangerous is an amputation? As far a death goes?
How long in the hospital?
I don't know, maybe just any advice or help you can share with me.
This is the hardest decision I have ever been faced with. I just don't know what to do at all.
Thank you very much for your help and for this site!
I have a Wife and four wonderful kids!
Corey C. <gunnertcm6@yahoo.com>
Kathleen, Georgia USA - Sunday, April 26, 2009 at 23:55:07 (GMT)
Margaret Rajnic...
The opening line in your dating resume should be, "I am an Above the knee (or below the knee or upper extremity amputee...which ever you are" followed by, "I love camping, sky diving..." or whatever your interests are.
I found as an amputee, being open & unashamed of the fact that I am an amputee breaks the ice and separates the wheat from the chaff.
Those men who would be put off because of your "disability" are not worth your time anyway. It is good to know who they are early on.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, April 24, 2009 at 15:07:20 (GMT)
Hello...
I need some assistance in discussing the subject of my being an amputee with men.
I am a single female (no its not my profile for a dating site) and need some advice from men and women on how they tell somebody that, "I am an amputee".
I am on a dating web site and have several persons to meet and I need advice.
Thanks
Margaret Rajnic <zlataraj@gmail>
USA - Friday, April 24, 2009 at 14:57:23 (GMT)
Dear Sammy,
We do have something in common.
After my motorcycle accident I had the same choice as your husband and never regretted it. I voluntarily had my left leg amputated below the knee soon after to prevent the doctors from experimenting.
I wanted to get on with my life.
I found that it was normal for the stump to rapidly shrink for the first year. To compensate for the normal shrinkage your husband should be using more & more Stump socks to compensate for the increased space.
It does stop after about one year unless there is significant weight loss or gain AFTER the year.
Bacterial infections occur if the stump socks are not changed daily. Because of the heat & moisture in the prosthetic socket, bacterial bugs thrive...they love it.
Also...
If the prosthetic socket is not a perfect fit abrasions will occur encouraging bacterial infections.Your husband's Certified Prosthetist should be making constant adjustments to insure that the socket is not rubbing a specific spot raw.
There is light at the end of the tunnel. I had my B/K amputation in 1968. Today I remain an active FAA Certified Instrument Aircraft Instructor. I teach, walk, dance normally because I have a perfectly fitted Prosthetic Device. The foot I use is the RENEGADE from Freedom Innovation. I use this foot because it permits me to walk normally on all kinds of surfaces including sand, cobblestones and inclined planes.
The very best of luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, April 18, 2009 at 15:31:06 (GMT)
Hi
It seems that we have something in commom.
My husband had a motorcycle accident March 08. After
3 months in the hospital, rehab and home visiting nurse he developed an infection and had to have a below the knee amputation.
The doctors wanted to experiment some more but my husband had enough and discharged himself from that hospital and found a doctor that was recommended to us to do the amputation.
He was relieved to have it done and be rid of the pain he had been going through for 31/2 months. He had 8 surgeries in 2 months.
It has been very hard on our family. We have three children. He has not been able to
work for a year now and I don't know if he will be able to return.
He has been fitted for a prosthesis. It has not been
successful yet. He is continually shrinking rapidily and had to be refitted.
At present he has a bacterial infection and we are getting medical attention so that he can heal and try again. He has been in good spirits about his amputation and
has never felt sorry for himself.
I think that I have been the one that has been missing the limb more than he has.
It has been an emotional rollercoaster for me and the children, we have three, and of course for him. He has been strong through the whole thing.
I am writing because I think that he needs some kind of support group to answer some of these
questions.
Is he ever going to adjust to the prosthesis?
Will he always have infections?
How long will it take for him to adjust to the new prosthesis?
I am his wife and I will have been there for him 110% and always will, but I think I need some support too! I have been feeling a little depressed about the whole thing because everytime it feels like we are going forward we take one step back and I know it gets to him to.
He does not mind me writing to you. My husband and I
are in this together and we both need support.
Please e-mail us.
Sincerely
sammy ballz <ballz961@hotmail.com>
USA - Saturday, April 18, 2009 at 14:53:50 (GMT)
I have a friend who lost his right hand in a farming accident some years ago. His stump is to where his wrist was.
He has never complained and has adjusted incredibly to using his stump just like a working hand on the farm. He does not wear a prosthesis.
A couple of months ago both his parents were killed on the farm in a tragic accident and he is now running it on his own (currently with loving help and support from our small rural farming community).
My husband has been helping him on the farm and has identified that he is in the mid stages of carpel tunnel syndrome in his left hand/arm - which is of great concern.
He is also experiencing pain and discomfort on the end of his stump and the underside of his forearm from having to do so much more with his stump than he used to.
My husband was wearing protective gloves and said it was hard work on his hands.
What we need help with is finding a protective leather gauntlet or something of the like that can fit over his stump and up his forearm, cover the stump and not fall off.
Does anyone know of such an item available or anywhere to search or contact about getting one made.
Thank you so much for reading this and if anyone can help us help him - it would be appreciated beyond what words can express.
Sarah Stanaway Kemp <sarah@arty.net.nz>
New Zealand - Thursday, April 02, 2009 at 01:11:23 (GMT)
Hi Dan,
C.P. Wayne Kuniuk of San Francisco Prosthetics asked me to send you an e-mail regarding some needed components for a mission the Barr Foundation is involved in.
Bob Frank is a prosthetist from NY and has made 3 trips to Ibarra, Ecuador where he works with a prosthetist and technician in a clinic that was started by Club Rotario de Ibarra.
Since the clinic has opened, they have fitted 70 patients.
Their goals is to provide prostheses for 100 amputees this year.
They have already evaluated 50 amputees on Bob's last trip in January.
He will be returning in May and is need of the following components.
30 male and female socket adapters, 4 hole and 3 or 4 prong, with rotation and without 50 foot bolts and pyramids for "Trulife" feet.
Wayne thought you might be able to send out a request to your mailing list (or web site) to see if anyone has any old prosthesis lying around.
Thank you in advance for your help.
Eva J Hughes, Executive Director
The Barr Foundation
BR>
136 NE Olive Way
Boca Raton, FL 33432
HYPERLINK mailto: t-barr@t-barr.com
HYPERLINK http://www.oandp.com/barr
www.oandp.com/barr
561-391-7601 (Phone and Fax)
Eva J Hughes, Executive Director, The Barr Foundation <t-barr@t-barr.com>
Boca Raton, Florida USA - Wednesday, April 01, 2009 at 19:15:43 (GMT)
hi, my name is jeanette anderson. i survived an accident on december 30, 2008 that killed the most beautiful man on the planet, fritz hayden, of austin, texas.
fritz and i were riding together on his bike that afternoon to see a friend when a man driving a ford f-150 passed out at the wheel, crossed the median and hit us head-on. we were each traveling in excess of 70 mph when we crashed and fritz was thrown into the oncoming traffic lane. i spun across the road into the ditch. witnesses who saw the crash said they thought "i was a tire being blown off the truck."
i never lost consciousness at the site of the crash, but i never spoke with fritz again, either; as we were on opposite sides of the freeway, according to the accident report. fritz died that day of massive head trauma.
i endured seven surgeries in the six weeks i spent at brackenridge hospital in austin. i lost my right leg and am awaiting fitting for a prosthesis. the nurses at the trauma floor told me that "i should have died" given my massive injuries and internal bleeding. i received forty-seven pints of blood throughout my procedures to stop the internal bleeding. i am grateful for the gift of my life, but i am still in mourning.
my heart is still broken from the loss of my friend. his friends held a benefit within a week of the crash and raised a generous sum of money as well as an outpouring of support for me and my father. their love and support was transcendent and healing for both of us. fritz's family, as well, reached out to us in love and kindness. for these gifts, i am humbled and indebted.
i am seeking the contact of other crash survivors or of friends of fritz's to sustain me as i recover from this horrible event. please write.
sincerely,
jeanette
duluth, minnesota
Click here to Email
Garry Van Kirk
Bikers Accident Survivor Forum
bikeraccsurvivor@bacsuv.com
B.O.L.T.
Phoenix, Arizona
Supporting Our Right to Ride, Supporting Bikers In Their Time Of Need.
You can only protect your liberties in this world by protecting the other man freedom.
~Clarence Darrow~
Garry Van Kirk <truemensa@msn.com>
Duluth, Minnesota USA - Sunday, March 29, 2009 at 21:56:12 (GMT)
am a forty-four year old woman with an aka of my right leg.
I was riding a motorcycle with a friend in Austin, Texas in december 2008 when we were hit head on by a Ford F-150 traveling in the opposite direction.
My friend, Fritz Hayden, was killed that day; and I spent two months in the hospital recovering from my injuries and the resulting seven surgeries.
I feel very isolated in my experience and I am wondering how to talk to or meet other amputees. I am in the process of fitting for my prosthetic and am still experiencing a lot of pain and discomfort.
I am a divorced parent of two sons, and I have had to live with my father while I recuperate. Any wisdom to be shared? Any contact information?
My email address is jeanetteanderson@charter.net.
Thanks!
"utterly human, divine and awake."
--Dorriane Laux
Jeannette Anderson <jeanetteanderson@charter.net>
Duluth, MN USA - Sunday, March 29, 2009 at 21:30:26 (GMT)
I live in Maine and love to swim in the ocean. I wear a prosthesis to do this and try to use old legs so that I am not destroying my working legs. Currently, I am need a left foot around size 12 womens (10 mens).
Do you have an old left foot that you would be willing to part with? I am not picky about type, etc. or even about the size.
Thank you
Sue <smurray039@aol.com>
Maine USA - Saturday, March 28, 2009 at 02:17:04 (GMT)
Jaye Alynn BS, CPT, NTP, MNT-c...
1) I highly recommend the ERTL Procedure for your B/K amputation...The ERTL details are located elsewhere on this web site
2) There are no limitations after surgery. However you won't be able to run as fast as you did before surgery unless you have a specific carbon fiber running leg fitted.
3) Support group forums are available on the Amputee Coalition of America web site (GOOGLE it)
4) I had a B/K amputation in 1964. Today I remain an active & current Instrument Aircraft Flight Instructor.
5) the only limitations I see are those imposed on yourself.
Good Luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 26, 2009 at 19:28:15 (GMT)
I saw a post from you on an amputee networking site and was wondering if you could provide some help.
I'm a 45 year old female. After a lifetime trying to salvage a congenital club foot, the parts are worn out and I've scheduled a BKA this November.
Can you share with me what you've run into as 'limiting'.... .quality support forums.....
Anything you have to share is greatly appreciated.
Wellness Partner
Holistic Nutrition Therapist and Certified Personal Trainer
Apex Recreation Center
Jaye Alynn BS, CPT, NTP, MNT-c <greyvulf@comcast.net>
USA - Thursday, March 26, 2009 at 19:15:20 (GMT)
This is Steve Bogna again.
I told you about my passion to alleviate pain.
I have been progressing with my Night-Kap.
Hanger Prosthetics invited me to their Education Fair in Reno, NV, to talk about it in front their workshop. I think it was a big hit. They all pelted me with questions afterwards, (No, I wasn't pelted with eggs....) They are now testing a unit out on a patient to confirm that it truly can be a benefit for people.
My website has been put together to a decent degree. I really hope to get production underway soon. There are a few issues left, like getting the optimum sizes down for each type of amputee.
But, for the most part, it has been received well, and I have worked out most of the kinks.
www.night-kap.com (Patent Pending)
Through loads of research I was able to confirm that HEAT really does play a role in fighting pain. (Through the reduction of nociceptor activity).
It also allows for better blood flow by dilating blood vessels,which is important to the healing process, as well as long term health...
All in all, I think I'm getting somewhere, and perhaps people will soon know how good the Night-Kap is.
I've met several amputees that I wouldn't have otherwise; I like working with the different challlenges and hope it continues to be a positive journey.
I hope you're doing well. If all goes right, I'll be in Atlanta in June for the ACA convention to exhibit my invention there.
Sidewinder Solutions
Makers of the Night-Kap
Steve Bogna <stevebogna@gmail.com>
USA - Monday, February 23, 2009 at 21:31:28 (GMT)
Hello...
I am a high power lineman. I lost my right leg after 16 surgeries on the right and 3 on the left due to a fall smashing both legs.
I walked for 3 years on a flex foot with no expectations, but got around very well considering. I was able to climb 200'+ high voltage towers...so back to work I went YEA!
I heard of a new foot so I did some checking. I found out insurance probably wouldn't pay for it so I shelled out the money and got it shipped to Spokane with a lot of anticipation.
It was weird to get used to. Going up steps was great but at the top of the stairs it would hyper extend my knee (very painful and unsafe).
I was getting used to it finally BUT it wouldn't take an electrial charge so I had to send it back. That took 2 months.
It does strange things. Sometimes when on creates its own chattered movement. The foot will migrate down so the toe is pointing way forward causing more hyper extension ( oh boy goody) and now we are back to having charger issues.
I have a family that went without so I could try this foot trying to make my life better.
OUCH that hurts after getting it and finding out it's JUNK.
I feel obligated to let my fellow amps stay clear or at least buyer BEWARE. These are close to $30,000 each!
Ask me what I'd like to do with it. I can't get anything for it on eBay.
I should have known when they told me "once I put it on it's mine," NO RETURNS.
Well I get so damn frustrated with it I'd love to go back to my flex foot and THROW THIS JUNK THROUGH THEIR FRONT WINDOW or shove it where it might not be such a comfortable fit.
I haven't even had it a year!
So fellow amputees spread the word that you heard of a high power lineman in Washington state that had a Proprio foot less than a year and _____HATED_____ it.
Too bad too. I fell in love with the concept.
FOR SALE VERY SLIGHTLY USED PROPRIO FOOT
EXTREMELY CHEAP
Give me a call or drop a note.
(509) 429-7353, madmuttly@yahoo.com, sruss@pn.usbr.gov, 1015 S. Clark ave. Republic, WA. 99166
steve russ <madmuttly@yahoo.com sruss@pn.usbr.gov>
Republic, WA USA - Sunday, February 22, 2009 at 00:57:57 (GMT)
Hi fellow amputees,
I have a below knee amputation as a result of a car accident in 1985. I was the guy on the motorbike.
I have seen a post on this site stating that they are not aware of any exercise equipment for amputees.
I am writing to let you know there is specific designed equipment available.
After suffering intense pain for over 6 years as my stump grew spurs and grew outward through the bottom of my stump, I had a second amputation and faced a long hard recovery with physios that had never met amputees before in remote parts of New Zealand.
Frustrated I employed a professor of sports and exercise science at Massey University to conduct a literature review to show the needs of amputees and the guidelines to the equipment that would be required to assist their requirements.
I have developed and clinicaly tested with MidCentral Health and NZALB a machine called the "Limbar(TM)" under the company name Hydraujoint(Ltd).2002
If any amputee would like to find out more about any of my machines or when they will be available in their country please email me.
I am currently in Australia and New Zealand with interested parties looking at manufacture rights in several more countries. Including Thailand, Cambodia and Bali.
If you are a manufacturer of either prosthetic limbs or exercise equipment and interested in the manufacture and distribution rights in your country or state please also contact me via email.
Aiming to make rehabilitation and exercise machines available to all amputees that require them.
Stephen Kemp <stephenk@mobileemail.vodafone.com.au>
Australia - Saturday, February 07, 2009 at 13:41:15 (GMT)
Research On The Quality Of Life
I am a doctoral researcher in psychology at City University, London UK.
I am running a study exploring the quality of life of people with acquired or congenital limb loss and am looking for people from any country to complete a 20 minute questionnaire via the internet exploring the quality of life of people with limb loss.
In summary, the study looks at how people view their own quality of life in relation to other people, and whether they feel their quality of life has changed over time. The findings of this study will contribute not only to our understanding of how we view ourselves compared to others, but also to gain a deeper understanding of how people adapt to circumstances in their lives.
As part of the questionnaire you will be asked to provide some demographical information (e.g. age, gender), the circumstances of your limb loss, indicate whether you are living with any medical conditions, and will be asked to rate your own quality of life and make judgments about the quality of life of other people. Your participation and responses to this questionnaire will be completely anonymous and confidential.
For completing the questionnaire you will be given the opportunity to enter a prize draw with a chance to win a £20 (or equivalent) Amazon online voucher.
For more information on this questionnaire and to participate, please click on the link below, or cut and paste the link directly into your browser. You must be 18 years or over to participate.
http://www.staff.city.ac.uk/psychstudies/EW5a/
If you have any questions about the study or have any problems accessing the site, then please email me at
e.l.walsh@city.ac.uk.
Thank you
T: +44 (0)20 7040 4578
City University, School of Social Sciences, Northampton Square, London, EC1V 0HB, UK
Emma Walsh, Doctoral Researcher, Dept. of Psychology <e.l.walsh@city.ac.uk>
London, England - Monday, January 12, 2009 at 21:29:28 (GMT)
Hello,
I Am having difficulty locating other people with a Lisfranc (or Chopart) amputation.
None around here that I've been able to locate.
Do you know anyone ?
My surgery was 11/17-08.
325.829.1961
CHARLES BRIGGS <cwaynebriggs@sbcglobal.net>
USA - Sunday, January 11, 2009 at 13:33:49 (GMT)
Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics says, "I have done this by having the person sit on a six inch thick square of soft pottery clay covered with some thin plastic.
The person gets in the chair and motors around for some time. High pressure ares will be displaced by body weight and movement. You have to add or subtract clay until uniform pressure is achieved.
I then use magic to turn this molded clay into a cool high tech seat cushion made from a foaming silicon.
It works every time!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 06, 2009 at 04:40:19 (GMT)
I am an occupational therapist writing on behalf of a client.
He has a high above knee amputation of his right leg, and he had a complete hip disarticulation on the left in early '08. While in the rehab centre, he was prescribed a high profile ROHO cushion for his power wheelchair. This initially seemed fine, but he was also on a lot of pain meds at the time.
In recent months, my client has been constantly uncomfortable while sitting up in his chair. He is in excrutiating pain a lot of the time, particularly on the left where he is actually weightbearing directly on the pelvic bones only.
He is feeling very hopeless that he will ever be comfortable again.
We have tried the Quattro ROHO as well, and had a consultation with a seating specialist who completed some pressure mapping, but nothing we have tried with this client has improved his comfort level.
I am asking for your help to connect with people who have similar amputations to find out what they are sitting on - they are truly the experts after all.
Any links you could provide us or specific contacts would be extremely helpful.
Thank you in advance for whatever assistance you are able to provide.
Sincerely,
Genny Neufeld, OT Reg., (Ont.)
Occupational Therapist
Saint Elizabeth Health Care
Genny Neufeld, OT Reg <theneufelds@rogers.com>
Ontario, Canada - Monday, January 05, 2009 at 23:31:13 (GMT)
Thanks for your post.
My partner recently became an above knee amputee. He just got his "C" Leg but it is very slow going.
We would appreciate any encouragement, advice or referrals. We need to hear from others who have gotten moving with a "C" Leg.
Thanks and bless you!
Linda <L1ndaGT@aol.com>
USA - Friday, December 05, 2008 at 00:58:31 (GMT)
My name is Tyler Hyatt. I live in Sandy, UT. I'm 26 years old. I have a prosthetic leg amputated above the knee.
When I was 4 years old I was run over by a garbage trunk.
I'm married to my beautiful wife Lindsay of 3 years and we just had our first child June 30th, 2008. His name is Bentley.
I own a Tanning Salon. We bought the business in November of 2007. It has been quite an adventure.
I'm putting myself out there to help promote the
Amp1 Basektball Tour.
If you have a prosthetic limb please contact me or Scott Odom by visiting our web site:
www.amp1basketball.net
I have some videos on YouTube. Check us out.
www.youtube.com/amp1basketball
Thank you!
Tyler Hyatt <amp1basketball@gmail.com>
Sandy, Utah USA - Tuesday, December 02, 2008 at 13:33:06 (GMT)
My Husband is a BK Amputee. He has been a BK amputee for 20 years.
He uses an Alpha Original Gel Style Sleeve for his Prosthesis.
We are trying to find the same thing online, with no luck yet. We are hoping to find it for less, since we have no insurance and they seem to cost about $800.00 each.
Can you help us find this for less?
Thanks!
Limpy's Wife
CASSANDRA HAWES <riversedgelabs@msn.com>
USA - Friday, November 21, 2008 at 16:05:51 (GMT)
I am very new as an "Amputee", and hope you can help me in some way.
I was born with a very rare, severe type of Rheumatoid Arthritis, and have had many,many operations for this complaint.
Recently, I had my foot amputated from an infection from Arthritis. It was either me or my foot, so thought best if I choose 'my foot'.
What I would like to know, is---do you hear of other folk becoming amputees from arthritis, and how they managed?
I do not have a prosthesis, as it is just early days, and my attitude towards this is very healthy, and can laugh at my self.
I also have a wonderful husband who is always there for me.
Hoping you can assist me, in some way.
Yours in Australia
Pat kohout oam <salisbury83@bigpond.com>
Australia - Thursday, November 13, 2008 at 17:49:15 (GMT)
Thank you Dan for the post and information.
I have decided that the amputation is the best thing that I can do. My doctor agrees but we are having a hard time with workers comp. approving the surgery. I am a diabetic and fell and injuried my lesfrancs two years ago. I have developed unbearable pain in the area and one doctor only wants to feed me pain medication. Most recently he advised me that he works with hospice patients and he can get control of the pain.
I informed him that im not dying and would like to get some quality back in my life, not more pain medication. But because my surgeon can not identify the exact reason for the pain they are denying the surgery.
He is of course appealing their decision as its being reviewed by a doctor who doesnt know me or care to know me. That is why I have been searching for ppl with simular situations. so that I can share these with my attorney. I can not find any information on the internet that would help in my case, most are against amputation.
Its been hard as the CRPS is only a possibilitly and not a sure thing. The sure thing is that I am tired of the way my life is headed and has been for the past two years.
Once again your website is an excellent way for amputees to get together and help each other, keep up the good work.
Thanks again for your help.
Dan Halsell <sgtyogi@sbcglobal.net>
Ione, CA USA - Tuesday, November 11, 2008 at 15:00:39 (GMT)
Dan,
Please read my story of voluntary amputation on this web site.
The amputation was more than 40 years ago. I have never regretted the decision to amputate my left leg below the knee. Today I remain an active Instrument Flight Instructor, walk normally without pain, run, dance and do EVERYTHING I used to do BEFORE the amputation.
Do it!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 11, 2008 at 14:57:17 (GMT)
--------------------------------------------------------------------------------
My name is Dan Halsell. I am facing amputation after two years of pain and suffering after a lisfrancs injury.
I have had stents in my left leg, and an emergency bypass after the stent was plugged after the surgery to repair the lisfranc injury.
I have been told that everything that could be done has been done, and have been told by 2 doctors that BKA is the next and only thing that can be done, or live the rest of my life on pain medications and in a chair.
I have lost all quality of life. To get to the point I am looking for amputees who have had similar problems, who eventually decided to have the amputation.
I would like if at all possible if they could email me with the end results. The insurance company turned down our first request for the amputation and if at all possible I am looking for communication with those who have positive results.
Sincerely
Dan Halsell <sgtyogi@sbcglobal.net>
USA - Sunday, November 09, 2008 at 15:33:39 (GMT)
Hi everyone.
I don't know if you remember me but I posted a comment asking for advice and support for my brother in law Shane Cahill who lost both his hands.
I just wanted to say a huge thank you to everyone who contacted me and was on hand to give myself and my family advice and support. You are such an amazing bunch of people! I can't tell you how much your stories have helped me to stay strong for my brother in law.
An update on Shane.... He is out of intensive care and will be leaving the hospital in 6 days after 65 days in UCSD and he is ready to get the Hell out of there!
He is walking well despite the burn he recieved on his hip and his stumps have healed well he is already trying to use them. Nothing will keep our Shane back. Hopefully he will get some body powered hooks in the next week or so and will begin training his muscles for the I-Limb!
Maybe one day we will be able to help someone who is going through what our family has gone through.
One thing I will say is when this all happened we cried we screamed we went mad. Why us? Why Shane? what has our family done to deserve this? We have already been through so much already. We would get mad when people would say "Things happen for a reason" and "Something good will come out of this".
You know what...that something already has!
We are so lucky to have Shane here with us alive. It has brought us so much closer as a family. We have so much love and support for each other that nothing will stand in our way! So many people have been around to support us and we are so very thankful for that.
Once again thank you. A blog was set up for Shane
www.shanedogblog.blogspot.com
Check it out!
Much Love and Thanks
Emma Cahill & The Cahill Family <emmacahill82@yahoo.com>
USA - Saturday, November 08, 2008 at 03:50:56 (GMT)
Do you have any advice about the effectiveness of Ohio Willow Wood electric vacuum pump system?
I like to hike and ride my bicycle agressively enough where I sweat during most of a four hour activity. I am also concerned about being out in the woods and having the battery lose all of its charge while it is trying to maintain a vacuum on a sweaty stump.
The Harmony system I currently use has a mechanical vacuum pump that is designed to suck the sweat out through the pump and sometimes it works when the vacuum pump isn't broken.
!
Thank you,
Ron Riter <ronriter@hotmail.com>
USA - Saturday, November 08, 2008 at 00:07:18 (GMT)
I have a son, Joel Armin-Hoiland age 22, who is facing an "elective" amputation of his lower leg.
Can you help with this, or give us some names?
Thanks
Andrea Armin <AArmin-Hoiland@co.humboldt.ca.us>
USA - Thursday, November 06, 2008 at 18:24:49 (GMT)
Do you know of any place that will accept and distribute donations of clothing tailored for arm amputees?
My husband is an attorney in San Antonio, Texas and a left-arm amputee. He has a lot of business suits and dress shirts with the left suit arm tailored for his stump that he no longer can wear. I would prefer to give them to someone that can use them.
Sincerely,
Alisa Strandmo <chemteach1@juno.com>
San Antonio, TX USA - Sunday, October 19, 2008 at 14:12:26 (GMT)
Subject: Experiences with Otto Bock e-pulse pump
Hi all,
A friend of mine was put on an Otto Bock Harmony e-pluse pump to help improve her walking (lean, slight build, 6" BK) and it certainly helped.
Unfortunately these pumps seem to be failing at an unacceptable rate.
Her first pump worked for a little over 3 weeks and then wouldn't run reliably. It would just quit operating for no reason, but would work for a bit if powered down and restarted.
That one was replaced under warranty (and an admission that there was a design flaw) and the new one has lasted all of a month before it no longer held a charge. It lasts all of 3 hours instead of the usual two days. And no, there is no leak, it cycles as infrequently as it did before (2 secs every 5 minutes).
Are others having similar issues with this pump?
I have seen posts elsewhere that suggest it's a piece of junk.
It certainly has some design flaws, like being flat, when
all prothetics are cylindrical, but is there is any point it keeping it if it's just going to keep failing until the warranty runs out?
Is there something else she should consider using?
Thanks in advance for your inputs.
Doctor Bob <imcra2@yahoo.com>
USA - Friday, October 17, 2008 at 18:41:49 (GMT)
Dear Mohammed Shamil Abdo in Addis Ababa, Ethiopia...
Your request was posted to the www.stumps.org GUESTBOOK at 1453 UCT Tuesday October 14th, 2008.
The very best of luck in securing the monies needed or the donation of a pair of used prosthetic devices.
Used prosthetic devices cannot be resold in the United States of America but they can be either sold or donated to citizens outside our borders. Perhaps someone reading this posting will have had a relative or amputee friend that has passed away and will send you the legs you need.
Good luck in your quest!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 14, 2008 at 15:04:37 (GMT)
Dear Sirs/Madam,
Name Mohammed Shamil Abdo
Age:46
Marital Status Married
Children four
Nationality:Ethiopia
Addis Ababa
Email Addres:mshamil2000@yahoo.com
I am living in Addis Ababa capital city of Ethiopia. With unexpected accident I have lost both my legs before twenty years and now I am in big trouble to face the challenge of life.
Once upon a time after I have lost my legs one charity organization which is found in Ethiopia provided me a man made two legs by sending me to Germany. However, because of long time service my artificial leg put out of service as a result I'm in bed.
So that, my children and I am in big crisis and I'm afraid my children's will go out to street.
Unfortunately artificial leg is not found in Ethiopia. Hence I identified that man made leg is produced in South Africa Nation with a cost of 7,000.00 - 9,000.00 dollar per leg.
When my best friend go through web site he found out your company address and fortunaltely with the help of almighty God we are in identical situation.
So that I'm begging you you to help me to the best of you.
Since you feel the very depth of the symptom I expect to give me your hand.
If you are willing to provide me the charity I will send you through my full address and picture of mine. I'm looking forward to see you soon and say thanks in advance for your cooperation.
Thank you!
Mohamed Shamil Abdo <mshamil2000@yahoo.com>
Addis Ababa, Ethiopia - Tuesday, October 14, 2008 at 14:50:58 (GMT)
I thought you might be interested in the solution we found for the student's archery.
Here's my original query:
Hi,
I am a teacher of an eighth grade boy who was born without a left hand.
His arm ends about halfway down the forearm. He has developed many compensation techniques and can do most activities, including baseball, golf, biking, and playing the baritone horn.
This year the gym class plans a unit on archery at a local sportsman's shop that will be providing equipment for the kids to use as they learn archery. The student had a prosthesis in primary school, and he hated it, and he found it easier to work without it, so he broke it.
Do you or your members have any suggestions of adaptations to enable him to do archery with no left hand?
Thank you!
Leslie or David
USA - Wednesday, August 20, 2008 at 04:14:25 (GMT)
The local sportsman's shop worked with him and found that they could attach a simple wristband to the bow. The purpose of the band was to keep the bow from falling to the ground after the shot. By holding the string, the student was able to use his stump to raise the bow and he was able to sight. When he let go of the string, the arrow flew, and the bow flopped down, hanging from the wrist strap, but did not drop to the ground.
Thank you for the ideas you gave us to look at.
Leslie or David <muddleaged@frontiernet.net>
USA - Sunday, September 28, 2008 at 21:15:26 (GMT)
Colin in South Africa...
The "C" Leg is usually available on eBay for $5000
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 26, 2008 at 13:30:20 (GMT)
Hi there
I am Colin from sunny south africa.
I too am a TKA (through knee amputee).
Said bon voyage to my left leg in July 2005 during a repair to trackless mining equipment.
An operator ignored his supervisors instructions and crushed me against the machine that I was working on which resulted in crushed pelvis,intestines, bladder and an open fracture to my femur which after 10 days had to be amputated due to gangrene setting in.
I was shocked at what had Just happened, as its amazing how ones body deals with trauma. No pain except for the initial crushing.
I was hospitalized and medically comatized for 3 months.
I was very negative at first, but then realised I have a beautiful loving wife, daughter and above all we have JESUS. There was a reason why this happened, but I believe that GOD does not have to do ANYTHING ( Some people argue that, God, why do you heal cancer patients, but not us amputees?)
He (GOD) educated people and gave us TECHNOLOGY, such as the C-LEG, bearing in mind that the amputation will be a reminder to Always walk the straight and narrow and focus on what's really important, such as the LORD, family and friends.
Here in South africa workers compensation is somewhat lacking as they only give you cheap prosthesis's.
A C-LEG is a definite NO-NO no matter how you try to motivate it.
I am currently purchasing one (a C-LEG) from my own, "pocket" as my employer SANDVIK mining and construction are in the process of loaning me the funds to purchase said leg.
I will have to refund them once the court case is settled.
I am forever grateful to them, they are a first class employer.
You see, it was the mines neglegence and not my employer, as the mine was the 3rd party.
Meantime I'm continuing with my life and making the best of it.
Keep well
Regards,
Colin Ginsburg <colinginsburg@gmail.com>
South Africa - Thursday, September 25, 2008 at 22:19:52 (GMT)
My invention is coming along.
It’s me again, the Sidewinder. (Steve Bogna). I just wanted to let you know that I am now expecting the prototype of my invention. I plan to make some presentations and get people familiar with the product, and get their feedback on my heated stump cover for residual limbs. I still don’t know if it will be a big hit or not.
I know the heat can alleviate a fair amount of discomfort, and I also believe by keeping the limb warm, you will reduce the frequency of the phantom pains----I am not claiming that it will affect the severity of the spasms, but I think that it can be beneficial by reducing the number of times that those spasms hurt you.
I know the humidity affects me, so does cold, and if I shiver, it almost always triggers an onset of spasms for a little bit. But If I am warm enough, I rarely get spasms.
My product is designed for the “Down time” when you are not wearing your prosthesis. Wear it to bed if necessary!
>BR>
I‘ll keep you posted, since my goal at Sidewinder Solutions is to provide amputees with the tools they need to live pain free. I think I’m onto something with this invention.
You know, I must say that it is nice to be able to converse with amputees and compare notes, etc.
I can’t believe that I just tried to go it alone all those years with out any help from others. Of course, the world didn’t have the internet in 1979, too. I knew my situation was extremely unique with my vast amount of injuries, and to me, my amputation was just a small part of my recovery process, so I was never hung-up on it. It probably didn’t help my mental outlook when my dad died a year after my wreck. My amputation never set me back; as I was looking forward to it after all those failed surgeries. I just assumed that nobody could relate to my predicament, so I never turned anywhere else for those answers. In my mind, since my dad was gone, I knew I needed to find them on my own.
I have wandered down many dark avenues in search of said answers, some just for peace of mind, some for physical benefits and pain relief. Yet, the process of trial and error is costly and time-consuming. It’s so much better to have someone tell you what will work so you can go right to it.
Your website is incredible. Keep up the good work.
Steve Bogna <steve@cbdcabinets.com>
USA - Wednesday, September 17, 2008 at 21:35:55 (GMT)
Sage Loats in Oakland, CA...
Stumps 'R Us meets monthly in a different location every month. The meeting place, time, location and cost is in the invitation always posted on page ONE of this web site.
Our September meeting (Saturday September 13th, 2008) takes place at the GAYLORD India Restaurant in Sausilito at Noon.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 08, 2008 at 23:27:22 (GMT)
Mr. Sorkin,
I am a counselor working with a 26 year old woman who is facing an above knee amputation due to cancer. Searching the internet looking for resources for her I came across your website and looked to see if you have regular meetings or a way for her to find a community.
Right now she feels very alone, scared, and angry. Please send any information and I will pass it on to her.
Thank you for your time.
Sincerely,
Sage Loats <sloats@haartoakland.org>
Oakland, CA USA - Monday, September 08, 2008 at 23:22:14 (GMT)
My name is Emma Cahill and my husband and I live in San Diego with my brother in law.
On Wednesday he was at work as a window cleaner and was electricuted by 12,500 volts.
Thank the lord he surived but after many surgeries they told us they are unable to save his hands and he is due to have surgery on Monday to remove them.
The internal and external damage was too much.
Shane (my brother in law) was the most active person I know. He rock climbed, BMX, moto'd 50cc well think of everything extreme and he did it!
It's such a shock to everyone. The worst part is he is in a medically induced coma and will wake up with no hands.
I have been researching prostetic hands and have come across the I-Limb. I just wondered if anyone you know through your group has been in his situation. I want to learn as much as I can to help him through this extremly hard time.
He is only 34 and we know with everyone's support he will do everything he did before but just differently.
Any advice, support or information would really help our family right now. We know we have a long recovery mentally and physically ahead of us and we all would like to prepare and have information at the ready for when Shane wakes up.
Thank you!
Emma Cahill <emmacahill82@yahoo.com>
USA - Monday, September 08, 2008 at 13:23:29 (GMT)
Dave Paschold in Lincoln, NE..
Yes I have. Molly is an Honorary Member of Stumps 'R Us. She attends very few meetings however.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 21:44:40 (GMT)
Have you seen this one?
It is Molly the horse amputee with working prosthesis.
Dave Paschold <dlpaschold@landolakes.com>
Lincoln, NE USA - Sunday, August 31, 2008 at 21:42:04 (GMT)
Ron Mendricks in San Francisco...
Welcome...
A Stumps 'R Us Survival package is being sent to you.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 21:36:53 (GMT)
New to Stumpdom.
Ronald Mendricks <rmendricks@yahoo.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 01:32:04 (GMT)
Paul & Barbara In Healdsburg, CA
Wayne Koniuk, C.P. is Stumps 'R Us Official Prosthetist. Whatever advice he gave you I would wholeheartedly endorse.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 27, 2008 at 19:52:45 (GMT)
I’m Paul Micallef and a new left foot amputee in Healdsburg, CA.
After talking to Wayne Koniuk at S.F. Prosthetics, I got some conflicting advice about a good prosthetics outfit in Santa Rosa.
Does Stumps R.Us have any recommendations about prosthetic makers in that area?
Thanks
Paul & Barbara <paul@vintage36.net>
Healdsburg, CA USA - Wednesday, August 27, 2008 at 19:48:14 (GMT)
Maryanne Taylor...
BR>
You need to go back to your CPO. It sounds like your leg is not adjusted right. I am a bilaterial bka myself and I walk without any aids whatsoever.
If you want to...E-mail direct and I will answer all of your questions. If I can't I will send you to someone that can.
Jack Pickerd aka PEGLEG JACK
JACKSONVILLE, Texas USA - Wednesday, August 27, 2008 at 17:48:56 (GMT)
I have been an amputee for over a year. Lost the leg below the knee to diabetes. I did not get PT for six months and now I am having problems walking on my prosthesis.
I am 64 and in good health both physically and mentally. The problem is that my leg seems crooked and buckles when I walk on the walker.
I ride an exercise bike for 15 minutes a day and often twice. At PT they said I have learned all they can teach me but I still can't walk for more than a few minutes on the walker..
Any suggestions??
maryanne taylor <maryannet8@hotmail.com>
USA - Wednesday, August 27, 2008 at 02:08:13 (GMT)
Diana McBride...
Did you ever think about using just a regular towel to sit the gentleman on?
Just fold a regular size towel in half lay on the board and scoot on to the transfer board with the towel underneath his botton. This will make sliding
over the transfer board much easier. He will be able to get into the wheelchair and if it is electric with arm rests that raise it will make it alot easier.
I had tried this method after my first amputation (LBKA) in August 200., Then when I had my second amputation (RBKA) in February 2004 I just would raise the arm rest and scoot into the electric wheelchair and no problem.
You would be amazed at how strong your arms will get lifting your own body weight.
You didn't mention why he has such a tender bottom maybe that is something you need to check into. An air cushion or foam w/gel cushion would be of help.
It has been awhile since I've been to this site so had to read all the latest messages that have been posted since January 2008.
I had written at that time that I had gotten an open wound on my right leg. I had to finally go to see a wound care nurse and then a doctor. Now I'm having to go back to the doctor as the new PA at my clinic doesn't like the look of the right stump.
I tried the vacuum system, Anthony put me into, BUT it was causing too much pressure on my knee cap. So he had to attach a strap to hold on the new socket and leg. I sure miss my pin liner.
A couple of times I've went to get out of the truck with a small step stool and I have lost the leg. Sorta funny
really as my daughter was helping me the day and I hollered "I just lost my leg". So she ran back to me and got my leg and then ran back to get the wheelchair. When all of us are out and about we have a ball.
Hey life goes on, just because you lose some limbs doesn't mean you can't still have a life. I baby sit with my two grand children with my husband help, of course. HA! HA!
Poor baby he gets to do the cooking.
Well that is my news for this visit.
Janet Lee Toomey <wjtoomey@sbcglobal.net>
Herrington, KS USA - Monday, August 25, 2008 at 02:43:25 (GMT)
Leslie or David,
The solution (TRS) for you may be at this web site recommended by Stumps 'R Us Certified Prosthetist Wayne Koniuk.
http://www.oandp.com/edge/issues/articles/NEWS_2008-07-02_02.asp?searchquery=Black+Iron
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, August 22, 2008 at 17:05:06 (GMT)
Hi,
I am a teacher of an eighth grade boy who was born without a left hand.
His arm ends about halfway down the forearm. He has developed many compensation techniques and can do most activities, including baseball, golf, biking, and playing the baritone horn.
This year the gym class plans a unit on archery at a local sportsman's shop that will be providing equipment for the kids to use as they learn archery. The student had a prosthesis in primary school, and he hated it, and he found it easier to work without it, so he broke it.
Do you or your members have any suggestions of adaptations to enable him to do archery with no left hand?
Thank you!
Leslie or David <muddleaged@frontiernet.net>
USA - Wednesday, August 20, 2008 at 04:14:25 (GMT)
Diana McBride...
Being a bilateial bka myself, I have on occasion used a transfer board. I don't like them.
Have you tried having your amputee sit on a small pillow and then slide across the board using the pillow to overcome the friction?
Make sure the board is really stable and will not tilt in either direction or it will give the person the feeling that he is falling off.
You may need a wider board, where the person can grip the board on both sides to stablize himself.
I can't remmember where I read it but there are Federal programs that will buy and build a van where the drivers seat is taken out and replaced with a locking wheelchair in the driver's position.
I hope this helps.
Jack pickerd, aka PEGLEG JACK <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Monday, July 28, 2008 at 19:39:21 (GMT)
Diana McBride somewhere in the USA...
As far as I know you are doing all you can with the transfer board.
Perhaps someone reading the GUESTBOOK has a better idea.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 25, 2008 at 20:47:07 (GMT)
I am a physical therapist and am working with patients with amputations.
I have one patient currently who has bilateral transtibial amputations, both within 2 months. He can not yet be fitted for prosthesis.
We are having some trouble with transfers.
Text books often recommend slide board transfer but he has a tender back end and the slide board is not comfortable.
Any suggestions on how to transfer while keeping him from sliding forward onto the floor?
Thanks so much
Dianne McBride <dm72003@hotmail.com>
USA - Friday, July 25, 2008 at 20:44:18 (GMT)
Peter Klauer...
1) The pain at the tip may decrease with time as your stump gets used to the pressure of Physical Therapy.
2) You may be allergic to the GEL Liner. Try a different liner.
3) Use Self Hypnosis before PT
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Thursday, July 17, 2008 at 11:05:06 (GMT)
I read your advice to James Buckley with interest and have a question.
I am an AKA as of March of this year. I am in a C-Leg and working with a good PT and prosthetist. I
think.
I am in the early days still but after an hour long PT session learning how to use my new leg, the end of my stump hurts too much for me to put my full weight into the socket.
My prosthetist has worked hard and made multiple modifications and now no part of the socket touches the part of my stump that hurts, so I guess that it is just pressure from the gel liner.
There is no outward evidence of soreness and the MD finds nothing wrong with the stump.
I have been told that the stump will get used to the process and the pain will become less and my walking time longer with time.
Does this sound right to you?
I should clarify by saying that at the begining of a PT session there is no pain.
Peter Klauer <peterklauer@gmail.com>
USA - Thursday, July 17, 2008 at 10:58:43 (GMT)
James Buckley in Saginaw County, Michigan...
Please have your Certified Prosthetist fit you with a NON-PIN insert. The Pin at the tip is causing discomfort you do not need
In addition you can also reduce the tip pressure by inserting a Dr. Scholl's Lambs Wool piece at the bottom of the socket to cushion your sensitive stump tip. Any Drug Store will carry this inexpensive product.
You shouldn't have to, "Get Used To Any Pain Or Missfit".
It is the job of the Certified Prosthetist to fit your socket perfectly so there is no discomfort whatsoever.
Adjustments have to be made from time to time if the stump changes shape because of weight gain or loss but even that should not interfere with your comfort.
If your Certified Prosthetist balks at changing from the Pin device to another more comfortable system you probably have a moron for a Prosthetist.
If that is the case find another Certified Prosthetist and Physical Therapist!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, July 15, 2008 at 19:52:20 (GMT)
Subject: New B/KA
Accident date:4-22-08
Prosthetic start date: 7-10-08
I am set up with a pin and lock system.
From the first day using the prosthetic, I have been dealing with pain on the bottom of my limb. After the second day of PT, I notice bruising on the bottom. For the most part I can get up and move for a short period of time with some discomfort. If I rest, then begin to move again the pain intensifies.
PT and Prosthetist are trying to figure out the correct size needed.
My question is: Do I keep working through the pain? Is the bruising a sign to slow down?
James Buckley <obuacalla@hotmail.com>
Saginaw County, Michigan USA - Tuesday, July 15, 2008 at 19:39:17 (GMT)
Just a note to say Thank You, to Jennifer and Pam for the amazing gift they have given to me.
I had no idea 'till reading their recent posts to the GUESTBOOK that I had left such an impression on either one of them. I was so overwhelmed by their letters because just by living with and accepting my disability, unbeknownst to me, I was able give them inspiration when they needed it.
As people with life changing disabilities, what we all can learn from this is that when you’re asking yourself “why” and “what is the purpose of my life now” the answer is truly right in front of us.
Angela Briguglio <angela@goldstonelaw.com>
CA USA - Friday, July 11, 2008 at 19:56:41 (GMT)
I had terrible lightning bolt like shooting phantom pain that did not allow me to sleep. Each night was worse than the previous night. I was at my wits end. Nothing seemed to work until I went to an Acupunturist here in the Los Angeles Basin.
Specifically in the Newhall, Saugus, Valencia area of North Los Angeles, (Now called Santa Clarita or The Santa Clarita Valley, CA)
I met a very intelligent and resourceful acupuncturist. I was lucky!
Her name is A. Young Kim, (661) 251-5390 Address: 18261 Soledad Canyon Road, Santa Clarita, CA 91387
She does accept most insurance plans. She asked me numerous questions before doing any procedures. She has a Bachelor's degree from Korea, and a Masters and Doctorate that she obtained here in the states.
Results were nothing short of amazing.
The first 90 minute session of acupuncture really turned me around.
Beforehand, she asked me lots of interesting questions like, "Are you a fast eater?" or "When you are cold, are your feet colder than the rest of you?" The questions gave her a better understanding of my problems and their causes.
Afterwards, she also gave me a sample of some powdered herbs to mix with water a couple times a day.
I have to admit that my spasms were reduced to nothing! It was like a light switch being turned off. It's a major relief to be let go of that burden, as I'm sure you know.
I hope she can continue to show me other ways to manage my pain episodes.
Just wanted to let you know that I'm feeling better. I look forward to every day now.
Steve Bogna <tbogna001@socal.rr.com>
Los Angeles, CA USA - Sunday, July 06, 2008 at 13:47:27 (GMT)
My name is Garland Creasey ( left above elbow amp).
I am not writing for myself but for a young lady I just met. She is remarkable. I would appreciate any thing anyone can do for her.
She had quadruple amputations and smiles when she talks to you. Her web site is:
http://www.loveoflindsay.com/
A kind word or two from others will let her know she is not alone in her world...
Thank you!
Garland Creasey <GCREAS@aol.com>
Richmond, VA USA - Saturday, July 05, 2008 at 21:29:55 (GMT)
Hello June Valentine,
Such a tragic incident to have happened on Fathers day! May God give you all enough strength to deal with this.
I am 50 years old now and had an accident and an above-knee amputation of my right leg three years ago while traveling in India. It has been a tough ride but for some providential reason, we all seem to get the strength to deal with what is served to us.
I am back into my job, doing all of the needed activities independently.
First few days will go in a daze and one doesn't realize the impact of such misfortune. In my case, I started feeling the hit only after I got a prosthesis and began a semi-active life.
Family support is extremely valuable. In the first few years, there are lot of frustrations because the amputee expects, though not really justified, the close family members to understand every small adjustment the amputee has to make in life. This is where you have done an invaluable thing by directly becoming part of a group.
That is a great beginning.
Your large family is a great asset too. The best advice is not to rush it. As one of the members suggested, it helps a lot talking to other amputees.
Hidy will do just fine. She will be absolutely normal though we all know it is a different 'normal'.
God bless you all!
Vijay Saradhi <vjsara@gmail.com>
New Jersey USA - Saturday, July 05, 2008 at 13:29:52 (GMT)
Hi June Valentine...
My name is Pam Seifert. I am an architect in California.
In October 2003 at 53 I suffered a stroke. Then two years later I had a life-altering blood clot. That one caused me to lose my left leg below the knee.
As you might have guessed I am a member of "Stumps 'R Us".
Your daughter has a big challenge ahead of her. I look at both my health "calamities" as challenges. They've taught me so much. I have a lot more empathy than I had before. I've learned to accept help and even to ask for it when necessary, though that's still not easy.
Living with an amputation is challengeing, but manageable. I found a great prosthetist through Stumps 'R Us. I have now relearned to walk twice as an adult.(I love my physical therapists!) I am able to ride my horses and do much of their care. I can drive and work too.(
I understand that a wheelchair is not a jail , but rather, a mobility tool.)
I attend lots of support groups which are enormously helpful. Yesterday, for example, I went to an afternoon stroke support group at the hospital in Berkeley where I did my acute rehab after my stroke. Then in the evening I met some friends for dinner before we went to our brain injury group in another local city.
I don't know that any of this is helpful, but I would be very happy to talk with your daughter. I don't know what resources you'll find there for her, but it is really helpful to talk with others facing similar challenges.
After losing a limb we are still the same people. I'll share a quote I love: "You don't ever get back to where you were, You get back to where you are going". (I believe our paths are only apparent to us as we live through them and learn as we go.)
Attitude is truly key- as Dan already told you. One woman in our group - a lovely, dynamic, vibrant woman , lost both legs due to bacterial menengitis (breathed in a bad germ!). She lost both legs and a bit of her pelvis too and yet she is vibrant and happy and fun! She once told me about a fellow who was physically in tact. but depressed.He looked at her thinking how glad he was that he wasn't her. She looked at him with his bad attitude thinking how glad she was that she wasn't him.
She has a demountable wheelchair and can drive anywhere. She gets into the driver's seat, disassembles her chair and puts the pieces on the passenger seat. She's travelled cross country that way.
More and more there are wonderful activities and opportunities for those of us with disabilities. It is not easy to accept becoming disabled, but it is easier if we try to live as full a life as possible with our disabilities. It does force us to figure out for ourselves what is truly important to us.
This past week I went on a really enjoyable trip in northern California: There is a program called Access Adventure begun and headed by the great grandson of John Muir. He is a life-long horseman who has m.s. This program carries on his great grandfather's legacy by taking wheelchair accessible horse-drawn carraiges on back country trips for people with mobility challenges- Great fun!
I hope the best for Hidy and her husband and all of you. If I can help, please let me know.
Pam Seifert <PAMSEIFERT@aol.com>
June Valentine in Carney, OK
What a terrible accident to have on Father's Day!
I am sending you via Priority Mail a Stumps 'R Us Survival package to give to your daughter Hidy. In addition by separate E-mail I will Cc several female members of Stumps 'R Us to communicate with Hidy through you until she has her own Internet address. They will share their POSITIVE experience with your daughter
In order to find an Amputee Support group in Oklahoma I suggest you contact the Amputee Coalition of America at
www.amputee-coalition.org
They are a fantastic resource.
Being cheerful & positive is the best advice I can offer you.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, July 01, 2008 at 20:59:12 (GMT)
My name is June Valentine.
My daughter Hidy, her husband Mike and his parents were in a 2 car accident on Father Day June 15th, 2008 when a pick up truck pulled out in front of them. Mikes father was killed his mother is ok and Mike and Hidy are still in the hospital.
Mike had 2 broken legs (thigh bone) and multiple other injuries. He still doesn't know much.
The reason I have contacted your group is that my daughter Hidy who is 41 lost her right leg above the knee. She is still in the hospital and has just beginning therapy. She does not have the Internet but we are trying to see if we can get it for her.
They are on Social Security so do not have any money.
Medicare is covering the expense for all of this for now.
I want to be supportive and do what I need to do, but this being my first time expericence with this type of situation and do not want to do anything to hinder her in any way.
I was wondering if you or any one from the group could give me advise as to what I need to do or NOT do to help her accept what has happened and recover.
Hidy has 5 childred and 2 grandchildren. She has 1 brother and 1 sister, and lots of neices and nephews.
Any advice you can give would be greatly appreciated.
My mailing address is: PO Box 125, Carney, OK 74832
Thank you!
June Valentine <gmajvalentine@att.net>
Carney, OK USA - Tuesday, July 01, 2008 at 20:47:42 (GMT)
Hi Dan,
I'm an RHD amputee, I lost my leg to necrotizing fasciitis (flesh eating virus) almost 3 years ago now. I recovered really quickly, adapted to getting around on crutches and went back to work 3 mos. later, even interviewing and taking on a new job during that time.
A few weeks ago I travelled to las vegas by myself to meet friends and on the way home I had a little problem with my crutches, with one breaking on me in the bathroom - leaving me to the mercy of a stranger to get to the gate, and on the flight crew to get me to my seat. (Um, United...two little old 4'10" asian ladies CANNOT carry a full size person in an aisle chair....you guys are begging for a law suit).
I hobbled/hopped on my one leg and single crutch rather than risk having them drop me.
As I was seated, I looked over and realized that the woman sitting across the aisle from me was a double above knee amputee. She was fantastic, very funny and personable. I didn't get a chance to get her name, but I think she mentioned she was a member of stumps 'R Us and was located out of Santa Rosa.
I found myself thinking about her repeatedly these past few weeks wishing I'd had a chance to chat more with her.
As I got on the plane I was feeling very self-conscious and at the mercy of others, and shaken up - not because I had been injured, but because it was the first time since my amputation that I was alone and "helpless". Just seeing her sitting there made me laugh - I mean, what are the odds?
Her humor immediately put me at ease and I felt better just seeing her there.
Thinking about her made me realize how valuable the humor and humanity this organization brings to so many many people are. Thank you, although I'm not much of a support group joiner, I have checked in here from time to time for stories and resources and it's all very much appreciated.
Best Regards,
Jennifer Gil <jennifer.gil@gmail.com>
Foster City, CA USA - Monday, June 30, 2008 at 12:32:29 (GMT)
PEGGY J.
You sound like one very remarkable young lady. Hang in there and have fun while you are at it. To me it is 99% of the battle when you can laugh and have fun being an amputee.
I am a bilaterial bka and I love to joke about them.
jack pickerd aka PEGLEG JACK <sparksjwp60@suddenlink.net>
JACKSONVILLE, Texas USA - Saturday, June 21, 2008 at 15:09:33 (GMT)
Valentín Secades in San Jose, Costa Rica...
Thank you!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, June 21, 2008 at 04:06:16 (GMT)
My name is Valentin.
I´m a developer from San José, Costa Rica, and was just reading stuff on your site.
I can say it is just amazing how little I looked for support groups throughout my first year as a AK left leg amputee. I was reading through some of the posts, and I just wanted to offer my help/services in whatever way I can.
I hope you have a good day, and keep up the good work.
Best regards
--
Eng. Valentín Secades M.
Lead Developer/Trainer
Quality XP Development
Software and database development/consulting 200 N Metalco Cond. El Rosal #1 San José, Costa Rica
Office USA: (503) 616-4399
Office CR: +506 235-5304
Cell: +506 398-3425
IM: Google Talk vsecades@gmail.com
Skype vsecades
http://www.qxdev.com
Valentin Secades <vsecades@indigitalcr.com vsecades@gmail.com>
San Jose, Costa Rica - Saturday, June 21, 2008 at 04:03:57 (GMT)
Peggy J. in Defiance, Ohio...
I wish everyone I knew had your attitude.
Wit, a sense of humor and the courage to look at life's disappointments as merely a bump in the long road to self sufficiency and strength of character will present you with a rewarding and happy life.
It has worked for me and I know it will work for you.
Thank you for sharing your positive story. You are a remarkably mature young woman Peggy J.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, June 20, 2008 at 16:50:54 (GMT)
I lost my leg when I was a thirteen month old child.
My mother had set a pot of boiling water on the counter unbeknownst that I was just tall enough to reach for it. Which of course being the curious child I was, I did indeed reached for the very pot of water that ended my right leg's life as I know it.
My leg was removed just below my knee joint, thus giving me the ability to wave it at my friends.
One of those friends being Ellen, who told me about stumps-r-us in the first place. She said she was bored and googled it.
I thought it sounded cool so I googled it myself and here I am.
I'm 17 now and the only time I ever vent about how much I hate not having a leg is when I am scribbling it all down in one of my many journal/sketchbooks. So, yeah I think that's everything and I guess I just wanted to be a part of this.
Thanks!
Julie Reith (AKA Peggy J.) <stub44@gmail.com>
Defiance, Ohio USA - Friday, June 20, 2008 at 16:41:53 (GMT)
Catherine in Switzerland...
You will soon be receiving E-mail from Double Above The Knee amputee members of Stumps 'R Us.
They are all doing well and have gotten on with their lives including boy friends and marriage in some cases.
Physical therapy and a Certified Prosthetist that fits you PRECISELY will open a new, successful path to a new life.
Please keep us informed as to your progress.
You are not alone!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, June 09, 2008 at 02:43:23 (GMT)
a few weeks ago i was in a bad car accident which left me a double above knee amputee. i just had the hopefully last surgery on my right stump and soon prothstetics will be fitted.
i live in switzerland and i have not found a single support group in my country so far. that's why i want to join your group.
i'm very scared concerning the prothstetics......scared of the pain, but even more scared of leaving the house and be confronted with the looks of the people outside.
i definitely need some support right now so that i can look at the whole thing with a lil bit of humour
sorry about my long rant/whine. what do i have to do to join your group?
thanks very much!
catherine <alesias.wings@yahoo.de>
Switzerland - Monday, June 09, 2008 at 02:36:12 (GMT)
Laura in San Jose
Please consider an ERTL Procedure. The details and the Orthopedic Surgeons qualified to perform the procedure is spelled out on page one of this web site.
Several Stumps 'R Us members have had the procedure with remarkable success. I will E-mail you the names tonight.
The only prosthetist I can recommend to you is Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics. He specializes in a perfectly fitting prosthetic device. He happens to be my Prosthetist as well.
Contact Wayne at:
San Francisco Prosthetics
324 Divisadero Street
San Francisco, CA
(415) 861-4146
I made the same decision you are contemplating 38 years ago. I never regretted the decision to amputate.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Saturday, May 31, 2008 at 02:46:56 (GMT)
I just spent some time on your wonderful website Stumps R Us. It was very encouraging.
I have survived 12 leg surgeries following being diagnosed with bone cancer in my right femur 19 years ago. The last one was done on an emergency basis to remove an artificial knee with a massive staph infection, two weeks ago.
I am contemplating resisting my surgeon's advice to have yet another reconstruction (which will inevitable lead to more surgeries later on) and instead have an amputation.
I live in San Jose,CA. Do you or any of your community have a recommendation for either a surgeon or a prosthetist in the south bay?
I would like to talk to some amputees, doctors, and prosthetists before making my decision.
Thanks so much for any information you can provide
Laura Ellingson <lellingson@scu.edu>
San Jose, CA USA - Saturday, May 31, 2008 at 02:37:26 (GMT)
I like the matter-of-fact, cheery tone of your site and hope that you or your members might be able to answer a very unusual query.
I'm helping a baby who was abandoned at birth in Vietnam and mauled by a wild animal, resulting in the loss of his genitals and right leg from the groin.
He's now 22 months old.
We are trying to secure funding but need a cost estimate. Any idea how much decent prosthetic care might run for an infant (per year), and how many limbs/fittings he'd require until grown?
For more details, please go to
http://help-thien-nhan.blogspot.com/
http://help-thien-nhan.blogspot.com/
Any ideas you have are appreciated!
Thanks
Mail: CTY SEA Design
675B Nguyen Kiem Street
Phu Nhuan District, HCM City, Vietnam
Tel: (84-8)412-0985; Mobile: 84-903423978
Elke Ray <elkeray@yahoo.com>
HCM City, Vietnam - Friday, May 30, 2008 at 12:31:28 (GMT)
An old friend had her legs amputated AK about 10 years ago. Today I saw some news about monkeys controlling prosthetic limbs with their brains. I got on the web and - although it is not directly related to the news - I found out about the Otto Bock C-legs.
My friend uses high-tech but not computer controlled prosthetics and walks with with one or two canes - although stairs etc give her great problems - for short distances, e.g., from the car to a store or to work.
Do you know of Double AK amputees who have had much luck with the C-legs? I'd like to do some research on this before I mention it to her.
Best
Robert Flood <rpfecon@gmail.com>
Washington, D.C. USA - Friday, May 30, 2008 at 02:27:05 (GMT)
Lorie Tatum...
Indeed you are correct...women & men are different amputee's. Yes we want our prosthetic limbs covered and to look good {BUT} also function properly.
Are you telling us no-one will be able to tell you are an amputee?
Who is making your cosmetic covers?
I would love to know.
Thanks
Ann Gillian L/BK <lgillian@windstream.net>
Ohio USA - Thursday, May 29, 2008 at 20:28:20 (GMT)
Ron Webber in Savannah, GA...
The best of luck with the Coastal Amputee Network. It is a great name & a great idea.
I only wish more amputees would do what you did in jump starting another needed Amputee Support Group.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, May 28, 2008 at 14:30:24 (GMT)
WOW - did I just enjoy the last 2 hours or what -
Reading the Stumps R Us GUESTBOOK of course.
I have been an left AKA since April 2004, from an unusual running accident, but that is another story (everybody's got one).
I attended the ACA national convention in Atlanta last year and what a blast that was and I promised myself that I would come home and start a much needed Amputee Support Group in Savannah, GA (a far piece from U). So I finally decided 48 weeks later to get off my tail and do it.
Today it became official, the Coastal Amputee Network, was born, and in less than a day, I wrote press releases, contacted speakers (a Local PGA professional, with 2 leg amputations, who has been featured at Walter Reed Hospital), O & P support, DME folks and everyone is Happy and so am I.
I am paying for the first meeting place at a state college, just so everyone feels comfortable with the fact that there is no under the surface for this group and no one is sponsoring it.
All day I have wonder if I was crazy until I happened on your website. Dan you are the man in this crazy world and you are right, "It is just an inconvience."
God Bless you and pray that July 10th, 2008 is gonna be a Wild and Crazy time.
Ron Webber
5501 Woodland Drive
Savannah, Ga 31406
912-313-1711
Ron Webber <coastalamputeenetwork@comcast.net>
Savannah, Georgia USA - Wednesday, May 28, 2008 at 14:26:19 (GMT)
I drop by this site every 6 months or so. Today I read of several people with pain, though much greater pronounced, similar to mine. Usually I just have a mild electric tingling, which occasionally increases to feeling Im attached to a power transformer shooting into my stump through my head. If it continues for more than 3 hours, I'll take a pain pill.
I'm fortunate to have a high pain tolerance.
My prosthetic maker told me of another client with similar pain which prevented her from doing almost anything. She got a Botox shot and it stopped her pain. He said perhaps some people would need them more than once, but that she's walking now and doing fine.
Additionally, two other information bits. Due to the fact I got a job last year, my state vocational services paid for my latest foot so I could continue to be a productive member of society. It's a potential source for others who can't get health insurance. (My last quote was eight years ago, through the state, of $420/month, with a $3200 deductible. I decided to eat instead.)
Though I haven't seen him in eight years, my doctor was the best! Thomas Moore in Atlanta, who was head of Orthopedics at Emory University, and is now head at Grady Hospital. Though a severely underfunded public hospital, it has an amazing staff, and Dr. Moore saved my knee and my life. I heard in his residency he specialized in amputation, and it showed. When I developed a bone spur, he cleared his schedule to perform surgery the next morning. Great surgeon, and a good heart.
I'm bk (due to a car twisting off my foot against a lamp post eleven years ago - hey! I'm alive). I'm also part of that half of one percent who has muscle control.
I got a new prosthesis last week, which works by vacuum.
The liner is an Iceross Seal-In, ribbed with five rings to create the air seal when I push into the prothesis, air pushed out the valve. The prior three plus years, I had a pinlock. Does anyone else out there have this style? It feels very different, I suppose because the contact is lessened. At night, I initially also have red impressions on stump from the pressure, which of course fade out. I'm hoping with this leg to finally run again, and ride my bike more easily, without the wad of material behind my knee, but I'm hoping the tingling sensation I feel now is the same as before, and not circulation.
It's Memorial Day, so I'll be calling Kenny, my prosthesis maker, tomorrow, but I'd like to hear from other amputees.
(By the way, if anyone is near New Orleans, Bayou Prosthetics is wonderful.)
Thanks for a useful site.
Naomi
New Orleans, LA USA - Monday, May 26, 2008 at 20:14:27 (GMT)
Chris Cosgrove in Dogpatch, AR
A Stumps 'R Us Survival Kit is "In The Mail"
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, May 25, 2008 at 01:56:53 (GMT)
I love your web site and all the cool advice and info on it.
I was in a really violent accident last March where the p/u truck I was driving was t-boned on the passenger side at high speed resulting in my left arm being sliced off above the elbow by the seatbelt that's supposed to protect you during things like that.
My postal address is:
HC 73 Box 12A Dogpatch, AR 72648
Chris Cosgrove <lovetheblues501@hotmail.com>
Dogpatch, Arkansas USA - Sunday, May 25, 2008 at 01:54:18 (GMT)
Request for references for surgeons with a high level of experience with stump revisions and will take the advice of a prosthetist prior to surgery
I have been a LBKA for the last 31 years. I have been very fortunate to have had a minimum of problems over the years and was lucky enough to find Jim McKean, CP, here in Austin back in the early 90’s.
In 06 it was discovered that I had developed a very large bone spur over the last 30 years and it was pressing on nerves in my stump causing it to go numb. I decided that I had to have it removed and figured that I would have the surgery, heal, get refitted with a new leg and continue on as before.
Well it hasn’t worked out quite like that.
I have really had a hard time getting back to where I use to be and it sure isn’t for the lack of trying of Jim and the other folks at Hanger. My surgeon really wanted to be minimally invasive and removed the spur and left the other side of the stump as it was. I now seem to be getting really loose skin on the non surgery side and it wants to fold over creating painful creases by the end of the day. I have the uneasy feeling that the only solution to this will ultimately be surgery.
I had to take off over two months from work last year to heal from the spur removal surgery so I don’t want to do anything immediately. Right now I just want to gather some information. I would like to ask anyone out there if they know of a surgeon that has a good reputation for specifically performing stump revisions.
I live in Austin, TX, so I have could easily travel to San Antonio, Dallas, Houston, or Oklahoma City if necessary.
This would be a last resort but I am very motivated to get back to the level of activity and comfort that I have had over the last 30 years. Thanks in advance for any advice or opinions you may have.
John Hamilton <john.hamilton@roche.com>
Austin , TX USA - Tuesday, May 20, 2008 at 14:50:04 (GMT)
Hey Len,
This is directed to your wife :)
Hey Girl,
Let me tell you as a bilateral BKA......you do NOT let anyone hold you down or back as an amputee. My greatest fear as a bilateral was learning to balance and what I would not be able to do afterwards, and let my say this.....I ride motorcyles, I wear high heels {not perhaps as high as I used to wear them, but I STILL wear them.
This spawned many heated discussions with my Orthopaedist and Prosthetician who continue to argue that prostehesis are for "functionality" and not for "fashion" and my counter to them is why can't you have both??? So today, I have many sets of "legs" with different heels settings....
1} tennis shoes,
2} Flat sandals,
3} 1 1/2 inch heels.
Soooo, I won, prothesis can be for functional and for fashion. It just took a Computer Engineer Female to show them how to make it work!!! I wear dresses and skirts and to this day NO ONE can tell.
There is a difference between men and women amputee's.
Men don't care wearing and showing the world their prosthesis and women want no one to notice their prosthesis. We paint our toes, we wear sandals, and the cool thing about it is, no one can even tell.
Little changed after my surgery. Although, I had to change my single's ad after my surgery to say....."Men with foot fetish's NEED NOT APPLY :)
I lost several toes, then came the complete amputation. All I can tell you is to be patient and allow yourself to heal completely! Baby your incisions and take care of your skin.
After my surgery, I asked the surgeon when I would walk again without assistance and he told my 1 year. I look at him and said, "THAT IS NOT ACCEPTABLE"! 2 months from the day of my surgery I was up walking without assistance.
The other factor to help me was my Prosthetician....I went to his office and the first thing he asked me was, "What did you do before your amputation?"
I told him and then he told me that EVERYTHING I did before, I would do again!! Well that's not true, I couldn't walk on ice after my surgery, but I didn't care, because I couldn't do it before my surgery.
Lorie Tatum <lorietatum1963@insightbb.com>
Foster City, CA USA - Friday, May 16, 2008 at 03:48:09 (GMT)
Hello,
I have received a request for an amputee support group in Spanish. Do you know of any in this area?
Thank you!
Mary L. Garcia <garciam9@sutterhealth.org>
San Leandro, CA USA - Wednesday, May 14, 2008 at 17:20:04 (GMT)
I am a BK amputee, and would like to know if there is a web page or blog which compares all the different feet like Springlite, Freedom, Flexfoot etc. that are available.
Your information would be greatly appreciated.
Jose H. Suarez <jhsuareze@gmail.com>
USA - Tuesday, May 13, 2008 at 17:48:05 (GMT)
Giancarlo in Tumwater
There are support groups listed on the Amputee Coalition of America website, amputee-coalition.org. There is one in Lacey called the "South Sound Amputee Support Group", but it does not have contact information, so check the phone book. There are others also in the general area, from Hoquiam to Seattle/Bellevue.
There is also an outdoor group based in the Seattle area, Outdoors For All Foundation, at: 2 Nickerson Street, Suite 101, Seattle, 98109-1652. 206-838-6035. Their website is at outdoorsforall.org.
I too am an AK living in the NW (Longview). I also started as a BK, but because of infection from the original surgery, moved up (so to speak) to AK while still in the hospital.
Good luck!
Richard Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Monday, May 12, 2008 at 20:54:09 (GMT)
Steve...
Hell on Earth is the only description I could come up with to describe your pain problems...that & the incompetence of the ER people you encounter.
The only solution I can offer is what saved my life. Self Hypnosis. It only works if you are highly motivated to make it work. Obviously you would be highly motivated.
You have one of two courses to follow to begin this new journey.
1) Contact Medical Hypnotist Seth Deborah Roth at sethdeborah@hypnotherapyforhealth.com right away. I know her work and would recommend her without equivocation. She lives and works in the San Francisco Bay Area.
2) Buy Self Hypnosis DVD, CD or Cassette tapes to teach yourself the process. That is what I did 20 years ago before meeting Seth Deborah. You can find the DVD, CD or Cassette recordings through GOOGLE.
If it were me I would contact Seth Deborah right away.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, May 11, 2008 at 15:57:28 (GMT)
Hey, Dan.
I've been reading up on the procedure that deadens the nerve endings during the surgery to remove said limb. One guy says his pain dropped to about 1% of the the amount of pain he had been experiencing. Honestly, about the only thing that I can't seem to master is the intermittent spasms that shoot up and down my legs (mostly down the legs, and mostly my right hand side, the side most affected by my spinal cord injury.)
Because I had lots of foot surgery prior to my amputation, when I'm having the spasms, I feel the old areas that were injured. My right foot had most of the flesh ripped from the top side, from the ankle to the toes, and when those stupid spasms hit, they tend to "relive" the injury, by flashing through my body with violent abruptness. It's a funny predicament because I had these same spasms before my leg was amputated. But after 18 years, I can't figure out why I still have such severe attacks.
After 60+ surgeries, you can obviously understand that most oral medication doesn't do much for me anymore. (I have a formula for prescriptions: triple the dosage.---But I don't want to burn out my liver, either.) For years I have avoided any medication and I just "put up" with my spasms as they only occurred a handful of times each year.
In the past 3 years, the winters have been excruciating for me as the cloudy weather can trigger my spasms to start, and then I'm screwed for the next 8 to 24 hours. I can't handle that every week!! I've been doing this crap for a long time, and when it gets unbearable, I go to the ER for an injection. But that's a major hassle and at certain times, I'll get some jerk doctor who thinks I'm there just to get loaded, and I'll only get a prescription for some oral meds. Talk about a waste of time and energy! When it comes to effective pain relief, I need an injection or nothing else even comes close. The real shocker is that I'm going to the same hospital I went to when I had my wreck....I shouldn't have to put up with the imcompetency.
I only want to sleep once I've been "getting zapped" constantly and I'm worn out from being tensed up and having my legs thrash about for the past 15 hours or so.
Other than that, I think I'm good. How are you? I'm really trying to finish my book. I just wish the setbacks could be better managed. I don't want to do any epidurals; I had a friend that died during one of those. (That's really not it; my bones are so mangled in the lumbar region that they couldn't even get the needle to penetrate the proper area when I tried one years ago, and I 'd rather like to avoid that unpleasant experience if I could.) Besides, doing repeated epidurals is no way to manage that kind of problem.
Is there any new way to limit my nerve activity? Sometimes my toes feel like they're being hit with a hammer, and then it goes away for a few seconds and returns. Sometimes the pain stays in my thigh instead of shooting all the way down. It's bizarre and it depletes my energy level. Years ago, that was one thing I did look forward to. I figured that after the ampuation, I wouldn't have those damn shooting pains anymore. I was wrong about that. They are very active today. I recently had an MRI that confirmed that I've got 2 bulging discs and 1 herniated disc, nothing new there. But I don't believe that I've got a bone spur rubbing in the wrong spot, etc.
I just have these intense flare-ups that make me pull my hair out. The bad thing is that my hair is pretty thin these days.
Hanging In by Hanging Out
Steve Bogna <thegreat1@socal.rr.com>
Newhall, CA USA - Sunday, May 11, 2008 at 15:54:19 (GMT)
Well....where do I start? You have some varied questions, and I will try to reply with some history of my own, and a little "how I see it" thrown in as well. This may get long, but please bear with me.....and hopefully what I share can help.
Some of my history is on the "Stumps R Us" site but I will reiterate some of the details to make sure you have a better perspective of where I am coming from.
My amputation occurred in September of 1980, when I was 30 yrs old (left foot). The surgeon at that time had a choice to make on my leg due to what was left.....the farm equipment took off the lower part of my foot including toes with portions of the metatarsal bones remaining. This surgeon at the time had read about a modified Symes where the tendons in the shin area of the leg is attached to the pad of the stump to prevent the backward pulling on the pad and stress to the front part of the stump pad. Kind of a "fore and aft" motion on my stump pad was created---I could actually wiggle the end of my stump as I tried to lift and drop my foot that wasn't there any more. The doctor at the time said he could have done a BK (transtibial amputation) but felt I would have more durability and leverage walking with a Symes (a longer residual limb has more to work with and more surface in the prosthesis for weight bearing).
The actual amputation happened in late September, and I didn't get into a prosthesis until February of the following year. That one lasted until my leg shrank down to get into one in September of 1981....just about a year after the accident.....so it took about a year for my leg to atrophy to a "mature stump" shape. That prosthesis lasted until 1998 (it took a year in 1998-99 to get used to that new prosthesis) when I started running for added exercise, and my stump lost more volume to the point I needed to get into a new socket.
Now some comments on the pain level......the initial accident was ugly....with limited technology at the time to manage pain....the strongest stuff I got was demerol. I had phantom pain from the get go, and continued to be very tender throughout the years. The doctor told me one of the benefits of a Symes was that it was long enough that if I had to get up in the middle of the night to go to the bathroom or whatever, that I could just hobble on the end of my stump......Ha-Ha.....I could never put more than about 10% of my body weight on the end of my bare stump. The area in the front of the stump pad where the tendons in the front of the leg were attached continued to be very sensitive, and never did toughen up with the years. Cold temps made it extremely sensitive, and doubled the phantom pain activity.
Since I tried to continue to farm for the next few years after the accident (I had lots of livestock as well) I had to be on it in all kinds of weather outside. The first year in the two prosthetics were very tough, because the stump was continually changing, and was always rubbing blisters. Every visit to the prosthetist created a need to visit another time or two just to get the socket to fit better. The more I was on it in the first few months, and that year, the more phantom pain I had, and the more pain overall I experienced....but at
30-31 years of age.....I just tried to put up with it. And over the years as I tolerated the prosthesis and the pain....and got out of farming......then and now into sales.....I am not forced to be quite as active and can manage the physical demands.
Now to be sure we are talking "apples to apples" by what I understand as a Symes amputation, and what I had was where the tibia and fibula (lower leg bones) are intact and the stump pad is the part of your heel tissue that the Achilles tendon is attached into. The process is named after the doctor that originated the amputation in the 1840's in England.....a son-in-law of another famous British doctor. (sorry, not to be too anal, but wanted to be sure we are on the same page)
Now on to the near past....about three years ago....in April of 2005 my stump became VERY tender....to the point I could not walk on it without terrible pain. As a few weeks went by a blister on the end of my stump developed and peeled off, and a large crack in the stump pad remained.
I visited a doctor in the practice I had originally gone to with the accident, only a much younger doctor since my original surgeon had retired long before. X-rays proved to show that I had calcium deposits in the end of my stump...in the soft tissue of my stump pad. Those calcium deposits along with the cracked skin caused the pain. I felt that if I could get the skin to heal back up, that the pain would subside. (People with intact feet have heel skin cracks that come and go, and I thought that I could get my pad to heal.) By October of that year (2005) the skin had healed quite well, and I thought I was on to beating the problem, but with cold weather setting in, the skin cracked open again (by Feb 2006) and I was back in terrible pain with the open sore and awful phantom pain......someone always wanting to drive a knife into by big toe that wasn't there, along with lots of other sensations.
So I went back to my doctor I was visiting, and he suggested doing a BK revision. I was running away (in my mind) from that choice, because the first amputation was so painful I vowed to not live through another amputation. From that Feb-Apr-June time frame I was fighting to get that stump pad to heal back up, with little success and LOTS of pain....I was physically going downhill. By some act of fortune and divine guidance I came upon the Stumps R Us website, and Dan Sorkin emailed back to me about the Ertl Reconstruction website.
I pursued William Ertl at OKC Med Center and had surgery in July 2006 to reconstruct the stump into a BK....the very thing I feared.....and am doing very well with the resulting stump. I have about 1% of the phantom pain had experienced before, and get around very well with the prosthesis I have now. Mobility and balance are as good as what I had with the Symes.....but it does take more energy and effort to get around.......one burns about 130% of the calories as a BK amputee compared to an individual that is intact.
So the original Symes did serve me fairly well for about 26 years, but did outlive its usefulness according to some friends with medical background. My need to go to another reconstruction surgery was necessary just due to the normal "life" of the Symes amputation.
The other piece of the whole equation is to go to a reputable prosthetist that listens to your needs and is willing to keep working with you to get the prosthesis to fit you. If the person isn't willing to hear you out, find one that will. The prosthetist is as important (or maybe more so) as the doctor in this whole thing!
Now, with all of that said......can I say go out and get an Ertl? Well there are a lot of people that sing the praises of it......including me.....but you have to be the one that decides it yourself......and if you do......go to one of the Ertl doctors that get it right the first time.....don't go to a doctor that does a modified version.....you can read on Dan Sorkin's website of the many folk that have tried that and came out needing more modification. Get it done by an expert the first time.
That is enough rambling from me for now. Hopefully I have answered some of your questions. If you would like to talk in person, and you have a phone I can call you on.....I have nation wide calling on my office and cell phone.....send me your number and I will call you.....at a time that works for you.
Here's hoping all of this noise has helped a little bit, and let me know if I can help in any way.
God Bless.
Dave Paschold
402-423-0308 office
402-239-6947 cellular
Dave Paschold <dlpaschold@landolakes.com>
Lincoln, NE USA - Thursday, May 08, 2008 at 02:59:14 (GMT)
My 11 year old grand daughter, a below knee amputee, is going to camp for the first time. The type of prosthesis she is now using does not stay on while swimming.
I wonder if anyone has had any experience with the dry pro prosthesis protector?
Is it durable?
Does it keep the prosthesis on? etc.
Thanks
Libby Appley <raylibby@mvtel.net>
Mountain View, Arkansas USA - Thursday, May 08, 2008 at 01:09:40 (GMT)
I have been a symes amputee for about 2 years due to a motorcycle accident when I was 16 that left my left foot mangled. I am now 56 and am having trouble getting a prosthesis that I can wear more than a couple of hours.
I have noticed by reading from your web site Stumps R us that a lot of symes amputees seem to eventually opt for a higher amputation.
Did I make a mistake?
I was told how great it was going to be and I would be able to do anything I want but am not getting to that stage. Seems to be getting worse.
Can you get me in touch with someone who has gone this route and tell me the reasons for opting for another procedure.
Thank you!
Charley Whisner <charleywhisner@comcast.net>
USA - Thursday, May 08, 2008 at 00:57:24 (GMT)
Can you send me some group addresses in Ventura, Santa Barbara or West Valley (calabasas, etc.) since I live close to these areas?
Thanks
George Musser <gmusser@socal.rr.com>
Southern, California USA - Wednesday, May 07, 2008 at 18:36:49 (GMT)
My right leg was amputated in 2004. First BKA, in June, as a result of a kayaking accident ... then AKA, in August, as a result of infection that the VA missed.
I have tried to behave as if my limitation is more of an inconvenience, rather than a disability. I play basketball in a league while in New York, and was quite active. Since I moved out to Pacific NW, things have changed. A lot less transportation. A lot of cordiality, but very little intimacy.
I have kayaked the south Pugent Sound, and that was okay, but lonely. I have also tried to snow ski, and that turned out to be a disaster. I have a prosthetic, but my walking is limited because of painful infections in my LEFT foot, and my resisdual leg can not take more than 1/2 hour on treadmill.
I am going to start aquatic therapy next week, so maybe I can get involved with water sports.
I live in Tumwater WA, a small hamlet outside of Olympia/Lacey. I have been out here since June of 2006, and have only crossed paths with ONE other guy in a manual WC. I am confused and lonely ... for the first time ever. I do not know how to process being alone.
The AA meetings seem different. There just is not much service that I can provide, and that was how I have gotten to meet people.
I am closing out my 24th year of abstinence.
I have tried traditional churches, but I just can not get into it. A friend in New York suggested that I check out 'Stumps-R-Us' as a source of PHYSICAL activities.
What to do .... now, please.
Giancarlo <Chuckfurer@aol.com>
Tumwater, Washington USA - Tuesday, May 06, 2008 at 23:13:39 (GMT)
2 questions:
Do you know of any consultants to give us some advise on remodeling a house for a double amputee?
Any list of contractors?
Thanks
JoAnn and Frank <moffittbusichio@yahoo.com>
Contra Costa County, CA USA - Tuesday, May 06, 2008 at 02:42:37 (GMT)
Please review this: It might be of some worth
I've been reviewing alot of the postings, and I am amazed to see how many people have trouble getting a good fit for their legs! (I'm sure this is less of an issue for arm patients, as you are NOT bearing weight on it, etc.)
DUDE! I know you already know this but the proper fit is the essential key element in achieving a painless product!! It's the fit above all that determines if the patient will be a happy person---I know this to be true.
I thought my unique situation created what I thought was a rare problem in obtaining a good fit. I have to rotate my pelvis in order to walk, due to my limited range of extension in my legs. So, this twisting motion has to be taken into account so I don't run into a problem with friction, etc. I'm sure there are guys out there that have a BKA but they walk so well that you cannot even notice! Let me tell you, I'm not one of those guys. My gait is probably the worst possible gait that would allow a person to still get around. With an artificial limb, you can imagine the extra complexities. Enough boring details! What I am getting at is this:
for people in Southern California, (I guess I should say Los Angeles Area)
Jeff Vranesh of Reseda Prosthetics is very skilled, and the 2 of us have figured out a bunch of my problems. I've had at least 5 legs made by Jeff. I've done the split-toe (No, not camel-toe...) Flex foot, (with the air-bladder for adjusting the stiffness-a waste of time...) and others. I switched back from the ratching pin system because, although it allowed for better flexing of the knee because the rear of the socket can be cut really low, (Something I requested to allow me better range of motion, mostly for rock-climbing) I didn't like the fact that I would always manage to accidently bump the release button at an inconvenient time. That in itself wasn't really the problem: The fact that I knew it could happen really bugged the s*** out of me, so it was sort of "on my mind" all the time. It's bad enough being a gimpster; nobody wants to worry about parts coming off, too. I tried it for a few months, and never got over that nagging feeling, so I told Jeff we needed to go back to the suction/liner style. Jeff hates the fact that I burn through the sleeves pretty often, but it is what works for me. I have Medicare part "A" & "B", and I have never paid Jeff a penny for any of his services. He personally delivered to me on one occasion a sleeve when I couldn't get over to his office. I get about 2 sleeves a month from him. Sure, I could use more, but the price is right, so I try to get my sleeves to last as long as possible.
The guy is dedicated, he doesn't drive a big fancy car, and he cares about his finished product. Of course, he can't build your leg for free, but if he could, he would. I think he takes most any type of insurance that has the proper coverage--a rare thing today!!!! I'm so glad my wreck happened back in the day when you didn't even know how much your medical bill was, provided that you were covered--The insurance company just paid the bills.
Another point to consider: The sleeve system just feels a bit more snug when it's working right, and to me, when the leg fits well, I tend to not notice that my leg stops just below the knee. When my leg fits perfect and I walk and walk and walk, I feel like I'm tired all over--in both feet, if you know what I mean. If the leg has piston action, you deal with it, but it definitely lacks in the comfort zone. With piston action, you get "reminded" of where the leg ends with every step since you feel the rubbing action. It's just a few details but they are critical factors in getting the prosthetic to be a tool, not an impairment. You wouldn't go to work barefoot, would you? (Only if you were a surfing instructor...) The leg is like a shoe, it's something you need. Actually, my leg is great for playing tricks on people. I wouldn't have that attitude if the leg bothered me, so it's ultra important to work out all the bumps.
The pin system doesn't really suffer from piston action, but to me, the top of the leg feels too loose. And that, combined with my uneasy feeling that the release button would let go, this prevented me from liking that configuration enough to stay with it.
Anyone who needs some help can call his office (818) 993-5441
Jeff Vranesh Reseda-Prosthetics 18441 Bryant Street Northridge, CA 91325
www.resedapro@aol.com
I'm sure if you can get to his office, he'll do the rest!
Enjoy what you can.
Steve Bogna <thegreat1@socal.rr.com>
Northridge, CA USA - Tuesday, April 29, 2008 at 22:14:06 (GMT)
My girl friend in her late 50s, had an LKD amputation in ’05. She is fit, in excellent health and was very active physically prior to the event.
Although her prosthesis seems satisfactory, she walks very slowly and usually with assistance from a companion on one side and a cane on the other. Being aware of the risks of injury particularly to her hip, she has a great fear of falling. She feels the need to consciously maintain active mental control over her walking process.
We have discussed her exercising perhaps for an hour every day using a fitness treadmill with side handrails for the purpose of improving and developing greater confidence in her gait.
Is this a reasonable way to address her situation? Are there treadmill recommendations for this purpose?
What are some alternative solutions to dealing with her fears and gait?
All suggestions and recommendations are appreciated.
William Alfred <walfred@gmail.com>
Pittsburg, CA USA - Thursday, April 24, 2008 at 20:34:41 (GMT)
I hit a car head-on with my motorcycle resulting in an impact force of over 110MPH. I had 44 broken bones, spinal cord damage, and massive internal injuries, but I was also 16 at the time.
I had a ruptured spleen, collapsed Right lung, torn stomach wall, ruptured bladder, I lost 18 units of blood from a severed femoral artery.
I have had 64 surgeries, the last one in 1990 when I chose to amputate my right leg to “get on with life” since I was convinced I could not salvage my foot to my satisfaction.
Since my pelvis was fractured in 10 places, I had an incomplete spinal cord injury, mostly affecting my right side. They said I’d never walk and I’d be in the hospital 2 years. I proved them wrong on both counts. I was done with them in 99 days (and 41 surgeries) and I went back to school the very next day.
I rock climb, ride motorcycles, and anything else that I feel like doing. I now have a set of twin boys, age 10. I’m now 46, and I can help others get through their own traumatic ordeals. I am writing an autobiography specifically to address how people let barriers hinder their progress in life. I refuse to do that-ever.
I am also in the process of developing a portable, heated garment that people can wear to keep their stumps warm when they are not wearing their prosthetic device. Battery powered, with 5 heat settings, etc. It works well for me and I think it might help others, too. If you are interested in knowing more about it, please feel free to contact me.
Thanks
Steve Bogna <steve@cbdcabinets.com>
USA - Wednesday, April 23, 2008 at 23:55:17 (GMT)
Pin vs Suction
We are all different, but I for one find the pin system to be very uncomfortable. It milks my stump during the day to where the stump is elongated and distorted. The pain level commences at this point and gets quite aggrevating unless I reassemble 1-2 times during the day.
I switched back to a suction socket which happens to also be a vacuum socket. It is by far the most comfortable system I've used to date.
The pin is easier to donn and doff, but more uncomfortable during the course of the day. It's also a pain in the *** to have to undress and reassemble during a busy day at work.
Neal Seigfried <neal9935@hotmail.com>
Bixby, Oklahoma USA - Tuesday, April 22, 2008 at 00:05:23 (GMT)
I'm a partial-foot amputee and need help and some suggestions.
I need something that can be made by my prosthetist that I can wear in place of the part of the my foot that is missing. I need something that isn't bulky and can be worn with a regular shoe.
That is the objective.
My prosthetist has made 2 things for me and they just didn't seem to work. Any ideas, websites, or products that you know of or may have used, companies or prosthetist that you may know of in my area. Please feel free to contact me. I need to know that the product is going be comfortable to me and something I don't have to worry about coming off period. That's my fear!
Thank you!
Michael Reed <mreed1123@yahoo.com>
Atlanta, Georgia USA - Monday, April 21, 2008 at 02:46:09 (GMT)
I was going to UCSF for prosthetic care. My husband got sick and he had to have open heart surgery so we couldn't get back to UCSF.
We went locally to Hanger. Found out from Hangar that my knee, which is a C-leg from Otto Boch is a donated leg from someone who passed away from cancer.
I have had the same socket since I lost my leg last July.
So when we went to Hanger, we thought they would make me a new socket.
WRONG!!!!!
They said a C-leg can only belong to one person!
SUPRISE!!!!!!! They will not touch my leg or give me a new socket, because of liability.
After much research, found out this leg was registered in 2003 and has never been serviced.
My husband and I do not know what to do. We contacted John Crane from Otto Boch and he said someone should still be able to give me a new socket. But we can't find anyone.
Hangar wants me to purchase a new microprosser knee, pay 8,000 for a copay. We don't have one penny for that. Then they will give me a new socket.
I have a Kiss-Lock for a socket which UCSF started me off with. It is heavy, can't get any clothes over it.
Meg Wolff had me E_mail you a long time ago. She said she has the best leg she has ever had.
Any Advice?????????????????? I just want to walk.
Thanks
Arlene Peterson <Pflagship@aol.com >
Ripon, USA - Tuesday, April 15, 2008 at 16:06:03 (GMT)
John Loring...
I have never used a pin and locking system, but I have had no tibial pain with the suction socket I've been using since 1982 (LBKA also).
I had considered changing to the pin locking system, and my prosthetist advised me not too - he said a lot of people complain about the constant "pulling" feeling
on the end of the stump. I'm sure you know what that feels like.
This feeling does not occur with suction/sleeve style of prosthetics, at least for me, although I have never heard that complaint from a suction wearer.
I wish you well with whatever your choice is!
James Prial <james.prial@gmail.com>
San Francisco, CA USA - Monday, April 14, 2008 at 13:39:57 (GMT)
Hi fellow amputees!
To Karen in BC Canada who wants stumpy stuff like t-shirts, mugs, etc.: There is a site called Cafepress that has all sorts of cool things for us stumpers! It is at
http://www.cafepress.com/buy/amputee/-/pg_2
For Len in Foster City, CA: There are numerous relief methods for phantom pain buddy. But you might want to start at
http://www.amputee-online.com/amputee/phantom.html
and also check out the reference links here on Stumps.org.
I’ve heard several times from those in the know that if one method doesn’t seem to be helping, then by all means continue to try other things. And I’m sure I speak for others on the forum who wish the best for you and your wife, and her operation this week.
For me: I’m nervous about my upcoming purchase of my definitive leg prosthetic (I’m a LBKA since last year this week due to an infection that set in after foot surgery).
Has anyone ever used a pin and locking prosthetic and gone on to use a suction suspension system? Or vise versa? I have a great deal of pain in the terminal tibia area of my stump and would like to know which system is more comfortable over the other. I’m currently using a pin locking socket.
Thanks!
John Loring <johnloring@comcast.net>
San Rafael, CA USA - Monday, April 14, 2008 at 12:09:18 (GMT)
I have been an active CFII (Certified Instrument Flight Instructor) for more than 25 years.
I am a LBK and have been since 1968.
I have no problems with rudder control or "feel" for the prosthetic placement. In time it becomes natural.
In order to properly make positive contact with the brakes (located in the tops of the rudder pedals) I switch to a Peg Leg.
The Peg allows greater flexability and more accurate placement to activate either the rudders OR the brakes.
In order to earn my SODA (Statement Of Demonstrated Ability) to the FAA FSDO I was given a flight check using the Peg Leg.
Piece of cake!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 27, 2008 at 02:12:17 (GMT)
My name is Bill, BKA since 2000 had childhood cancer at age of 14. Lost leg due to radiation tissue
damage. Had revision in 2006 because of osteomyelitis. Had the dream of wanting to fly for years,
took my introductory flight a few weeks ago. Had a great flight was very excited about learning to
fly but, I had a hard time feeling the rudder petal with my prosthetic.
Will this improve with training?
Is their some advise you could give me?
Just found your site I think its a great thing for us amp's
to help each other.
Sincerely!
William Grill <stumpybill@hotmail.com>
Reddington Shores, Florida USA - Thursday, March 27, 2008 at 02:01:55 (GMT)
Dear Longview, Washington
Group Posting would not increase the value of the information or its dissemination.
Thank you for the suggestion...keep thinking!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 26, 2008 at 00:01:02 (GMT)
Dear Dan
I came across your site while I was looking for info regarding muscle shrinkage for my bka on the left-I have had since 2004.
Thanks so much for this site. it is very interesting and helpful.
Can you group post by state/country?
RICHARD ZEE SELZLER <richzee2@msn.com>
Longview, WA USA - Tuesday, March 25, 2008 at 23:56:49 (GMT)
Back in 2004 my husband became a DBKA or as he now calls it "cripple with attitude" seeing the world likes to put label on people.
Back in 2004 I found a website that sold cool stuff like I'm with stumpy t-shirts, mugs, & licence plates.
At the time my husband did not find them so funny and would not let me buy them.
Well four years later I have decided it is time to have some more fun and buy some stuff but now I cannot find the website.
If anybody knows of a website where I can purchase such stuff please tell me.
Thanks in advance
Karen Seddon <karenseddon750@msn.com>
Kelowna, British Columbia Canada - Monday, March 24, 2008 at 01:36:46 (GMT)
Don In Tara Ontario, Canada
About your situation and the setbacks...it happens. I am an Instrument Flight Instructor. Several years ago I was scheduled to pick up our new corporate aircraft in Georgetown, Texas and fly it back to California.
At the time I was Company Chief Pilot
A week before the pickup I fell and badly injured my stump...so badly the doc said I might never fly again.
I limped out of his office on crutches, bought a book on self hypnosis and proceeded to cure myself in time for the pickup in Texas.
Self hypnosis worked for me! It might for you as well.
About your suicidal chum. Either he will or he won't. His fate is in his hands...nobody else's.
Happy Easter!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, March 23, 2008 at 20:35:01 (GMT)
It's been a while since I contributed to the support group.
It's been a very long, hard winter up here in rural Mid Western Ontario. It's been a little over a year since I had the surgery (Left below knee amputation).. Everything was going well. My spirits were up and I was doing all that I was told to and then I took a bad fall on some ice outside of our local Habitat for Humanity.
I was in there buying some steel towel bars and various items I needed to make my life a little easier.
My knee didn't hurt at the time, but a few weeks later I started to have a significant amount of pain and the surgeon brushed it off as normal pain from over using my good leg.
Well, here I am several months and one MRI later and I get told that I have to have some surgery to my good knee and to be prepared for another bout of physical therapy for a few months.
I've already lost a year's business from my greenhouse and I've already spent money to get ready for this season, but it looks like I am going to be crawling.
I hope you guys don't mind if I unload some stuff I have on my mind. I feel like such a failure!
How is that you see so many people in the magazines and brochures that are running and skiing.. People that have lost both legs and here I am with one little amputation and I can't get it together.
I have a chum that I was in rehab with who emailed me this week to say that he is likely to have to have his other leg amputated and that they had taken his prosthesis away from to ensure that he wouldn't walk. He told me something that has haunted me ever since, he told me that he was seriously considering taking his life. I've not had a response to any of my emails from him and I do not have a phone number or address for him and I am thinking I should telephone the rehab clinic we both attended to see if they could help him, but another part of me tells me to mind my own business.
I have to be honest with you all and tell you I know exactly how this guy feels. We shared a room together for the better part of twelve weeks and shared a lot of personal stuff. Neither of us had many visitors as we both came from northern rural communities.
I don't know what it is like in the United States, but here in Canada we have a program that helps you with basic shelter and general needs, but I can tell you that they make you feel like the lowest of the lowest if you have to apply for government assistance and unless you are able to afford the best prosthetic equipment and medical support you best be prepared to work like you've never worked before at being able to take care of yourself.
I apologize to you all for being such a downer and I think I am going to have to have a little chat with my Doc to let her know how I'm feeling and maybe she'll give me the kick in the rear I need to get out of this funk....
Well, everyone thanks for letting my share. I promise you I am not the type of guy who would consider topping myself, but I am concerned with my chum. I do think I will call the rehab unit and talk with the Doc that was in charge. She will know what to do. I just hope I don't cause my buddy any more trouble then he already has??
Cheers to all and thnx
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, March 23, 2008 at 20:19:40 (GMT)
Greetings.....
My name is Charlie McGowan
I have been a (LBKA) since 2/05/ from diabetes. I'm 53 yeqrs old, and otherwise in good health, but back
in Dec 07, I slipped on some ice and broke my (right) ankle, wich turned into a mess in a couple of months.
Three surgeons tried very hard to save my foot/leg, but it just wasn't in the cards.
I have now lost my right leg (RBKA).
On 2/08, about a month and half out now I will be getting a cast for my right prosthesis on the 25th.
I walked very well with no aids for two years on my
(LBKA). One could hardley tell I wore a prothesis. At this point I'm very curious about how much different it's going to be walking on two fake legs.
Other bilateral amps have told me (NO PROBLEM) just be determined. I'm normaly very active so this is important to me.
I would appreciate any advice or input from my fellow amputees out there.
Thank you...
Charlie McGowan <irish_sky54@yahoo.com>
USA - Friday, March 21, 2008 at 13:36:02 (GMT)
Id like to post a question on the website.
Im bi-lateral amputee, left above knee and right below knee.
Ive got a dislocated hip following the original accident and will need some kind of reconstructive surgery and hip prosthesis
I was told today that maybe Ill need some kind of traction before any attempt could be made to fit a hip prostheis as the femoral head is 7cm higher than the shattered acetabulum.
Anybody out there ever have this kind of treatment and maybe give me some information on whether it works and what is involved, how long in traction etc?
Thank you!
Paddy Lynch <pjkett@gmail.com>
USA - Wednesday, March 19, 2008 at 22:25:16 (GMT)
My wife is going to have all ten toes amputated next week due to a bacterial meningitis infection that caused gangrene. It will be done at a Kaiser Hospital. All her toes are black and dead.
Here are a few questions that some of your members might be able to share with me:
1) Prior to, or during surgery, is there anything that I can suggest to the surgeon that would eliminate or lessen any phantom pain?
2) Is there usually phantom pain with toes amputations.
3) How long is the average recovery time?
4) What about weight bearing?
5) Do any members have "toe prosthetics?" How good are they, are they worth it?
6) My wife always loved wearing sandels, is this still possible?
7) What about any lotions to help healing?
8) Any helpful suggestions?
Thanks!
Len Duggan <lenduggan@yahoo.com>
Foster City, CA USA - Wednesday, March 19, 2008 at 14:30:13 (GMT)
Hi Everybody,
I saw the posting below from Rick Morgan -- Longview, WA, regarding his decision to go with a suction socket from a liner/pin model.
I am anxious about this decision I have to make too. It’s time for me to get my first definitive leg, having had a BKA on my left leg last summer. I don’t have insurance that will cover a prosthetic so this is hard-earned money for me. A lot of it!
Right now, I am in considerable pain.
Of course the socket I currently have (liner/pin) doesn’t fit me anymore since my stump has shrunk etc. But could I get some feedback from others in this forum on how they faired with their new sockets when they went to definitive?
What is most comfortable? Easiest to get on? Least problematic?
Those kind of things.
My prosthetist has told me to research the various options. But I don’t know where to begin without talking to my fellow stumpers who have gone through this themselves.
Any help would be greatly appreciated!
Thanks!
John Loring <johnloring@comcast.net>
San Rafael, CA USA - Wednesday, March 19, 2008 at 02:50:10 (GMT)
Hi,
I just found you guys on the web. I'm starting to get a little anxious and have been looking on-line
for information.
I am having a right side AK one week from today. I have a great team here in Portland, Oregon, a surgeon that I know and trust, a prosthetist, a PT, and a trainer. My care and prosthetic choices are all researched and planed. That has kept me pretty busy.
Today the enormity of this situation hit me like a train and , well really, it has been going on for a few days, and now I would really like to hear from someone that has been through this because hearing it from the professionals is not the same as hearing it from the people who have already been down this road.
The injury that is the root of all this was in 1974. I was a structural steel worker and fell while erecting a steel building in Boston. There were 4 reconstructive surgeries then and a lot more throughout the years, so I am not new to major surgical procedures, but the loss of the entire limb, even a limb that has been nothing but trouble for the last 34 years, is something that I am starting to have a problem with fully accepting.
I don't know if I am being clear so I'll stop. But I would like to hear from some fellow (almost) amps.
All the best!
Peter Klauer <peter@touchstonepdx.com>
Portland, Oregon USA - Tuesday, March 18, 2008 at 12:45:10 (GMT)
Saw your note on STUMPS 'R US this afternoon.
I have been an amputee since 1980, as a Symes (off at the ankle) until July 06. I had reconstructive surgery then, and am now a BK---left leg.
Times can be tough, and the pain unbearable, but it will improve. At about 18 months since my last surgery, I am back to about as full of speed as I can be at 57 yrs of age!
Stay in touch with Dan Sorkin.....he helped me immensely through my tough times in June of 06 as I fought my "old stump" and before deciding to have recon surgery in July of 06.
There are scads of people willing to talk and support you......just reach out, like you already have.
Call if you want to talk more.
Dave Paschold
1220 North 80th St
Lincoln NE 68505-2088
402-423-0308 office
402-239-6947 cellular
Dave Paschold <DLPaschold@landolakes.com>
Lincoln, NE USA - Sunday, February 24, 2008 at 03:24:03 (GMT)
Hi,
I am writing this from my fiance's (he is 50 years old) hospital room, two days after he had his right leg amputated below the knee. I am desperate for all the resources I can get for him.
For now, his contact E-mail is mine...leah4109@aol.com, along with my mailing address:
Jack Menashe
999 SW 185th Ave
#4
Aloha OR 97006
Thank you kindly!
Pamela Raway <Leah41099@aol.com >
Aloha, Oregon USA - Saturday, February 16, 2008 at 22:54:51 (GMT)
The Amputee Treatment Center has completely rebuilt their web site and has really improved it. If you get a chance go into it and check it out, and please pass this on to others for me.
Thank you!
Here is the site;
http://amputee-center.com/forum/
Jack Pickerd <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Thursday, February 14, 2008 at 17:47:11 (GMT)
What an interesting site and I love the name.
My name is Bob(The Builder} and I live and work in Ky. My calendar age is 57 but I died four times the day I had my accident, so I started over.
I am four now.
Like Dan I also wrecked a perfectly good motorcycle four years ago. I lost my left arm above the elbow and suffered a brachialplexis injury to my shoulder leaving it with limited movement.
I knew right away that I was going to wear a prosthetic and I was going to make it work. I am now on my fourth arm and am trying to get another one. To say the least I am tough on them. I hope that this one is going to have some myoeletric functions.
I was invited to Vanderbilt University to see the ROCKET POWERED ARM in person. This is the technology that we all need to push development of new toys for us stumps. They are also working on a powered leg that actually will push off of the toe and knee. You can go from standing to a run instantly.
I hope that there are some other “uppies” out there that want to tell stories and stuff.
Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...'Wow! What a ride!' I refuse to tiptoe through life only to arrive safely at death. My bones will mend, my glory may fade, but chics dig guys with scars.
Thanks for the site.
Bob Tessier <bob@independentbuilders.net>
Cadiz, Kentucky USA - Tuesday, February 12, 2008 at 00:50:28 (GMT)
Greetings from Upstate NY - Actually , NY 125 miles north of NYC on the west side of the Hudson River.
I will be visiting Sacramento, San Francisco and Sonoma/Napa from the 14th through the 27th (one of my friends is in the area for training.) I'll be on my own during the day so I'll be looking for things to do.
I am a left BK amputee. I think I'd like to rent a scooter. Is anyone in the area to suggest a reasonably priced rental store. I've found good deals in Florida and Tucson but I've had friends to point me in the right direction.
I'll be getting in Thursday night and leaving for San Francisco noonish on Friday. A wheel chair would also work.
I don't think I can walk long distances and want to save my "on my feet time" for places where necessary. Thanks for any assistance.
Karen Schubert <kara3215@juno.com>
Coxsackie, New York USA - Sunday, February 10, 2008 at 23:42:05 (GMT)
A few months ago I wrote about Monistat chafing gel or powder to use in socket liners. Well my husband finally found another product that I had lost behind the bed. I had purchased it about 2 years ago. Now this one doesn't say anything about controling oder as the powder does.
So here is the address.
http://www.hudsontrail.com/viewItem/46/407/7061/
HTO Low Price: $ 7.99 (S&H)
The Anti-Friction Skin Formula is a unique all natural skin lubricant created to stand up to rubbing and moisture, prime causes of skin irritation. It helps stop skin trouble before it starts, and it helps avoid the need for first aid products. It is remarkably comfortable and reliably effective. It works in dry, hot, cold, humid, and even wet conditions - and it stands up to wind, fresh and salt water.
Prevents: Blisters, Chafing, Dry Skin, Saddle Sores, Cracked Skin, Rashes.
It contains Aloe and Vitamin E
All-Natural Ingredients
Hypoallergenic
I am glad he found it. I'm using this now instead as I'm not a good one-leg stander these days. I hope this will be of help to someone else that might need a change of product.
As soon as I get my right leg downsized then I'm to be fitted for a new right socket with a relief spot so that my bone doesn't bottom out.
I'm 69 and this last 8 months have been a bit on the rough side.
Everyone take care.
Janet Toomey <wjtoomey@sbcglobal.net>
Herington, Kansas USA - Thursday, January 31, 2008 at 19:51:21 (GMT)
Dear Fellow Stumps,
After 13 years in a wheelchair, I had my hips replaced. Considering you I like to think I had my amputations at the top of the legs instead of the bottom.
Since my surgery I've lost 120 lbs and hiked, biked, and swam. Seeing you guys at the Bowling Party Saturday January 26th, 2008 reinforced my belief that we can get it done.
My wife Lucy and I got home in an exciting one day drive on the BMW Motorcycle/Sidecar. Monday PM I rode 7.2 miles on the bicycle and Tuesday swam 1 mile freestyle.
I hope to be in even better shape when we see you all again next year.
Curt & Lucy Kovacs
"Nothing is too wonderful to be true..." Michael Faraday
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Flight to Arras, Antoine-Marie-Roger de Saint-Exupery
J. Curtis Kovacs, M.D. <docbabe4u@yahoo.com>
Sun City, Arizona USA - Thursday, January 31, 2008 at 03:41:24 (GMT)
Barb Linder in Saratoga re: MAS socket
Barb,
I too am an AK since 2004, and am currently using the MAS socket, so while I don't have a LOT of experience, here is my two cents worth.
I went from a liner and pin lock with an ischial (?) containment socket on my 1st, temporary socket to a suction, MAS style on the definitive.
I liked the security (no losing suction) of the liner/pin lock system, but over all, the MAS suction is more comfortable. I was the first of this type of socket for the prosthetist I had at the time, and it took us a long time (and the threat of moving to a different prosthetist) before it was "good enough".
A suction is harder to adjust throughout the day, you have to take it of and redo it, not just "twist" in the socket for adjustment. But on the plus side, because it is being suspended from the entire residual limb, not just hanging off the end, it feels lighter, and the leg is easier to swing forward.
Of course at the same time, I went from a straight hydraulic unit to a C-leg, compliments of worker's comp.
As long as you have a competent prosthetist, it should be pretty comfortable. The key is communication and not settling for what the prosthetist thinks is good enough, but what you find acceptable. You are paying for this to be done correctly.
Good luck.
Rick Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Tuesday, January 22, 2008 at 00:03:24 (GMT)
Rosemary Malarkey Social Worker...
The Barr Foundation Amputee Assistance Fund was established in 1995 through grants from the Barr Foundation. The mission of the fund is to provide assistance to amputees that cannot afford limbs, have no other financial resources, and to promote quality prosthetic care for all amputees. This is accomplished directly by providing reimbursement for materials and maintenance costs to prosthetists that provide limbs to amputees who have no other source of funding. This program is a cooperative effort between the Fund and the amputee's prosthetist to improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees whom have individuals, churches or business organizations to make tax deductible donations to the Barr Foundation whose funds can be specifically utilized for a select applicant.
In order for the amputee to receive an application, they must contact a board certified or state licensed prosthetist that may be willing to sponsor them.
The prosthetist ,considering sponsorship, must request the application directly from us by call 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that may be sponsoring him/her, prior to them requesting an application in the amputee's name. Please provide the prosthetist with the amputee's name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding unless another source of funding from an individual(s) or organization(s) is participating to share equally in the reimbursement level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening process by one or more members of the review committee upon submission of the application, which is to be completed by both amputee and prosthetist. The applicants will be considered based on need, first time for prosthetic rehabilitation, age and general health conditions. Sponsoring prosthetist must accept our reimbursement levels as payment in full and provide a six
(6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a condition of the approval by the sponsor, physical therapist or other qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us with a $25.00 nonrefundable application fee. We will then have 4-6 weeks to process the application and the prosthetist will be notified as to approval or denial. If the application is not received within the 30 day period of sending the application it will be cancelled and the prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Eva Barr
Barr Foundation
www.oandp.com/barr
www.ertlreconstruction.com
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, January 21, 2008 at 23:16:27 (GMT)
I am a social worker working with a patient who had a recent bka on his right leg. Shortly after his surgery he was informed that his insurance would not cover his prosthesis.
Beyond fighting this decision with his insurance company, can you offer any suggestions as to where else he might turn for help in funding the prosthesis?
Any advice would be great.
Thanks,
Rosemary Mullarkey <mullarkeylcsw@aol.com>
USA - Monday, January 21, 2008 at 23:11:02 (GMT)
Your Stumps R Us website is awesome and my family and I have learned a ton from postings.
I am an AKA since 2004, the result of a bloodclot that could not be cleared.
Does anyone have any information pro or con regarding the M.A.S. socket?
My prosthetist asked me to consider this type of socket for a new one.
Thanks for any help
Barbara Linder <buzzbarb@yahoo.com>
Saratoga, CA USA - Thursday, January 17, 2008 at 14:57:46 (GMT)
Test
joe <webmaster@stumps.org>
USA - Thursday, January 17, 2008 at 04:46:02 (GMT)
I was happy to stumble upon your website today.
My mom is a feisty and until-now healthy 92 year old, living with my 94-year old dad in SF.
This week, doctors at Cal Pacific Med Center amputated her leg below the knee due to vascular disease. She is in a great deal of pain, even with morphine. And she never complains about pain!
Today she was moved to the Post Accute Services on California Street.
Dan, my mom is frightened and so am I. I fully hope that she can go home again to live with my dad, with caregivers present.
With so many questions and so few answers, I am hoping that I can educate myself about her options through your website.
If she is able to go home, we must do serious modifications to her "row house" style home, where the garage is on the first floor and the living quarters is on the second floor.
So, if I can sign up, please allow me to. My mom is not Internet-savvy.
Also, if anyone has any immediate recommendations about caretakers in San Francisco or remodeling contractors... I am all ears.
Thank you!
Diane Martinet <dianenews@charter.net>
San Juan Bautista, CA USA - Friday, December 21, 2007 at 15:30:35 (GMT)
Almost 4 years after the amputation of my left leg A/K it seems that I must have a knee replacement for my right leg. Have any of you had this done and managed to stay active or become active again after the knee replacement?
I live in Germany where information from my doctor is not really forthcoming on what to expect..maybe he doesn't know as he hasn't had a case like mine before.
Thank you. I would appreciate any feedback!
Susan Heim <susan.heim@web.de>
Germany - Wednesday, December 19, 2007 at 15:07:43 (GMT)
Dear Carole in San Francisco...
Please call:
Amputee Car Controls...
Driving Specialties Limited
215 Commercial Street
Vallejo, CA 94589
(707) 553-1515 BUS
(707) 553-1504 FAX
Movable Accelerator Hand Controls
PHCIII Portable Vehicle Hand Controls. Cost $329.50. It can be moved from car to car. Check out
http://www.wheelability.com/labeled.htm
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, December 14, 2007 at 23:45:31 (GMT)
2 questions for fellow gimps.
1) What is the best driving technique for using the left foot? I'd like to be able to rent cars, but unless there is some sort of portable left accelerator (which I cannot fathom that Hertz would have), any tips for left foot driving would be appreciated.
2) Has anyone had a bad experience with hot tubs? I believe I picked up a whalloping infection at my stump site from my private, chlorine utilized hot tub.
Thanks so much for your great organization.
Carole McLaughlin <gewina@pacbell.net>
San Francisco, CA USA - Friday, December 14, 2007 at 23:41:20 (GMT)
A Succession of Angels
I was in Orlando, Florida, this week for my prosthetic leg. On Wednesday evening, I had kind of a magical hour. The prosthetic leg was fitting very well. So, before dinner I went for a walk by myself from my hotel in downtown Orlando, along Lake Eola — a straight route described to me by my sister Ruth, who had taken the same walk earlier in the day.
I started out on my walking journey, crossing a couple of major streets. I had to go fast to do that ... and I did. Then I walked almost effortlessly along this scenic route ... and everything and everyone seemed to sparkle, myself included. Freedom ... freedom of movement! The euphoria of walking on two legs once again (after a short inability) was making me high! I walked and glowed. People smiled, I smiled back. It was a dry, 75 degrees with a light breeze. Heavenly!
I arrived at my destination, a bookstore (which I later found out was the last independent bookstore in Orlando). I browsed around, selecting different titles. I plopped my few selections on the counter and asked if anyone had any recommendations. A friendly store clerk named Betsy kindly made some great recommendations. I settled on a book by Ann Dillard, The Maytrees.
During our interchange, Betsy happened to ask what brought me to Orlando, so I told her about my leg and prosthetist that I see there ... and, why I had traveled so far. She was very interested so I explained how the above-the-knee amputees seen on television are not the norm — they're the elite, the anomaly. That a lot of fantastic progress has been made in the technology of the knees and feet, but the socket fit (the part my half leg goes into) is still the crucial part. The part that has not advanced much. Sadly, socket technology has lagged behind the knees and the feet. Many above-the-knee amputees are not walking, or are very limited because their sockets don't fit properly. Like having a shoe that is the wrong size and filled with rocks, but you have to run a marathon in it and you can't possibly do that.
I have found a prosthetist here that is fitting above-the-knee amputees (AKAs as we are known) comfortably every day. He is committed to getting it right for the patient. He works until it is right — without any complaint or blaming the patient, something not many prosthetists do. His troubleshooting ability and teamwork are something I've never before experienced in 16 years as an amputee. It's always been an up-and-down process with the fitting, but I've NEVER worked with a more positive, compassionate, can-do and will-do person.
Betsy was amazed and said, "More people should know about him." I thought, "They will." Then she asked, “How did you find him?” I was surprised by this question, and I had to stop and reflect a minute, before replying with deep gratitude, "I was led by an angel."
A few minutes later, while walking back it came to me ... it was a succession of angels ... everyday angels, first Patty Rossbach, then Judge Farley, Merry Maiberger and Karen Hughes (all amputees). My succession of angels, people placed in my path along this journey. This journey that finally brought me to Orlando and to Stan "problems are solutions waiting to happen" Patterson. His technology is revolutionizing the fit for above-the-knee amputees, myself included. It's wonderful. Stan and his team are wonderful.
So, keep your eyes and your mind open ... because many angels walk among us.
www.becoming-whole.com
Meg Wolff <megwolff7@aol.com>
Orlando, Florida USA - Tuesday, December 04, 2007 at 14:34:03 (GMT)
Help please!
Hi and good morning!
Im Gail from Australia that lost limb left leg in car accident and now been dignosed after getting on with my happy, vibrant life with 3 autoimmune diseases.
The doctors in Australia say my outcome is poor.
Can anyone anywhere help?
They have tried me on dangerous medications to get me into a remission yet they break my stump down til it looks burnt real bad.I just want better treatments and not end up in wheelchair as its just not me. I want my life back.
I would be grateful to anyone that can help. I am prepared to travel anywhere in world rather than lose more of my leg/maybe other as joint in right not good now as diseases cause joint deformaties.
No cure yet. The doctors here say amputee's aren't a normal text book case and so they don't know what to do.
Someone must.
Are there other amputees that may have the same diseases that could help? I am so so desperate.
kind reguards
Gail
Thank you even if you read at least and unable to help, yet do hope can!!!
Gail Josephin'a <theprincess01@bigpond.com>
Australia - Thursday, November 29, 2007 at 22:49:31 (GMT)
I Am One Of You!
Hello, I am Lorie Carwile and I was so happy to see your website and how fun it looked. I live in Louisville, KY and am a bi-lateral BKA. I wish we had a group like you no-leggers out there.
My e-mail is Lorietatum1963@insightbb.com
Or
Lorie.Carwile@cardinalhealth.com
Lorie Carwile-Tatum <Lorietatum1963@insightbb.com >
Louisville, KY USA - Monday, November 19, 2007 at 20:45:04 (GMT)
Tonja in Oregon,
There are two support groups listed for Oregon on the Amputee Coalition of America's website. They do not include contact information but they are:
American Amputee Foundation of Oregon, and a group called OASES.
The ACA has a great website with lots of information and links to other websites as well for issues dealing with all parts of amputation. I check it regularly (I am an above knee now for just over three years).
You can also find a regional representative of the ACA in your area through the website who can assist you.
Best of luck!
Rick Morgan <rickanddev@yahoo.com>
Longview, WA USA - Saturday, November 17, 2007 at 16:33:37 (GMT)
My mother recently had her right leg amputated below the knee. She is only 56, she has diabetes and is a smoker.
It all started with her toe, then another then the foot and now the leg. These surgeries have all been back to back within the course of a few months.
She had the leg amputation on Nov. 6th, they sent her from the hospital to a nursing home last night; and of course she hates it there.
Do you know if there are any facilities that specialize in care for amputees? She is in San Bernardino, CA , so some place local would be preferable.
What support groups/ programs are there in this area that can help her (and her family) with this transition.
I look forward to hearing from you,
Thank you,
Elizabeth Gatgens <Elizabeth.Gatgens@Pacificlife.com>
San Bernardino, CA USA - Wednesday, November 14, 2007 at 03:48:43 (GMT)
Tonja Surgoen in Oregon...
Contact Brian Minard in Eugene at (541) 302-8275
Contact Janet Buck in Medford at (541) 608-6595
Brian had a support group there called PACE. Janet is a corresponding member of Stumps 'R Us.
Please let me know if you were able to contact either Brian and or Janet and whether they were of any assistance.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, November 12, 2007 at 23:08:18 (GMT)
I had a BK amputation in January of this year & I am trying to find an Oregon group. Do you have any recommendations?
I also have had a really positive attitude about my amputation until lately & just need to chat with some people in the same situation. Thank you for any help that you can provide.
Sincerely,
Tonja Surgoen
Tonja Surgoen <rvf@ccountry.net>
USA - Monday, November 12, 2007 at 23:05:14 (GMT)
ALPS Anti-Perspirant
Model:
Price: $13.96
Alps Antiperspirant with twice the Aluminum Chlorohydrate found in typical consumer brands to help control sweating within a socket or liner. ... more info
Alps Antiperspirant with twice the Aluminum Chlorohydrate found in typical consumer brands to help control sweating within a socket or liner. Specifically manufactured for amputees. Packaged in an easy to use spray bottle. 4 oz
Hi Dan,
I went into your reference links and found the following site
Amputee Supply Amputee Supply Company
There was the above deodorant mentioned by another person earlier.
So this should make it easier for those who can't get it through their prosthesis team. Also it lets you compare their price with this company's also don't forget S & H charges when buying on line.
Guess I will be doing a lot of surfing with all these reference links that you have. Sure gives a person something to do when they can't get up and drive some where to LOOK. I just love to go to stores and browse.
I gave my driver's license up after my second amputation. I didn't want to be driving down the street and have a phantom pain hit because they really make me stop what ever I'm doing.
Well seems like I'm going back to see how everybody is doing and if there are any new members.
Guess I should give a little more info about myself.
I retired at 60 cause I knew that I wasn't going to be able work much longer.
I'm a diabetic. In August 2003 I spent my 65 birthday in a drugged state at the hospital because they were trying to get the infection out of my left leg. Well it came down to take the leg and I live or don't and I die. So our daughter forced the issue with Wes to get him to sign the papers or she would.
So six months later in February 2004, I was in the hospital again with the right leg. The doctor took it off to the instep and a few days later there was complications. I told the doctor to take what ever he had to cause I didn't have time to get my heel healed.
I figured that I might as well kill two birds with one stone and get it over with.
So I survived and I'm still here. We are a retired US Army family. I retired from civil service at Fort Riley KS.
It seems that after we came back from Germany in 1984 my health just went out the door. I'm glad I went back to work as it gave me a lot of good memories when I have bad days. As I'm sure others have had to go through the same deal when it was their turn in dealing with their health problems.
When I was in my early 20's my mother gave me a good piece of advice.
"No matter how bad you feel there is always someone who is in worse shape than you." I've held that to be true all these years.
It takes a kindred soul to understand how I feel somedays, because they have been through it also. It is nice to be able to talk about some of the things I've been through and not feel that the person on the other end is being critical of what you are telling them.
Thank you for this open forum
Janet Toomey <wjtoomey@sbcglobal.net>
Herington, Kansas USA - Sunday, November 11, 2007 at 21:56:43 (GMT)
Ann Woolnough in the United Kingdom,
I admire your investigation and detective work regarding the use of drugs to combat Phantom Pain and the experience of others in the use of hip socket liners.
About drugs...I use self hypnosis to control Phantom Pain and or spasms when I get them. Other members of Stumps 'R Us use muscle relaxants, Bufferin or Aspirin or in one case, Chinese Moxie Sticks. It is an incense whose smoke seems to combat pain. That method did not work for me but it does work for Stumps member Karen Chu.
Amputees experience Phantom pain to varying degrees. Some have excruciating pain...some not at all. Those amputees who have had the ERTL Surgical Procedure described on page one of this web site performed by an ERTL trained Orthopedic Surgeon feel little or no Phantom Pain following surgery.
I have no experience with the hip socket question you posed so I asked our resident Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics his opinion. I will forward that information to you when I receive it.
Thank you for contributing to our online GUESTBOOK!
80 Year Old Dan Sorkin
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, November 11, 2007 at 15:07:00 (GMT)
I entered your site today and found it very interesting. I have a couple of questions I would like to ask.
I had a full amputation of my left leg in May this year. I went into hospital for a knee replacement and had the artery blocked at the back of the knee during the procedure. 6 ops in 10 days later I had the amputation.
Whilst I am coping well with the loss, like everyone I am suffering phantom pain and my doctor has prescribed Lyrica (pregabalin) a neurological nerve pain reliever, and amitripyline (usually used for epilepsy and convulsive treatment).
Due to the concern of taking too much medication, I have now ditched the amitripyline and just taking the pregabalin.
Have any of your group had experience of these drugs?
At the moment I have a full hip type socket and my hospital consultant has spoken about a silicon (rubber) type attachment for the leg.
Do your group members find this latter method an advantage?
I look forward to any information you can give me.
Regards,
Ann Woolnough age 72.
Ann Woolnough <a.woolnough@hotmail.co.uk>
England - Sunday, November 11, 2007 at 14:43:49 (GMT)
Tanya McCabe Portland, OR USA...
Antiperspirant
Hi, It is me again. I went down further on your web site and found that someone (Tanya McCabe) was having a problem with perspirant with their liners.
Same here!
So I found the perfect item at Wal Mart it is called "MONISTAT INTIMATE CARE". I started with the powder and then quite a time later they came out with a gel. So now I've had to switch back to the powder because of my right leg.
I had a pressure ulcer to break open on my left leg, right on the tip of the bone. I was in a electric wheel chair for a good 4 months. My leg has gotten bigger because I can't wear a shrinker. In fact I'm having a bit of a problem using the gel socks that they put you in when you are first put into a temp leg. But Anthony my prothesis guy says being up on my legs may help the right get smaller. (Yeah it is a little.)
So he is talking about taking me out of the pin liner and switching me to the vacuum system mention below. And since I saw her letter (Tanya McCabe). Figured I'd add my two cents to see if it will help her. Also I will ask my guy about the problems she is having with the vacuum system. So hopefully we can both win on this subject.
Glad to hear she (Tanya McCabe) is on her feet. I've had back surgery twice lower and neck and I'm not able to stand up straight anymore. Right now I hope to at least get the tenderness out of the tip of my leg so that I can put my full weight on the right leg. There are days I feel just like the old saying "between a rock and a hard place".
Seems the older I get I get to that spot a lot quicker than I did when I was younger. Oh by the way I'm 69.
Janet Toomey <wjtoomey@sbcglobal.net>
USA - Saturday, November 10, 2007 at 03:24:36 (GMT)
Janet Lee Toomey...
You do not have to be a Stumps 'R Us Member in order to post a question or answer.
The answer to any question you want to ask is out there somewhere.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, November 09, 2007 at 21:14:15 (GMT)
CAN YOU POST WITHOUT BEING A MEMBER?
I've read your letters before, but didn't save or inquire about it.
I ran across a lady saying she has lost a lot of her friends because of her amputation. I'm a 2 X's BKA so I thought I would give her a new friend.
Thanks
Janet Lee Toomey <wjtoomey@sbcglobal.net>
USA - Friday, November 09, 2007 at 21:11:04 (GMT)
Leslie Krewson in Ohio..
Don't you dare go anywhere else. You found the right web site. Help is on the way.
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 06, 2007 at 14:53:44 (GMT)
I Am A Transmetatarsal Amputee
On july 19, 2007 I had a transmetatarsal foot amputation. I found your site tonight, but wonder if it is really where I belong. Everyone else's issues seem so much more serious than mine.
Please let me know if there are others with my type of amputation to talk to on your site, or if I should go elsewhere, and if so, where.
Thanks.....it seems like a wonderful site!
God bless you all!
Leslie
Leslie Krewson <lkrewson47@yahoo.com>
Elyria, Ohio USA - Tuesday, November 06, 2007 at 14:51:30 (GMT)
Laura somewhere in Canada...
It is if you live in Canada and can't attend the Stumps 'R Us California monthly workshops.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, October 28, 2007 at 14:10:28 (GMT)
Hi Dan,
Re: Stumps R Us (California)
Cheerful Cripples...
Is the 'Guestbook' the 'support group' ?
Thanks,
Laura
Laura <laura_teacher2@yahoo.ca>
Canada - Sunday, October 28, 2007 at 14:08:06 (GMT)
I am using the College Park Trustep at present (trial period).
I'm not sure that I really like it. It is much better on uneven ground and even a little better when going up slight inclines. However it is somewhat like stepping down on a block of wood in normal walking. Not near as comfortable as the carbon fiber heel of the renegade. A little more shock than I'm used to.
I think the split-toe is the key for uneven ground.It also doesn't have quite the spring forward feel that the Renegade by Freedom Innovations has either.
I'm sure that it would just take some getting used to.
I am looking forward to trying the All terrain from Endolite. I'll report on that when I get it. I told the folks at Hanger that I would give the Trustep a decent trial.
More later
Dan Hunt <jdldhunt@bellsouth.net>
USA - Saturday, October 27, 2007 at 19:36:26 (GMT)
Has anyone used or know about the Bartlett Tendon?
I just read about it on the O and P Edge website (Oct. 2007).
http://www.oandp.com/edge/issues/articles/2007-10_04.asp
It looks great for riding a bike, which I have done with some limited success. I would like to stay with my upright instead of moving to a recumbant.
It also just looks great for all activities.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Wednesday, October 17, 2007 at 23:10:40 (GMT)
Subject: Alpha Liners
I just got this this morning. It appears that Ohio Willow Wood, has a recall on some of their liners. Here is the web site to find out if your liner is the one being recalled.
http://www.owwco.com/linersearch/status.aspx
PEGLEG JACK, Jacksonville. Texas, USA
Pegleg Jack Pickerd <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Wednesday, October 17, 2007 at 22:19:08 (GMT)
The best Rehabilitation Hospital I have found in the USA is the California Pacific Medical Center Davies Campus in San Francisco, California. Scott Rome, MD is the Director.
A majority of our Stumps Membership have had extraordinary, POSITIVE rehab experience there.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Tuesday, October 16, 2007 at 23:26:39 (GMT)
Hi Fellow Amputees...
I just got home after spending a month with about two hundred fellow amputees from all walks of life in one of Canada's largest, if not the largest rehabilitation hospital called The Chedoke Rehabilitation Hospital in Hamilton Ontario Canada.
You have to get your surgeon to refer you to this rehab centre and Dr. Sharon Grad.
Talk about a thorough work-over..
Wake up call is at 6am and if you want a decent cup of coffee you better move your butt.
This program is based on an aggressive physical therapy regime, so when we weren't in the gym or the pool working out we were snoring lol..
My pull through prosthesis was made for me on location with plastics and horse hide. They had four of us to a room, sorry Chedoke is run very much like boot camp, so if you've got a beef with someone you better speak up and work it out. There are both men and women from all ages. Spouses are encouraged to help out and generally we all go home on weekend passes. I live too far away to make use of a weekend pass, so I was one of but a few people rolling the halls in my wheelchair, but there are many things around to keep one entertained, so I wasn't bored.
I found in general everyone got along really well and we seemed to develop a special bond with one another.
Anyway, I just wanted to share my rehab story with you guys and to let you know there is help out there for us, we just have to hope our Doctor's know the best programs for us. (By the way I am eight months post-op from a radical below knee amputation)
I am going home October 26 to surprise my 90 year old mother by walking up the front steps of her house and knocking on the front door to wish her a very happy 90th birthday..... (Anything is possible)
Cheers to everyone from Don in Canada...
Don Levesque <Brydongrdns@netscape.ca >
Hamilton, Ontario Canada - Tuesday, October 16, 2007 at 23:20:14 (GMT)
Janet Stothers in Austin, Texas...
Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics says, "A well done SYMES would be much better in the long run. However they can be a difficult cosmetic challenge".
As far as an Orthopedic Surgeon in your area I would suggest an ERTL trained Orthopedic Surgeon.
On the ERTL Procedure section on page one of this web site you will find ERTL information and navigation to a directory of ERTL Procedure trained Doctors
Good luck!
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, October 03, 2007 at 12:45:48 (GMT)
My 50-year-old sister has damage to her left foot caused by blood pressure medications given her to recover from septic shock. The damage extends from her toes beyond the ball of her foot.
Originally we were expecting partial foot amputation. Now a surgeon has recommended Symes' amputation below the
ankle because it will give her better mobility with a prosthesis.
Any help you can provide that will help us research this and make a decision would be greatly appreciated.
She has no circulatory problems other than what was caused by the medications needed to save her life.
She lives near Austin, TX; and any suggestions for surgeons in that area would also be helpful.
Thanks,
Janet
Janet Stothers <stothers@sbcglobal.net>
Austin , Texas USA - Wednesday, October 03, 2007 at 12:38:59 (GMT)
Subject: All terrain foot
I have not tried it yet, and I have to admit it is designed and made by my prosthetist, but the Genesis foot by MICA looks like it would be pretty good.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Monday, September 17, 2007 at 22:18:43 (GMT)
Hey Anybody
Any feedback on the Endolite Elite(All terrain) foot? I looked at the Tru-step and the only draw back my prosthetist and I have is the replaceable bumpers. She thinks I'll go through 2-3 sets /year. Also just way more moving parts to wear out.
Does that make any sense?
The other foot she had suggested was the Freedom Innov. FS1000, but that doesn't look to have enough heel support for me. Who knows?!?
Let me know if you have experience with these feet...please.
Dan Hunt
DanSorkin wrote:
Certified Prosthetist Wayne Koniuk says, "*Inversion-foot turned to as if to look at the sole of the shoe. Eversion just the opposite.
Almost all of these feet come with a 30-45 day trial.
Check out College Park TruStep
Dan Hunt <jdldhunt@bellsouth.net>
USA - Saturday, September 15, 2007 at 20:55:49 (GMT)
I'm a 49 year old BK for 20 years, advanced teaching skier living in Charleston, WV.
I'm considering purchasing a TRIKKE (www.trikke.com). I would like to be put in touch with another BK TRIKKE owner before I spend the $500.00.
Any ideas?
Kevin D. Mann
1523 Quarrier St
Charleston, WV 25311
304-421-6556
Kevin Mann <kdmann2@yahoo.com>
Charleston, WV USA - Wednesday, August 29, 2007 at 03:31:27 (GMT)
Subject: Amputee Bicycling
To whom this may concern,
Hello my name is Kurt Yaeger and I am an amputee (BK). Prior to my amputation I was a professional bmx freestyle rider, X-games. I have ridden bikes my entire life. Since my amputation I have struggled with creating a suitable alternative to having a leg and riding a bike.
I am now in association with a company called ProTon Locks. This company has come up with an ingenius idea for pedals.
The traditional pedal system for an amputee was either a regular pedal which most of us struggled with or using clipless pedals. Neither of these systems worked well for amputees. The traditional pedal offered little or no help in regards to keeping your prosthetic in the correct position; your foot would slide off or hit the chainstay bar which would knock your foot off.
The clipless pedals locked your foot in well, however this type of pedal is hard to "get out of" and creates a dangerous situation.
The new device that ProTon Locks came up with is a magnetic system that allows your prosthetic foot to remain in place with little to no effort and at the same time creating an easy removal option if need be. This is by far the safest and most effective pedal that I have come across.
I would like to get the word out to other amputees about this product and have your organization take a look at this. Feel free to e-mail me or Dan Iller at ProTon Locks regarding any questions that may arise.
Thank you for your time,
Kurt Yaeger
The website is www.protonlocks.com
Kurt Yaeger <lameattack@hotmail.com>
USA - Tuesday, August 28, 2007 at 21:03:11 (GMT)
Hello,
I am a 38 year old B/K amputee in Connecticut. I was in a m/c accident on 8-11-06 and after 7 months of trying to get the leg to heal I had it amputated on 3-13-07.
Just wondering if there was anyone else from Connecticut out there.
Send me an E-mail, please.
Ed
Ed Tattoo <tattoo336@hotmail.com>
Northeast, Connecticut USA - Tuesday, August 28, 2007 at 20:53:09 (GMT)
Hi,
I'm Elizabeth from Pittsburg, CA and I'm ecstatic to find a group of cheerful people to connect with!
I'm 43, arthritic, with multiple joint replacements--including 5 of my right knee alone combating a staph infection I got in 1998. I've fought and fought, but now I'm finally throwing in the towel. I'm going to have my right leg amputated above the knee on September 24th.
It's kind of funny to write that knowing the people who read it are not going to recoil in shock, like everyone else I've told. People ask me how I am, and I end up comforting them--"Really, it's for the best. I'm actually looking forward to it." I've found the news can be a real conversation-killer.
I've lived the past few years with my right leg about 7-8 inches shorter than my left. With the help of a huge (but light) lift on my shoe and a huge brace on my knee, I've been able to walk (with crutches) and was actually up to three miles a day until this last flare-up of my infection made it clear that this is no life for me.
I was an active, vivacious, professional woman, and I want my life back. I've sat on the sidelines of my life all these years and now it's time to get back in the game.
I know this decision will greatly improve the quality of my life, but my knowledge of what I'm about to face is minimal. It seems I've found an environment in which I can ask my questions and maybe even crack my stupid jokes. That's very comforting to me.
Thanks,
Elizabeth
Elizabeth <betseymcquarrie@comcast.net>
Pittsburgh, CA USA - Monday, August 27, 2007 at 12:40:11 (GMT)
To Todd in Pocatello, ID...
Wow, what a story.
I too had a rod in my femur until too much infection caused my amputation to move from just above my ankle, to just above the knee on the right side. Mine was the result of an accident at work. When I tried claiming a double amputation to the State Claims adjuster she just said nice try, oh well.
Please put up a posting if you find the peg leg or skeleton leg you are looking for, I would love to have one. My first Halloween as an amp I dressed up as a pirate (I understand that is a common costume for us) and just wore the prosthetic I had since it is the modern day equivalent. The best part was when a 4 year old wanted to know if my leg was really broken or just part of the costume.
As Dan said, a sense of humor really helps. When I first realized there were no support groups in my area I debated starting one and calling it Amputees Anonymous. It would be like AA in that we would get together, discuss issues we were having, let others know of stuff we found out and just all around moral support. But it would only be a 6 step program (ba-dum-dum).
Hang in there.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Thursday, August 23, 2007 at 02:52:36 (GMT)
Todd in Pocatello, ID...
What fantastic survival instincts you had in order to save your 14 year old daughter from serious injury at enourmous cost to yourself. Your talent for survival coupled with the wit & humor you displayed here will serve you well.
My leg's off to you!
I had my Certified Prosthetist create a Peg Leg for me to use whenever I nstruct in airplanes (three times weekly). You can also pick up from eBay a used metal prosthesis to use at parties and Halloween. In fact your Certified Prosthetist will probably have a used one he cannot resell that you could use as a vehicle for entertainment.
About Phantom Pain...
Self hypnosis works for me. Try it!
Good luck Todd. Your Membership package is "In The Mail".
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 21, 2007 at 17:07:28 (GMT)
My name is Todd Bohn todd@bohnteam.com , www.greathomesinidaho.com ,
I am a 41yr old “investment property expert” realtor/hard core biker/father of 7 from Pocatello, Idaho.
I love your site. I just happened on stumps r us tonight while searching the internet for info about where to find a real peg leg or an anatomically correct metal skeleton foot (like the terminator) that I can wear for Halloween.
I’m being fitted next Tuesday for my first LBK prostheses. I decided in the intensive care unit that I’m gonna hafta have fun with this to help keep my attitude good. The day after the emergency amputation surgery I asked the team of doctors at the University of Utah Hospital if I could take my amputated leg home with me so I could have it stuffed and mounted with a brass plate saying TODD FINALLY PUT HIS FOOT DOWN AND HERE IT HANGS.
The doctors looked at me in horror and said “no, we burned it” I said “well, when I get my car fixed they let me have the old parts. Shouldn’t I be able to have my defective body parts???”
The looks on their faces was priceless.
My motorcycle and I had a disagreement with a pick-um-up truck that came around a corner in my lane on June 20th 2007. Needless to say, I lost the argument. My foot and lower left leg were virtually torn off by the front fender, I had a compound left femur fracture, crushed pelvis, my left arm has a compound fracture of the radius that still hasn’t healed and my left index finger was torn off (they sewed it back on but it doesn’t bend too well).
I now have a large plate bolting my pelvis together, a rod in my femur, a plate bolted to the 3 pieces of broken radius in my left arm and I’m missing 12 inches off my left leg including the foot. When people ask how I’m doing, I say “ I’m fantastic but a foot short” har, har.
One of my 14 year old daughters(I have triplets) was on the back of my bike when we hit the truck. I grabbed her with my right arm and pulled her off the back of the bike an instant before the collision. I landed on the asphalt on my back with my daughter riding on my chest. When we were finished sliding, she ended up with a scratch on one shoulder and one ankle. My biker buddies now call me “Tank” because the tank was about the only thing left of my Big Dog motor bike after the crash.
Now that I’m off the morphine (the DT’s really sucked) thanks Doc, I am having constant phantom pain. My missing toes are either on fire, getting struck by lightning bolts or they feel like I have an ingrown toenail. I’m going to try that acupuncture stuff. Any other ideas would be welcomed. The only remedy I’ve found so far is a few shots of Jagermeister, but the wife says I can’t do that every day. She’s probably right.
Oh yea, where can I find a terminator foot or peg-leg or other fun attachments other than that boring rubber foot.
Thanks for letting me purge my stump story
Tod
Todd Bohn <todd@bohnteam.com>
Pocatello, ID USA - Tuesday, August 21, 2007 at 16:56:10 (GMT)
David Gissen in Piedmont, CA,
Welcome to the Bay Area. Jody & I moved from Kingston Avenue in Piedmont (two blocks from Piedmont Avenue) 6 years ago to the retirement community of Rossmoor in Walnut Creek. We loved it in Piedmont but Rossmoor had what we really needed.
Please send me your complete USPS home address & telephone number and by return mail I will Priority Mail our Stumps 'R Us survival package to you.
Again, welcome to Northern California.
Dan Sorkin
www.stumps.org
Chief Stump
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 20, 2007 at 12:15:26 (GMT)
James in Halstead, PA...
My Certified Prosthetist at San Francisco Prosthetics says,
"If you think there is something wrong with the knee, Otto Bock will send a loaner knee,and check the function for you, they are great when the knee is under warranty. If this knee is not new you will find out then . Each knee has a serial under is easy to track.
The socket should be modified to make you more comfortable. Think about how it should be changed and ask your Prosthetist to get there slowly changing the socket for a few visits instead of all at once.
Call Otto Bock and tell them of your concern about the C-leg and I am sure that they will help you".
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 02, 2007 at 14:42:35 (GMT)
Pegleg Jack in Florida,
Accupuncture works for almost everybody. I am delighted it works for you!
I control my Phantom Pain with Self-Hypnosis. One of the female Stumps 'R Us members controls hers with Chinese Moxie Sticks. She lights them and the emitted smoke from the sticks wash over the Phanton Main source.
It works for her. I tried it. It did not work for me.
Good to hear from you again!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 01, 2007 at 00:40:18 (GMT)
DAN,
I am passing this on to you. I went out and had electric pulse and acupuncture treatment for my phantom pain that I was having in both of my legs, and WOW what a difference it made, haven't felt my stumps like this in years and was able to sleep with out using my shrinkers last night.
And the unusual fact is that I never had to take my legs off, it was all done up in both ears and you can feel it working as you are sitting on the table. I had about 8 needles in both ears for about 30 minutes and I could feel it working on my phantom pain that I would have when sitting down.
I highly recommend this to all amputees, but do realize that it may not work for everybody, because each and everyone of us is just a little different.
PEGLEG JACK
Jack Pickerd <sparksjwp60@suddenlink.net>
Florida USA - Wednesday, August 01, 2007 at 00:34:29 (GMT)
I've had a C-Leg (supposedly NEW) for almost one year but have had numerous problems with it, especially
recent conditions:
1. KNEE LOCK-UP occurs unexpectably and causes me to stumble & sometimes to fall.
Is this a mal-funtion of the micro-processor, the "stance-sensor" or a weak battery or whar?
2. SOCKET (2ND ) The upper hard-shell digs-into my groin area causing much discomfort. The prosthetists insists that he can't cut-it back, even an inch, to relieve this pressure for he says that the socket must extend that far to assure my support. To lessen irritation, discomfort, I've inserted a qauze pad between the silicon and the socket.
ANY OTHER SOLUTION?
3.INTEGRITY: Is there a possibility that I've been sold a USED C-LEG for I don't have a receipt or warranty document to indicate NEW?
HELP!
James Gurn <hesedhouse@epix.net>
Halstead, PA USA - Monday, July 30, 2007 at 20:24:19 (GMT)
Don in Tara Ontario, Canada,
What you are feeling is NORMAL! You have every right to be angry, frustrated and impatient. From your description it sounds as if you have an improperly fitted prosthetic device.
Precise fit is EVERYTHING!
No matter how high tech the device is if the socket fit is not PERFECT it will be uncomfortable and cause ulcers.
You have to be aggressive with your Certified Prosthetist in demanding a perfect fit. It does take time so don't be discouraged.
Again Don your venting is normal & healthy. You still have the proper attitude. I can only assure you IT DOES GET BETTER!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, July 28, 2007 at 16:36:27 (GMT)
Hi Dan and all....
Here I am again 6 months post-op Left BK. I think I would be lost out here on the farm in the middle of no where if it was not for your support site.
I started off so well right after surgery and was going full tilt with a healthy, positive attitude and all, but all of a sudden I started to get ulcers on my stump caused by my ill fitting temporary prosthesis and a limited medical support team here in the Bruce Peninsula. On top of it all my left leg is swollen and so painful that I am not able to transfer very well, so I am for the time being wheel chair bound.
I finally got to see the surgeon mid July and he told me the sores were caused by the prosthesis and sent me to the Chedoke clinic in Hamilton Ontario.
I am not able to drive anymore, so I've had to rely on support from volunteer drivers in my community. It is an eight hour drive round trip and I am pooped from having to go back and forth from Hamilton three days in a row.
The specialist there has come up with a plan for a different type of leg for me, but we have to wait for funding approval and then they will admit me to the clinic for a couple of weeks for fitting and to go through the rehabilitation all over again.
I guess I wouldn't mind so much, but I am out here on my own and I sit day after day doing the few exercises suggested to me by the team. I sound like a real complainer, but I guess I am just a little worried about how I will be able to get back to work and take control again.
I think I am a decent Christian man, but if I never see another Doctor or hospital it will be too soon LOL..
The really dumb thing about all this is that I am not worried about myself, I am worried about my dogs. They need exercise and fresh air and I can do very little to help them right now.
My big question is.. Our we allowed to have down days? our we allowed to get angry? I need to give myself a big kick in the butt and tell myself to get a grip, but I am finding it harder and harder to do that.
Thanks for letting me vent. I guess I just feel really stupid for allowing myself to let all this get to me.
Feedback would be appreciated and you can tell me to get my act together.
Cheers all Don Levesque in rural Canada
RR3 Tara, Ontario N0H2N0]
Brydongrnds@netscape.ca
Don Levesque <Brydongrnds@netscape.ca>
Tara, Ontario Canada - Saturday, July 28, 2007 at 16:19:56 (GMT)
Dear Fellow Gimps,
I first posted on this forum Wednesday, July 26, 2006 at 13:17:04 (GMT) I am a 38 year old left AK amputee, I have been since the age of 3. I wrote asking advice on what to look for in a surgeon as I was planning to have a tissue reduction surgery on my residual limb to remove the enormous about of loose flesh hoping that this will make being fitted with a prosthesis easier.
I posted an update on Thursday, July 12, 2007 at 01:39:10 (GMT) about finding a surgeon who felt confident in preforming the revision surgery to remove the large about of tissue that had grown on my stump. I posted that my surgery was scheduled to be preformed on Monday, July 23rd at 7am. I promised an update to that post... here goes.....
Well, it is done successfully!
Mechele <BryteEyez@aol.com>
West Fork, Arkansas USA - Saturday, July 28, 2007 at 02:24:11 (GMT)
Hello Dan and all Stumpies
Here goes folks I am a LBK and a RTMA so big deal. If you are a leg amp you put your leg on pretty much the same way I do, unless you are a double amp or a AK or a Hemi.
What do I like to do......play with my many cats! Yup my daughter has given me the title of THE CRAZY CAT LADY. I have 8 but will be giving up one since she no longer gets along with the pride. Or they don't get along with her, which ever came first. Love to play with my 5 grandchildren when I visit them. When my husband is not deployed or going to military school in another state I like to see him as well. You know the truly old saying, "If the Army had wanted you to have a wife they would have issued you one". No one reminded me of that when we married in 2000. Am I proud of him...does the sun shine in the sky????? Yup you bet. Also love to hang out at amp conventions and chat with folks, do some training of peer visitors for the ACA. Love my job the one that pays me money, I am a sign language interpreter, and I enjoy going to Deaf events. That should do it for now.
I live in VA so I most likely will not be showing up for many CA meetings. Was born in Jackson Heights NY but moved when I was 4, with my family, to West New York NJ, yes it is a real town. We could walk one block down from the apartment house to the BLVD and look up 42nd street. Hey now how is that for a trill a minute. Back in the late 50's and early 60's it was cool. Now the town is not even an inkling as to how I can remember it. Times do change.
My husband Bob as you read is in Kosovo right now. Due to come back to the states around the end of Nov. Where next? What does he wish to do when he grows up? We are not sure. See this is my second marriage and his first, get this gals I am 16 years older than Bob!!! No I did not marry him when I was in HS and he was in kindergarten. We are a fun couple tend to do our own things separately and together. Our best friends live on the base of Ft.
Belvoir, VA. Their youngest thinks I am part fairly godmother, part grandmother, part Miss Paula who comes to her house to play with her.
That is about it for now, hey write back to me, just please but in your message that you are from the amp group Stumps R Us. Of course I will check my junk mail since the mail allows all the sexual trash I DO NOT WANT and then sends stuff I do want to the junk file. Yikes.
See ya,
Paula
Paula Golladay <pgolladay@cox.net>
Belvoir, VA USA - Sunday, July 15, 2007 at 02:32:33 (GMT)
Paula in Falls Church, VA...
There is no fee to join the GUESTBOOK and read and respond to the entries. Should you ever come to California the Annual Stumps 'R Us Membership charge is $30 a year.
That entitles you to quarterly issues of our newsletter GIMPY and discounted member privileges at our monthly Northern California meeting/events which are posted on page one of this web site.
Our prayers are with your husband in Kosovo.
Dan Sorkin Chief Stump
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 13, 2007 at 15:26:01 (GMT)
Hello Dan,
In the way past I did hear of your group and looked at it and then with my mind leaking out of my ears forgot about it. DUH! I recall that it was hysterically funny. Aha, glad Ron King brought me back to the site.
So do I need to join to post on the web site? I did read that as I guest you could post, but does that allow me to post and read all or does joining, if you do do this, give me other privileges?
I am currently on the Heather Mills List, ok she is not my fave rave amputee but I like most of the folks on the site. I am also a lister on the Amp List on Yahoo.
I am Paula Golladay, LBK 2002 from osteoporosis, and a RTMA for the same reason in 2004. I am 58 and very proud of it by the way, I have a wonderful husband who is currently deployed in Kosovo this time around. Mom of two fully grown adults and the grandmother of 5 wonderful grand kids, all from my youngest daughter.
My homes address is:
Paula Golladay
6031 Madison Overlook Court
Falls Church, VA 22041
(Sorry it would be a long commute to physically get to the meetings, giggle, giggle)
Home phone 703 820 7987 (I am bad about listening to the answering machine messages)
Cell/Work Phone 703 304 5755 ( I do listen to these messages since it is business connected put can't answer the phone while I am interpreting)
Email: pgolladay@cox.net please put in the subject line that you are from Stumps R Us and I will keep an eye on my in box and my junk mail just in case my filters send the message to the junk file. Not you to the junk file.
Hope to hear from you soon,
Active Gimp
Paula
Paula. Golladay <pgolladay@cox.net>
Falls Church, VA USA - Friday, July 13, 2007 at 15:12:05 (GMT)
Hi Dan,
My name is Aimee Dryer. My husband Mitch is an Oneida, NY firefighter and was injured on April 22nd when a roof collapsed on him and his lieutenant while fighting a fire at a bowling alley. He subsequently had his right arm removed above the elbow on May 15th due to the 4th degree burns that completely severed his ulnar nerve.
We decided as a couple and as a family to have that done instead of having his elbow fused. We thought that by doing this he would have a better quality of life with a prosthetic than he would by having his elbow fused and not being able to move his elbow.
He had his ulnar nerve removed in a previous surgery before the amputation and we did not know to what extent if any of the use of his first three digits of his hand.
Since he had his ulnar nerve removed he would never move that the last two. He was in the hospital from April 22nd. of which he spent almost three weeks in a medically induced coma, and was discharged to the Rehabilitation Unit on June 6th. He went home on June 20th - which happened to be his two year anniversary with the fire depatment.
He had a police and fire truck escort all the way home from Syracuse. It was absolutely wonderful.
Mitch was burned over 20% of his body - all on the right side. He will need cosmetic surgery on his right ear.
While having to deal with all of the other things - I think the most difficult is his amputation... he was right handed. He seems to have a good spirit and seems to be coping well but I can see that he gets down and easily frustrated because he doesn't always see progress. I need him to understand that it will take time and will not happen overnight.
He is a very stubborn and determined man!
Well - it is late. Thank you for taking the time to read this. Please feel free to post and have anyone email me with suggestions or help on anything. We are very very new at this and I could use any advice people are willing to give.
Thank you very much,
Aimee Dryer
Aimee Dryer <mitchellandaimee@twcny.rr.com>
Oneida, NY USA - Friday, July 13, 2007 at 14:51:03 (GMT)
I first posted on this forum Wednesday, July 26, 2006 at 13:17:04 (GMT) I am a 38 year old left AK amputee, I have been since the age of 3. I wrote asking advice on what to look for in a surgeon as I was planning to have a tissue reduction surgery on my residual limb to remove the enormous about of loose flesh hoping that this will make being fitted with a prosthesis easier.
Now, approx 1 year later, I have finally accomplished what I feared was going to be impossible. I found not only 1 but 2 surgeon that are willing and are certain they can remove all of this tissue.
As I stated in my previous post the surgeon who attempted it last time claimed "too many blood vessels thwarted his attempt." I was disappointed, hearbroken and was out of my prosthesis for 6 weeks for no good reason, He did nothing to prevent the residual limb from swelling (edema??) while outside of the prosthsis for so long.
I talked these Dr's absoultely BLUE. I had a whole page of questions and did not let them leave the exam room until I felt ever question was answered to my satisfaction. So on July 23rd at 5am I will be entering in to the pre-anesthsia room to prepare for by tissue reduction surgery that will begin at 7am. I am excited, nervous, apprehensive, and fearful of my expectations based on what the surgeons told me the results would be.
And a funny thing about it.. is I am also wondering what my life will be like without the 10 lbs of loose flesh hanging off my left butt cheek, to actually have a left butt cheek again. and even funnier, I think I am going to be a bit nostalgic, (I think i am actually going to miss all that flesh!) I know, I know I am completely insane! lol. I will post again after the surgery to update once again about the outcome.
Mechele
Mechele <BryteEyez@aol.com >
????????????, ?? USA - Thursday, July 12, 2007 at 01:39:10 (GMT)
Dear Meg,
Thank you! Your success story was wonderful to read about. Thank God you are able to not only wear a prosthetic device but as a bonus you found a Certified Prosthetist that knows what he is doing!
Certified Prosthetists like Stan Peterson in Miami are rare in this culture. I only know of one other that takes a vital interest in his patients and is willing and able to spend the time necessary to solve ALL of the amputee's problems. He is Wayne Koniuk of San Francisco Prosthetics in San Francisco, CA. Wayne Koniuk and Stan Patterson are craftsman cut from the same cloth.
Thank you for bringing me up to date on your progress.
Dan Sorkin
www.stumps.org
Chief Stump
Too often we enjoy the comfort of opinion
without the discomfort of thought."
...john f. kennedy
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, July 12, 2007 at 00:08:49 (GMT)
Dear Dan,
I wrote you at the beginning of the year in search of a prosthetist. Things were not going well for me with my AKA prosthesis and I was looking for help. (I'm sure you hear a lot of his.) Well, decided to send you a POSITIVE story as mine turned out that way. Yeah! You probably don't always here the GOOD stuff!
Recently someone wrote and asked how things were going for me and what happened with NY? And what was happening with me now? Afterward I decided to send the reply to you as I thought you might like to know. This is it!
No, NY didnt work out for me. In the beginning it did, but my prosthetist wasn't able to maintain the fit as my limb changed. After another year of travel back and forth to NY every other week(a 7 hour drive each way from Maine) I got to the point where the leg was hurting so much I couldn't wear it. With my subsequent trips it didn't get any better. I was starting to say to my family, "This is killing me."
So, I thought I'd better stop going to NY.
I went for 3 months on crutches which wasn't what I wanted, but was at a loss for what to do. I got really tired of it, but focused on my work. Then started doing book signings on one leg and got pretty comfortable with that, but it was SO hard to get any excercise on one and I felt given my motivation, good health, good weight, and other things I had in my favor this shouldn't have to be my fate.
Then I set an intention about what I wanted, wrote it down (sent it to Stumps Are Us) and did more research. Then I let it go.
I didn't think I'd travel to Florida for a prosthesis, but three months later I did. It's only a 2 1/2 hour flight to Orlando from Boston (non-stop). There's soon to be a direct flight from Portland, Maine. And the leg is comfortable to sit and stand on, so no problem with flying. I couldn't have done that with the other leg.
So, I now go to Stan Patterson at P&O Associates. He has developed this elevated socket system for above knee amputees. It is a revolutionizing fit for AKA's, and he's teaching this to other prosthetists. I rode a stationary bike comfortably and walked a mile on the treadmill the third day there in a test socket. My good luck continues, and Stan is very supportive as far as being available if I have any problems. He is teaching me the system so that I can make adjustments if I have to. The best part is...he listen's to me. And it work's out great!
Stan Patterson is an incredible person. Very intelligent, compassionate, positive...his motto is, "problems are solutions waiting to happen". And he's really passionate about what he's doing. A born teacher, he loves to explain things as he knows this system in and out. He was willing to work with me in spite of problems with my insurance, since I had already been billed by the other place. He also has a great team of people working for him and they all work well together.
I walked 2 miles the other day. Haven't done that in MANY years. Stan believes that I will be running a 5K. I'm going to go see Bob Gailey (PT for gait training) in Miami when the weather cools down in the fall.
It's nice to have someone who believes in me, like I believe in myself!
So, it all worked out for the best (though it was a long road). Isn't it ALWAYS?!
Thanks for your comment and concern. I appreciate your inquiry.
All the best,
Meg
Dan thank you too for being "out there" in cyber space to listen to our requests, inquiries, etc. You do a great service as well. Thank you! Meg Wolff
BLOG: www.becoming-whole.com ~~~~~ WEBSITE: www.megwolff.com ~~~~~ EMAIL: megwolff7@aol.com
Meg Wolff <megwolff7@aol.com>
Portland, ME USA - Thursday, July 12, 2007 at 00:05:23 (GMT)
Hi!
I am a 50 year old woman who woke up on Feb. 25, 2006 with a my leg ice cold. I had my leg removed below the knee on June 19, 2006 at the Cleveland Clinic.
There is no support group in my area. I would like some support from any woman who has lost their leg.
I lost most of my friends because they can't deal with me as a amputee.
Please help,
Sincerely,
Barb Smith
Valley Grove, WV 26060
Barb Smith <Barbkasesmith@aol.com>
Valley Grove, WV USA - Wednesday, July 11, 2007 at 01:51:47 (GMT)
Hello everyone,
Just a one time mailing trying to reach out....
I just recently about 6 months ago lost my left leg below the knee and since than I have been trying to get in touch with others who may have similar situations....
Please visit my website:
http://www.artificiallimbsprosthesis.com
I am looking to see if I can help some who may not be able to get a chance to walk again - some hospitals cover the prosthesis and some don't -
I have heard so much about people being able to walk again with real good lookings like real legs ...
If you know of anyone who doesn't have insurance coverage and would like to walk agan - I hear that the prosthesis cost is real high like about 8-10K
I heard of this hospital in India where they can help. I have been in touch with the doctors there and I feel that this might help to avoid high costs and be able to walk again and be able to work again.
Cathie Kaur
Cathie Kaur <allamputees@yahoo.com>
?, ? ? - Friday, July 06, 2007 at 00:53:55 (GMT)
Subject:Ossur seal in sucktion socket for A/K
I have correspond with you in the past since I had trouble using the Ossur sealin for above knee amputation.
Well I finally last November found a Hangar office in Florida that made a proper fit and things were good. I was however gaining weight so I started a diet program along with more exercise and the fit becam loose enough that I completelly lost suction and the leg actually dropped off!
I was able to recover and hold it on by addingd socks per instructions and put them under the seal. The leg fit better but gradually I started to lose suction and the air valve would purge air on and off. I could feel my leg pistoning.
I went to the local office and they said for now to put socks inside the liner to fix the problem.
I tried that and it helps a bit but a number of amputees who have that system say that is not a good way to do it.
What is your opinion?
One expert recommended I try to place some ring under both sides of the sealin.
Have you heard of people doing that? Do you have any kits that may correct the problem?
Regards
Dave
Dave Lovull <dlovull1@rochester.rr.com>
USA - Monday, July 02, 2007 at 13:57:43 (GMT)
Hi Doug Hollowell ,
I'm 42 and had a hip disarticulation (not a hemipelvectomy) in 2004 due to a collision with a drunk in a pickup versus me on my bike up near Lake Berryessa.
While we are definitely a minority as far as amputees go, life does indeed go on with only one leg. Prosthetics are available, and I have one, but many HD's prefer to skip it all together, its a personal choice. They can be very cumbersome, and a lot of people, me included, find that they can just move faster and more comfortable on crutches and or a wheelchair. I use both depending on the situation.
I live in a condo with no special adaptive equipment, other than some grab handles in the bathroom and a shower stool. The key is having good PT/OT (physical and occupational therapy) after you recover from the surgery. Those wonderful folks taught me how to live indendently in a pretty short period of time during my stay at Walter Reed.
As mine was a left leg amputation, the only thing my car has to have is an automatic, as I can't press the clutch anymore. It was hard saying goodbye to my 5 speed and motorcycles, but as I said, life goes on. I still get to go to A's games, and many other things I had always done.
I met a fellow HD right leg amputee and he just taught himself to drive with his left foot, and he uses nothing special in his car either.
I can't answer the question about funding, as I was active duty Air Force when I was run over (stationed right by you at Travis actually), so the VA takes care of me pretty well in that department.
If it's a choice between getting infected and dying, or losing the leg, I would say the sooner you get started, the sooner you get over the rehab and get on with life!
Good luck and if you have any specific questions, feel free to email at the address below!
Ed Donnelly
Pt. Richmond Ca
itsed65@yahoo.com
Ed Donnelly <itsed65@yahoo.com>
Point Richmond, CA USA - Friday, June 29, 2007 at 19:56:20 (GMT)
Hi Dan,
My name is Doug Hollowell and I'm a neighbor of yours over here in Suisun City. I'm 51 years old, and I had my first hip replacements when I was 20, a result of Ankylosing Spondylitis.
Over the years, I've had revisions of both sides, but my right side has been the "problem child". Around 1998, I was informed that my right femur was eroding away, My orthopedic doctors tried adding pieces of cadaver bone during surgeries, but the problem continued. They even tried using an entire cadaver femur, with no luck.
Around 1999, I had my right knee and femur replaced. The specialist told me I was his second patient with a titanium femur, so I knew I was heading into uncharted waters. Well, everything went great for five years, until I developed an infection in the right hip, femur and knee. I've been told that there is nearly no chance of getting rid of the infection because once an infection gets into the metal parts there are no drugs that can clear it up.
Since 2005, I've had to have surgeries every 6-8 months to clean out pockets of infected pus that build up, primarily in my hip. Recently, I was told that the most successful way of ridding my body of the infection is to have a total hip disarticulation and, possibly, a hemipelvectomy.
I'm having a difficult time adjusting to the thought of losing my right leg. I'm hoping some of your group can give me insight to living life with one leg gone. I'd also like to find out what resources are available for making my home more accessible after the surgery.
I suppose, given enough time, I'll adjust to living without my leg, but I've gotta believe that there must be plenty of gadgets available to make life a little easier.
I'd also be interested to find out if there are any funds available somewhere to help defray the cost of changing ones home, car, etc. so that the adjustment doesn't break a person, financially.
Anyway, I'd like to hear from anyone who has gone through either a hip disarticulation, with or without a hemipelvectomy. This is a big decision, and I would like as much feedback as I can get.
Sincerely,
Doug Hollowell
505 Acapulco Court
Suisun City, CA 94585
707-422-1743
Doug Hollowell <hollow7@pacbell.net>
Suisun City, CA USA - Tuesday, June 26, 2007 at 23:24:59 (GMT)
Hello all,
I am a high powerline worker who lost my right leg below the knee 2.5 years ago. I am just curious to see if anyone has had any luck with Ossur's Proprio foot.
I live in eastern Washington(mountainous) and am hoping this foot will give me more mobility to accomplish my job climbing power poles?
Well hope to hear from some positive and negative imput,
Thanks for the site. I come to visit often. I have been given this afliction because my higher power knows that I will strive to be the best I can be and be a positive example to others.
THANKS SO MUCH
Steve Russ <madmuttly@yahoo.com>
Republic, WA USA - Tuesday, June 26, 2007 at 13:35:19 (GMT)
Hi,
It has been about a year and I still have issues with these Harmony Liners.
I'd like to find a liner from another firm that will work with the Harmony system. My next system will more than likely not be a Harmony unit.
I did try the Smith Liner. It does not work very well with the Harmony System. The Liners made for the Harmony,are just not durable... I believe the device should not even be sold, due to the durability issues.
Thanks.
Lee Thomas
leethomas@charter.net (note my e-mail has changed)
Lee Thomas <leethomas@charter.net>
St Louis , MO USA - Monday, June 25, 2007 at 23:25:43 (GMT)
Hi Dan and all;
Here I am again four months post up from a BK amp in Jan. Things were going great guns with my temporary prosthesis and I suspect that I dove in too fast and now I have developed several pressure sores on the residual stump.
My major problem is that I live many hours from medical support. At my last appointment with the nearest amp team I was told not to wear my prosthesis and to keep off my good leg as much as possible because the good leg is very sore especially when sitting still.
Now what?
The latest info from the amp team is to send me to a specialist in the big city to see about using another prosthesis system that has softer units against my skin.
I've felt that the temporary prosthesis didn't fit properly right from the get go?
The Doc told me that he didn't think the sores I have are caused by using the prosthesis, but they didn't invent themselves and they only appeared after using the temp leg??
I was a little distraught, but I can't afford the lack of communication between the medical wizards to keep me from reaching my goals.
Anyone have any tips on a different type of prosthesis that might work for me??
I am a very tall man tipping the scales at just over 200 lbs. ( I am 6' 3)
I enjoy reading what everyone has the courage to share and I welcome feedback.
Cheers all and take time to enjoy the summer
Don Levesque <Brydongrdns@netscape.ca >
Tara, Ontario Canada - Wednesday, June 13, 2007 at 18:05:15 (GMT)
Hi, I'm a Transmetatarsal Amputee (partical foot).
I wanted to know if there is anyone online that is a transmetatarsal amputee?
I currently have a posthetist but I don't think it's going to work out because he was trying to make a prosthesis for a Syme's Amputation. I don't have a Syme's Amputation. I told him that I didn't want that.
Then he showed me another type of product called a amputation gauntlet.
It looks like a leather boot that is supposed to fit in your shoe and it laces up in the front. I'm not happy with that solution either. He told me that I would have to send the shoe that I wanted it to fit so they can get the exact measurements for the insert.
But, there is a catch this insert my not fit all of my shoes. I want something that is interchangeable and will fit in any shoe that I decide to wear. Is there anyone out there that can give me some ideas of what to do. I'm starting to become very frustrated because the prosthetist and I have been trying to come up with something for about 2 weeks now.
Carmen
Atlanta, GA 30316 USA
Carmen Vita-Lopez <carmenvitalopez@comcast.net>
Atlanta, CA USA - Friday, June 08, 2007 at 19:29:13 (GMT)
Hi,
A little about me:
Due to burns when I was 2, I had both legs amputated below the knee when I was around 18( I'm 33 now). Because of the burns my stumps are extra sensitive plus I now have a bone spur. I can't handle anything hard on bottom of my stumps what's so ever. Due to other medical reasons I have to live with both of these types of pain.
I found your site while doing research on a few things related to amputees.
1: RTV foam for use as end pads. I was wondering if any of your readers had any 1st hand knowledge different types of foam. The only one I've tried in the past was A-2370. I'm not sure but the foam feels harder now and not sure if they changed how its made.
2: Due to having poorly made prosthetics for over 7 years I'm looking for some advice on getting my stumps used to pressure points that haven't had any direct contact for awhile. This is all due to my last set being made poorly and a local company that I finally gave up on after 3 years of them trying to make a good fitting leg. I've finally got a company I really like but a lot of places cant handle contact.. manly my calf muscles.
3: Due to burns the bottom of my stumps can't handle a lot of weight. Are there any tricks to help desensitize them. My nerves are over active. With just having a soft pad contact it is painful. For years I've haven't had any real contact on the bottoms and always get major water blisters because of the suction effect. So I'm trying to get used to contact.
Thanks Garrett
Garrett Fraini <cathryes@Yahoo.com>
Hemet, CA USA - Monday, June 04, 2007 at 21:55:47 (GMT)
Hello again,
I had my leg amputated in January of this year, I'm a LBK but currently walk with a stiff knee (I have a thigh corset) but spent years before this in a wheelchair with a useless leg. So, it's great finally being able to walk again.
I'm in my early 20s and it'll be great to speak to anyone around my age.
I look forward to hearing from you!
Katie <Kattiej85@aol.com>
England - Wednesday, May 16, 2007 at 15:43:38 (GMT)
Stumps R Us - casting call
Hello,
I have recently become involved in a movie being produced in Cardiff (UK), and not to beat about the bush, we are looking for amputees in the area who would be willing to play zombies for a few days.
I understand that for some of you this may be viewed as in poor taste, however I'm sure some would love the chance to be involved in this project.
Anyone Interested, email me.
Thank you for your time,
Neil Harper
Neil Harper <neil_j_harper@hotmail.com>
USA - Monday, May 07, 2007 at 22:49:49 (GMT)
Dear Celeste,
Thank you for sharing you ERTL procedure success with us. So many members of Stumps 'R Us echo your praise of this remarkable surgical procedure.
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, May 07, 2007 at 20:26:56 (GMT)
Hi Dan,
My name is Celeste and I found your email online. I was reading some of your advice about the ERTL procedure and I totally agreed with it. Dr. Ertl was my surgeon for over thirteen years, but has since left my HMO. His remarkable procedure gave me back a little bit of what my life was like before the amputation.
Celeste
Celeste <celeste93@peoplepc.com>
USA - Monday, May 07, 2007 at 20:24:16 (GMT)
Hi folks,
Here I am again.
I really appreciate all the feedback. When you send me a note could you refer to "Stumps R Us" in your subject line. I won't open email if I don't know who or where it originates.
I've had some bad days recently.
I guess the concept is just hitting home and I'm having problems with my temp leg. I don't know why, but something snapped in it and I can't wear it until I get to the city and see the folks at the clinic.
I suspect I picked up a virus at the hospital because I can't seem to get going. Anyone else have any problems with taking Lyrica pregabalin making your arms and legs feel numb?
For me going to the hospital is a three or four hour drive each way and by the time I get home I am a wreck lol.
I think one really has to keep a positive attitude and take it one day at a time?
Cheers to all and thanks again for all the help.
Cheers Don
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Monday, April 30, 2007 at 20:47:37 (GMT)
Hi Rick,
Although I do not know of one, it is my understanding that the e-vac system will work well for an AK. Your best bet is to have you CP contact the company that manufactures the system The name of the company is Smith Global. Good luck.
Jerry Bach <jjbach@aol.com >
USA - Wednesday, April 25, 2007 at 14:32:40 (GMT)
Rick you could contact
sales@ smithglobal.com
They are the manufaturers of the EVAC
jerry davis <jd97531@sbcglobal.net>
USA - Wednesday, April 25, 2007 at 13:41:43 (GMT)
Jerry & Joe
Unlike you two, I am an AK, due to a work injury 2 1/2 years ago. I used the liner and pin lock on my first knee, and still use it when I ride my bike, as I don't worry about it coming off as much. I use a suction fit MAS style socket on my C-leg I use everyday, and over all I like it more. Whether that is because the knee is easier to use, the shape of the socket, or the style of suspension, I do not know.
Do either of you (or anyone) know if the vacuum fit is available for Aks? I have heard about it, but do not know too much about it. I am not due for another leg/socket combo for a while, unless my shape changes.
For everyone else, I want to say thanks for being out there. I read this website, and another called Above Knee Amputee once or twice a week each, and even though I don't contribute very often, I like to "touch base" every so often, and see how/what everyone else is doing. Just knowing you all are out there is comforting. I don't run (no pun intended) into other amputees in my daily life, and there are no support groups locally (SW Washington State), so this is my outlet.
Thanks again,
Rick
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Tuesday, April 24, 2007 at 16:23:04 (GMT)
Jerry:
I am rbk since 2001. I used the Alpha liner pin lock for 5 years and currently using the evac for the past 9 months.
I wouldn't go back to the pin lock system for any reason that I could imagine.
Like you I work long hours, 12, not 24, but long. With the pin lock I had to stop and readjust the leg every few hours. With the e-vac, I never stop. I can even take my pants and shoes off without removing my leg.
The only issue we both have is the sleeve. I am looking for the answer as well as you. So, whoever comes up with the best answer wins. I am going to try a new sleeve soon and will let you know the results. I am also going to try a cover over the sleeve for added protection, like the covers listed under sleeve art which is a link here .
Hopefully that will help.
Joe
Joe Bach <jjbach@aol.com>
USA - Tuesday, April 24, 2007 at 15:02:53 (GMT)
I was amputated L B/K in 2003. Ive been in a suction system harmony and now an evac. I would like to know what other amps prefer.
I am very active, sometimes working as much as 14 to 24 hours a day as a longshoreman.
The suction works very well except for tears in the sealing sleeves which happen quite often as I work around a lot of metal. Even though I work long hours I never have to add socks.
Just wondering how other amps like the pin locking system.
Thanks
Jerry Davis <jd97531@sbcglobal.net>
USA - Monday, April 23, 2007 at 21:42:13 (GMT)
Thanks all for the support from Don in Canada
Just a quick note to say thanks for the great support. It really helps. I get a little nervous out here on my own, but I am sure I will do fine.
Just a little laugh for you.
I was letting the dog out of the side door of my old farm house and forgot to put the brake on the wheelchair. I bent over to let the little guy out and I and the wheelchair went sliding out the door. I was laughing so hard that I couldn't get back up for a few minutes and the dog thought I was playing so I had him all over wanting to play tug of war with my shrinker sock lol.. I thought you'd get a kick out of that.
Well, it's late for me to be up so I am off to bed..
Take care all and thanks again for all the kind words of support.
Cheers Don
Brydongrdns@netscape.ca
RR 3 Tara, Ont. N0H 2N0
Don <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, April 22, 2007 at 04:23:35 (GMT)
Hi Don in Canada...
You bring back memories of what I went through 6 years ago.
I came home just like you and went through the same thought process.
I started walking just like you and every day just went a little further. First to the front yard. Then to the end of the drive, before I know it, I was at the top of the street. Within a few months I was waling "the dog" for over an hour and even in the woods. This is after working a 10 hour shift.
My temporary leg lasted about 8 months before I receive my permanent leg. I just got my second permanent leg about 6 months ago.
So, hang in there my friend and before you know it you will be walking the dogs like you did before.
BTW: The dog I walk is my son's pitt bull, also on a leash.
Joe
Joe Bach <jjbach@aol.com>
USA - Friday, April 20, 2007 at 14:06:21 (GMT)
Don Levesque in Canada,
It has been my experience that the temporary prosthesis is replaced with a "permanent" one after 6 to 8 months depending on when the stump stops shrinking. I say "permanent" because they do wear out or need maintenance from time to time. Mine last from 3 to 5 years.
I have a hard socket with a RENEGADE foot made by FREEDOM INNOVATIONS. I love it because it allows me to walk on uneven surfaces and up and down inclined planes with no discomfort.
Once you are fitted with a prosthesis and have learned to walk with it you will have no problem walking the dogs.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, April 18, 2007 at 22:35:26 (GMT)
Hi,
I was discharged from hospital Friday the 13th and it is great to be home.
I think it is important that I don't get lazy about my exercises so I try to walk (albeit assisted with crutches) the length of our lane on the farm twice a day (about 1000 ft.) I've yet to figure out how I am going to walk the dogs. I can't let them off their leashes as they would be off hunting in the woods and I would be lucky if they managed to return.
Anyone got any hints on that one?
The other question I have is how long does one usually work with the temporary prosthesis before I get fitted with my permanent leg, or is that always a work in progress?
I sure felt for Heather Mills when she fell dancing on TV. My heart really went out to her. I don't usually watch programs like "Dancing with the Stars", but I wanted to see how she made out.
I have a lot of respect for anyone who tries to overcome what ever challenge one might have..
The snow is almost all gone from this part of our province in Ontario, but it is still a tad chilly.
Cheers to all
Don
Brydongrdns@netscape.ca
RR 3 Tara Ontario N0H 2N0
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Wednesday, April 18, 2007 at 22:20:53 (GMT)
I first wrote back in November 2006 about my B/K. Since the time of my writing I am still totally disabled and bedbound. I was in a felony hit and run accident on October 23, 2006 and everyone, even my orthos were amazed at my recovery and release to home on November 19th. I was only home for four weeks of healing time due to a shattered left leg that needs bone insertion (part of hip or pelvis), plates and pins. When I went in on December 19th I expected to wake up with the efixiator off and a splint on my left leg, but woke up to the efix in a new position.
They found infection in my bone due to the dirt when I ejected and antibiotic therapy was started.
In January infection in my amputated limb was found due to absesses so more irrigation and antibiotics. I am now still waiting on word from the second lab to tell Infectious Disease if they are even treating both with the right medications as they do not even know if it is the same bacteria they are fighting.
I still keep my faith due to findingthis site and also a book called "Way of the Peaceful Warrior" see www.danmillman.com tell them Cheryl from Florida sent you, as his assistant sent me an autographed book, which is a must read for all about living in today and how we all have a purpose, but I do find myself more depressed as time goes by.
They keep telling me they should get the results back at anytime and they cannot take a chance with this as they have one chance to save my left leg and I do understand, and that alot of samples get sent in constantly but find myself wondering why it takes so long, and when will I ever move forward.
As I read through the guest book and see alot talk about infection it does help me to not feel alone in this fight but was hoping for some possible feedback from anyone who has been through infection related setbacks to help me to understand the wait and know the time framing others have been through. I have been told that I will be able to do everything I did before and I believe that as I am a fighter but just need to feel that I am somehow moving somewhere forward in this process.
I look through the different prosthesis information you sent me but they cannot fit me until they know there is no infection so even though I have a prescription for my beginnner prosthesis that is on hold too.
I guess I am just reaching out for some advice and inspiration from others in my situation. I have alot of support from my devoted husband, children, and small circle of friends but for them they do not know from experience how this can be, like everyone here does.
Sorry to be so long winded but I wanted to include all information related to my situation, and also wondering how advanced of a prosthesis I can get now that I no longer have health insurance and am on a share of cost Medicaid plan my share of cost makes no sense to me.
I live in Florida and was told that my beginner prosthesis would become my swimming/shower one as I asked about a waterproof prosthesis as I feel since we have an above ground pool ( we rent) it would be good therapy and also want to be able to sometimes shower without a chair or possibly even swim in the ocean. Is this possible or do you have to remove it for sea water?
Once my husband returns to work between that and my disability I may lose it my Medicaid and also wonder if that occurs would I qualify for the Barr Foundation as our outgoing bills are so high it will take all of my disability and most likely any pay he gets to pay our bills but on the website I only see that it is covered if you have no other means to pay and they say if I can return to work being on the prosthesis that many hours a day it may only last 3-5 years per prosthesis.
Also I wonder if I could benefit from the ERTL Reconstruction procedure? I was a General Manager for a restaurant when this occured and would like to reurn but it would mean 10 hour days on my prosthesis, maybe with this only time would tell??
Any information that all of you wonderful members here, and you too Dan would be SOOOO appreciated!! Once again sorry for asking so much but I just feel lost and think this is the best place I have seen for correct answers.
Sincerely,
Cheryl
Any individual emails are welcomed to calliecat420@hotmail.com, just please state in the topic replying from Stumps R Us as I am very careful about not opening unknown emails. And thank you again to anyone who is willing to write to me.
Cheryl
Cheryl <calliecat420@hotmail.com>
FL USA - Monday, April 16, 2007 at 13:32:01 (GMT)
Hi...my name is Katie. I'm 21.
I had an elective amputation 12 weeks ago after suffering from CRPS type 2 (RSD) for 11 and a half years.
I have a below the knee amputation but I have an unstable knee and have a knee corset that keeps my knee straight.
It wont be a permanent thing though.
I no longer have pain and the amputation has been a success.
When I was researching before my amputation there was a lot of negative news where amputation just made things worse for a CRPS sufferer. As it has worked for me it would be great to know if there are anymore positive outcomes.
If you have had an amputation to rid yourself of CRPS (RSD) and it worked for you then please contact me.
Katie
Katie <KattieJ85@aol.com>
Somerset, England - Wednesday, April 11, 2007 at 17:33:14 (GMT)
Hi Dan and Fellow Readers.
I am on a weekend pass from our local Rehab unit at the Grey-Bruce Regional Health Centre. It is Easter weekend and it has been snowing for three days.
I was looking for some info on help to get a small ramp made to help me get my wheelchair in and out of our farm house door and I saw this thing that said "Stumps are Us" and I couldn't pass that up.
I had my surgery in Hamilton Ontario at St Joe's on Jan. 30th and was discharged from there after a rehab intro program on Feb. 21st. I came home to a wheelchair and amp board. After a few falls I finally had my first appointment for my Temporary Prosthesis and was put into the rehab program.
I am a week to discharge and I am terrified. I live out in the middle of no where and I will be alone. Well not alone exactly, I have two dogs that keep me busy and normally I would have my cold frames started and I would be thinking about the up coming year with my greenhouse, but not this year.
This all started nine years ago with a simple surgery to correct an old subtaylor and cuboid fusion of my left foot. My post op cast was put on too tightly and when it was removed my foot and leg from the knee down looked like it was living a different life then the rest of my body. It looked like it had been burnt.
I was diagnosed with something called RSD or now referred to as CRPS type 1. I had never heard of such a thing, but I was in an incredible amount of pain for years. I took copious amount of opiates and finally the neurologist at the pain management clinic in London Ont suggested that I take oral methadone.
I asked for a referral to one of the best orthopaedic surgeons in Canada and he and I came to the conclusion that the best course of treatment for me at this stage was an amputation.
I knew I had made the right decision a few short hours after surgery.
I can sure tell the difference between surgical pain and the pain from RSD. I am still taking some pain medication, but not as much as I was. I have been introduced to Lyrica Pregabalin and it has helped tremendously. I take Hydromorphone four times a day to deal with a nerve that has attached itself to something at the left bottom of my stump. We are working on that with hot/cold treatments and aggressive massage that helps.
Anyway, I am just over eight weeks post op and I figure I am doing fine. One day at a time and I don't believe in that old cliché "No pain, No gain".. If you're having legit pain, do something about it!
Take care everyone and I'll keep you posted..
Cheers from Don in Tara Ontario Canada Brydongrdns@netscape.ca
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, April 08, 2007 at 01:02:31 (GMT)
J. Wong-Rolle...
Have your friend make an immediate appointment to see Certified Prosthetist Wayne Koniuk at:
San Francisco Prosthetics
324 Divisadero Street
San Francisco, CA 94117
(415) 861-4146
Wayne Koniuk is Stumps 'R Us certified and recommended Prosthetist because he specializes in A PERFECT FITTING PROSTHETIC DEVICE. Mr Koniuk is my Prosthetist as well.
Good luck!
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Monday, April 02, 2007 at 00:00:46 (GMT)
Hi! I am writing for a friend who had a below the knee amputation. He has had infections, pain on his stump and from his prosthesis. I tried to find resources on the web to help him get a new better fitting or better working prosthesis, but he said he talked to Stumps and the company I found back east isn't a good company. Can you recommend something in the Bay area for him? He has Kaiser, and I know they have a Vallejo facility, but heard it may not be that good. Before the amputation he was very active, and cannot be now-his prosthesis doesn't seem able to help him balance enough, plus it causes him pain. He is the stoic type, and seems to think nothing can be done-but it seems he is taking way too many pain killers, and his weight is up because he cannot be active. He used to hike and backpack and now cannot even walk easily.
I don't know what reasonable expectations are for his situation, but am worried that he is jeopardizing his health because he thinks nothing can be done. Can he get someone to help him get a better prosthesis? I heard his cost about $1500 about 2 years ago-which seems very rudimentary from what I have seen out there.
He has a doctor is SF, but hasn't seen him in a long time, probably since the initial surgery. Thanks
J. Wong-Rolle <wongrolle@hotmail.com>
Vallejo, CA USA - Sunday, April 01, 2007 at 23:58:06 (GMT)
ssnnlee@netzero.net...
Stumps 'R Us Certified Prosthetist Wayne Koniuk suggests that it sounds like a medical, surgical problem and he (or she) should return to his (or her) surgeon for an assessment.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 22, 2007 at 10:41:03 (GMT)
Michael Hawkins,
Being an amputee, I can say one of the best things to help was letting me do things on my own. Yes, it is nice to have people do things for you, but as someone who was always looking for ways to help others, it was sometime frustrating for others to step in before I was even able to try.
Offer to ride along to appointments, but if he is able to drive, let him do it if he wants to.
My wife always insisted I take someone to each of my appointments which were about 45 miles away, but sometimes I just wanted to be alone.
Look up resources, such as Amputee Coalition of America, and let him know where to find help for other issues if he needs it.
Rick
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Wednesday, March 21, 2007 at 17:31:15 (GMT)
My son, Michael 26 years old, became a BK amputee yesterday. The doctors are helpful but what can he expect in the next few months, years?
What can we, as his parents do to help without getting in the way of his recovery/rehab?
What questions should we be asking?
We (Michael, family and friends) are all still coming to grips with what has happened and we're glad he's still alive. Any information will be very helpful.
Michael Hawkins <jejoge05@comcast.net>
Tucson, AZ USA - Wednesday, March 21, 2007 at 01:32:47 (GMT)
Carmen Lopez in Atlanta, GA...
Stumps 'R Us Certified Prosthetist Wayne Koniuk suggests a smaller liner size or an antiperspirant or BOTH.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, March 20, 2007 at 05:56:11 (GMT)
I wear my prosthesis about 16 hours per day 7 days a week. I wanted to know is it normal to get air in your liners after wearing your prosthesis for long periods of time?
I seem to be getting air in my liners after just a couple of hours and find that I have to take it off and clean the liner and my stump and then that works for a couple of more hours. But, then here comes the air again.
Is this normal?
How often to you need to replace your liners?
Any information given will be gladly appreciated.
Carmen Lopez <carmenvitalopez@earthlink.net>
USA - Monday, March 19, 2007 at 13:08:48 (GMT)
ssnnlee@netzero.net in Solano County...
You're in luck. DRIVING SPECIALTIES LIMITED who specialize in hand controls for amputees is located at:
215 Commercial Street
Vallejo, CA 94589
(707) 553-1515
Come see us. We have missed you at the Bowling parties. The next one is in July at the Serra Bowl in Daly City, CA.
The next Stumps 'R Us lunch is Saturday March 24th...11:30 AM at Spenger's Fish Grotto..Schmick Room in Berkeley. Details on page ONE of this web site.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 14, 2007 at 01:09:02 (GMT)
Hey Dan,
I hope you remember me. I attended one of your bowling get-together. At that time, I lost my right leg. I am now a bilateral amuputee. I live in Solano County.
I hope you can provide me with someone who can convert my car to hand controls.
ssnnlee@netzero.net <ssnnlee@netzero.net>
Solano County, CA USA - Wednesday, March 14, 2007 at 01:01:43 (GMT)
Stumps 'R Us Certified Prosthetist Wayne Koniuk Wins The American Academy Of Orthotics & Prosthetics Annual Award For CLINICAL CREATIVITY!
The Clinical Creativity Award will be given to Wayne A. Koniuk, CP. For the past 25 years he has operated the San Francisco Prosthetic-Orthotic Service. He provides amputees highly functional prostheses and has successfully rehabilitated many athletes and competitors.
Presentation of the Clinical Creativity, Research, Honorary Membership, and Clinical Commitment Awards will take place at the Annual Business Meeting, Friday, March 23 at 7:00 am in Golden Gate C.
The Academy’s 2007 Annual Meeting is being held March 21-24 at the
San Francisco Marriott. For complete program details and to register online, please visit the Academy’s Annual Meeting website at www.academyannualmeeting.org.
To Register:
Call the Academy (703) 836-0788 and we’ll register you over the phone.
Fax your Registration Form to (401) 765-6677.
Register online at www.academyannualmeeting.org.
The Academy Annual Meeting –
An Exceptional Education Experience
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, March 09, 2007 at 14:55:22 (GMT)
I live one day at a time and very much try to make each day count as much as possible. I have been an amputee since 9-6-02. I have been thru many injuries that resulted from the original accident that caused my amputation.
At first I was all up, it's ok I am still alive, it was only my foot not my life. My prosthetists, Mark Maguire(Advanced Prosthetics, Omaha, NE.) has been nothing but a tower of strength for me thru my ordeals. He has come to my home, on Saturday, and brought me a new foot and put it on because he was so excited for me to get a foot that had more response. He met me at the hospital when I broke my hip in 5 places, to remove my prosthetic, so my hip would have the least amount of pain. He sent Jeff, a very knowledgeable young prosthetist, with me to Ohio to be there in the surgery room, in Ohio, when I had the ERTL procedure.
I can't praise him and his crew enough.
My point to all this? Life is not fair some times. Being an amputee is NOT easy.
My body is not like any other amputee in the world. I will never be able to do the things I used to do. I will not be able to work the rest of my life.
Point being, have a positive attitude because sometimes that may be all you have to fall back on. Expect the best but be ready to readjust and except your life the way it has to be.
I was told I expected to much, that's why I would get knocked down every time I would find out I was not going to get any better than this. Love your life every day, make it the best you can have. Don't lose your sense of humor and love for life because of some set backs you never saw coming.
I hope every amputee can get back to their lives and do everything they did before. But those who can't, adjust to your new life and enjoy it.
That's all folks!!!!!!!!!! lol lol
Debbie Coonrod <debc328@msn.com>
Council Bluffs, IA USA - Thursday, March 08, 2007 at 16:50:11 (GMT)
Hi there,
I am looking to see if there are any amputees in the Yuba City, CA area? My brother -in- law just lost his leg (about 6 months ago) from below the knee down and I was hoping to find someone that he has something in common with. He doesn't really know anyone in the area. His name is Chris and he's 22 yrs old. He likes fishing and outdoors stuff, and he needs a woman friend in his life too.
If you know of anyone let me know! Thanks!
ps. i heard of you from someone on the amputee treatment website..a guy said you might be able to help
Ellie
Ellen Millhouse <elliekatem@gmail.com>
Yuba City, CA USA - Wednesday, March 07, 2007 at 14:27:55 (GMT)
Tony Barr was one of the most generous, genuinely dedicated, humorous souls I had ever met. It is with sadness and disbelief that I read his obituary today.
Tony Barr was instrumental in changing so many lives including my own positively. His unwavering advocacy for the ERTL Surgical Procedure helped make so many amputee futures bright and for all practical purposes painless.
Tony was both networking collegue and information source. His "A Survivors Guide For The Recent Amputee" was and is the candle that cursed the darkness for so many.
Tony Barr was one of the few that will be missed by so many.
Sleep peacefully dear friend. You earned the rest.
Tony's Obituary follows
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 07, 2007 at 03:48:11 (GMT)
The Amputee Community and Stumps 'R Us lost a great friend today
ANTHONY TALBOT BARR Anthony Talbot Barr, 59, of Boca Raton died peacefully on March 5, 2007.
He was born July 18, 1947, in Chicago, IL. Tony was predeceased by his father, William G. Barr of Joliet, IL; mother, Elinor Talbot Harnett of Ft. Lauderdale; and most recently by his sister, Robin Barr Pellegrino of Boulder City, NV. Surviving Tony are his daughter Lisa (Tim) Russo; granddaughter, Tabitha, grandson, Nick; and great grandson, Timothy all of Troy, NY. He is also survived by his sister, Kathleen (Dave) Barr Kruger, of Lilburn, GA; brother, Michael (Carroll) of Powhatan, VA; and sister, Susan (Jeff) Hellberg of Amarillo, TX. Also surviving Tony are the love of his life and soulmate, Eva Julie Hughes, and his "other mother", Dolores Schneider.
Tony graduated from the University of Tampa with a bachelor of science in 1970 and subsequently started T-Barr, Inc. a commercial real estate company. He was a member of the National Association of Realtors and a longstanding member of the US Polo Association. In addition to his involvement in real estate, Tony's dedication was to The Barr Foundation as both a Board Member and its President, traveling to Third World countries to make people "Whole Again" through The Barr Foundation.
He was a member of the elite group of skydivers who had logged over five hundred jumps, but his passion was polo and his polo ponies.
Friends may call from 2-4 and 6-8 pm on Wednesday, March 7 at Babione Funeral Home (East Chapel), where a funeral service will be held at 7:00 pm.
The family requests that in lieu of flowers, donations be made to The Barr Foundation, 136 NE Olive Way, Boca Raton, FL 33432.
The family and Board of Directors of The Barr Foundation are resolute to continue the work of the Foundation in memory of its founder, William G. Barr, and now its Champion Tony Barr.
Babione Funeral Home is in charge of arrangements, 561-395-8787
To express condolences and/or make donations Visit PalmBeachPost.com/obituaries
Published in The Palm Beach Post on 3/6/2007.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 07, 2007 at 03:42:38 (GMT)
Liz Heywood in Spencer, NY...
Once you make the decision it gets better every day.
Congratulations and welcome back to the world of the living. You will never regret what logic & good sense told you what was the right thing to do.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, March 05, 2007 at 22:06:23 (GMT)
Hi Dan & all--
Thought I'd send an update on my situation.
Last Monday, Feb. 26, I became a brand-new AK amp. This was the culmination of my year of research, appointments and arguments with doctors who advised me to fuse my leg straight, and support and advice from wonderful amputees who contacted me after I posted questions here last November.
I had the surgery Monday, came home on Thursday & I'm doing fine.
It feels like I've finally crashed through a wall into a new stage of my life after deterioration from 30 years of walking with the fused/ankylosed knee I developed as a teenager after untreated osteomyelitis.
The friends & contacts I've found here at Stumps have made all the difference. Electing for amputation seemed like a unique trip until I realized how many have already done it and turned their lives around.
I'm still a work in progress but the absence of my leg feels like a space where my new mobility is about to appear. It's exciting!
Liz Heywood
Spencer NY USA
Liz Heywood <lheywood@localnet.com>
Spencer, NY USA - Monday, March 05, 2007 at 22:00:24 (GMT)
Recently, your website was brought to my attention by Burke Thompson of Oregon. I am wondering if you or any of your readers can help me?
I have read from your guest book and noticed that many of your guests are from the west coast, but thought I'd put a request out anyway.
I am 49 years old and in good health, have been an above-the-knee amputee for 16 years; my weight is appropriate for my height and build, and does not fluctuate. I have a long residual limb, and good insurance, and the motivation and tenacity to get a leg (i.e., I have a lot going for me!) Two years ago I had an ERTL procedure with good results. Since then, I have gone through two prosthetists both of whom I worked with for approximately one year. I am in Maine and both of these prosthetists are in New York. I decided to travel there because of the larger population of people/amputees/prosthetists with experience fitting above-the-knee amputees.
In these clinics I have met some people that have been fit well, others that haven't been; unfortunately, I fall into the latter category.
I have devoted at least every other week to traveling to New York to make myself available for fittings, etc. The second prosthetist got me up and walking and billed my insurance. With the increased walking, I gained muscle in my upper thigh and at that point needed more adjustments, had them done, but from that point the leg started hurting. At each fitting the leg fit became progressively worse than the last and deteriorated to the point that I am no longer wearing the leg because it hurts too much to wear. (Shock pains to the residual limb which I hadn't experienced since before my ERTL procedure.
I decided that I cannot tolerate this type of torture.) I am worn out from the travel (a six- to seven-hour drive each way), and my prosthetist has lost interest and time as he only works two to three days per week.
What I am looking for in a new prosthetist is:
1.) One who is located within a two-hour drive of Portland, Maine: Could be Boston, New Hampshire, etc.
2.) Qualities: Passionate about what he/she is doing Compassionate. Has fit many above-the-knee amputees and able to maintain the fit.
3.) Personality: Must be Kind, Respectful, Good listener, Good comprehension
Any help/tips/recommendations that anyone can give me would be greatly appreciated!!
Sincerely,
Meg Wolff
Author of Becoming Whole, The Story of My Complete Recovery from Breast Cancer
www.megwolff.com
www.macrobreastcancersurvivors.com
Meg Wolff <megwolff7@aol.com>
ME USA - Friday, February 23, 2007 at 15:02:08 (GMT)
Dear Holly
Contact Tony Barr at the Barr Foundation in Boca Raon, Florida t-barr@t-barr.com He may be able to help.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 21, 2007 at 19:40:54 (GMT)
I just found your website and I am grasping at straws here. I have a 22 year old stepson who served in Iraq during the "first wave". When he returned he and his buddies all bought dirt bikes. He had an accident on the dirt bike while still in the military three years ago.
He had his foot rebuilt at a military facility.
About a month ago, an infection ran through the foot and there was no choice but to amputate it below the knee.
Unfortunately, he was a mechanic intern at a dealership and his insurance does not kick in until March 1, 2007.
The military "lost" his paperwork and due to some other issues they may not consider themselves financially responsible. He does have a military attorney, but it could be years before he knows anything about his "case".
He now has 30,000 dollars in medical bills in Idaho Falls. We are following up with the hospital's aid reccomendations but those are not looking good as well. In 6 months he is going to need a lot of cash for his prosthetic leg.
I guess I am wondering if there is an agency anywhere that provides any type of aid for individuals who need help purchasing a prosthetic?
I appreciate your time and efforts so much. Your website is very informative. I myself wrecked my Harley five years ago, luckily I was not injured. I consider myself very lucky.
Thanks so much. God bless you for helping others
Holly
Holly Gederos <hgederos@mt.gov>
USA - Wednesday, February 21, 2007 at 19:38:26 (GMT)
Jeanne Morris...
He may be nice. He may be an amputee BUT your Certified Prosthetist sounds like an incompetant moron.
Find another CERTIFIED PROSTHETIST in your area and have him (or her) fit your socket properly.
There is no reason why after this much time you are not walking properly and WITHOUT PAIN!
In what city in the USA are you? Perhaps I can suggest a proper vendor.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, February 19, 2007 at 05:22:50 (GMT)
I'm Jeanne morris and I can't figure out why my prosthetist can't make my leg comfortable to walk in? He is an amputee. I trust him. But the end of my stump is so sensitive and I get such pain walking.
I'm only 47. I want to be active. Anybody have any Ideas?
This is my third leg.
Thanks
Jeanne
Jeanne Morris <jamiejeanne@sbcglobal.net>
USA - Monday, February 19, 2007 at 05:16:33 (GMT)
I haven't posted for a while but have some [personal] good news to share.
I have suffered with constant pain, occassionally chronic, since a road traffic accident in 1981 left me with a paralysed arm [brachial plexus lesion] and elected LAE amputation in 1991.
In the intervening 25 years I have attended various pain clinics and tried various pain treatments from TNS device to copious amounts of whisky. I attended a pain clinic in November 2006 and was seen by a Mr Thorpe, Anaesthetist and Pain Management Consultant who prescribed a mixture of Amatryptil [mild antidepressant] and Pregabalin [neuopathic pain suppresant].
I've been using it ever since...
The occassional shooting pains still occur though less frequently but the constant background pain and frequent thumps are on the wane - it's amazing! I used to suffer very badly during the night - every time I turned over it would cause a massive bout of unbearable pain - not any more, and the drugs have a side effect of helping me sleep significantly better than I have in the past 25 years.
The Anaesthetist told me that only 2% of people who suffer constant pain following "neurological trauma" will suffer with it for as long as I have.... I guess that makes me special :O)
If anybody wants to know the doses please contact me and I'll be happy to share them.
Regards, Barry
Barry Procter
Henfield, Brighton, UK
email: barry.procter@uk.ibm.com
Barry Procter <barry.procter@uk.ibm.com>
Henfield, Brighton United Kingdom - Thursday, February 15, 2007 at 21:13:47 (GMT)
Ron,
I have had a walking boot since day one of the infection. It did not help at all until I could walk without it. Now, I can walk in the boot with less pain, but it still hurts pretty bad. When I first get up from sitting for awhile it really hurts (almost fall down from pain) with or without the boot. It hurts due to weight bearing and motion.
As far as fusion goes....
1. If it takes away the pain seems like a big if.
2. If the infection does not come back seems like a big if (from the original accident the bone is not smooth and straight, but has lots of irregulairities and hidey-holes for infection).
3. If it can be useable again is iffy (I have pretty high standards and expectations for usefulness--above all I want something that works reliably without limitations). 4. If this thing is going to plague from here on to heaven and is going to result in bka anyway, then I would rather just get on with life.
Another question? Since I have already been laid up for 4 months with this thing and now working in extreme pain, what can I expect for healing time with bka and Ertl?
I am healthy, in shape, not overweight and have a "git 'er done" attitude. Is it possible to walk out of the hospital after surgery?
My understanding is that I will be fitted with a prosthetic while I am still under anesthesia.
By the way, this won't be the first time I have given up a body part for life, libery, and the pursuit of happiness. Four and a half years ago I had a colonectomy with "J" pouch performed due to Chronic Ulcerative Colitis, and I couldn't be happier with the result.
The info and advice has been invaluable. Thanks,
Jim in NV
Jim Stockman <jimestockman@yahoo.com>
USA - Friday, February 09, 2007 at 11:40:37 (GMT)
Jim (in NV)
Like Dan, I have had the Ertl Procedure and have been quite happy with it. However, each person must make the decision themself, with proper information leading up to the decision.
(You can read my story on the ErtlReconstruction.com website if you like)
My ankle man told me that when I was in my cam-walker (walking boot), if I still had the pain, a fusion most likely wouldn't help. The fusion is to 'lock the ankle in place". The cam-walker is designed to do the same thing. So, if in the boot I had tons of pain, he didn't see that fusion would really help me.
(of course, this was told to me after a fusion surgery, and we were discussing another fusion, since I was 'breaking down' the current fusion.
Have you completely immobilized your ankle and seen if that removes/reduces the pain? If not, take a few days/weeks to test that out. At least you will have the knowledge you tried and found out the the fusion really isn't an option.
This is coming from the webmaster of ErtlRecosntruction.com. While I am obviously a HUGE advocate of the procedure, all options should be investigated before taking that final step (no pun intended)
Ron King
Ron King <ron.king@gmail.com>
USA - Thursday, February 08, 2007 at 16:16:45 (GMT)
Jim in Elko, Nevada...
In my opinion you should have a below the knee amputation using the ERTL Surgical Procedure. The ERTL Procedure is described with a link to the ERTL website on page one of the Stumps 'R Us web site www.stumps.org I recommend the ERTL because it is the only one I know of that creates a bone bridge at the stump end for strength and buries the nerves in soft tissue that eliminates or greatly reduces any post op pain.
Good luck!
It was more than 30 years ago that I had the same decision to make. I never regretted it...NEVER.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 07, 2007 at 04:57:06 (GMT)
Dan and others,
My name is Jim Stockman and live in Elko, NV. I fell of a 38' cliff on 7/1/97 and shattered my lower leg/ankle. It is was nearly amputated then but they were able to reconstruct it over the course of three surgeries.
I had constant, though dull, pain and nearly debilitating pain off and on until 10/04 when I had half the hardware removed (the other half was buried under bone).
What a difference! No pain to speak of since then until a root canal w/out antibiotics and developed a staph infection 10/06. Surgery to clear up the infection and remove rest of hardware, but now have SEVERE pain when walking and aching at rest. I was off work for 3 and a half months because I couldn't walk (work as a heavy equipment mechanic) and now back at work but can barely walk.
Specialist says ankle fusion or bka is the answer, but recommends fusion. First accident I had compartment syndrome resulting in nerve damage, circulatory damage, and skin graft. My foot is not perfect, but maybe good. Toes do not work well.
My question: What (in your opinion) will give me back my quality of life, activity level, and as pain free as possible? I ride dirt bikes, play sports, and chase my young kids and lovely wife, as well as have an active, on feet all day job. What would you choose? I have always leaned toward bka ever since the accident because I was so limited with my messed up leg. I am very interested to get your point of view (people without problems seem to think keeping the leg at all cost is the best).
Thanks for your site and the info available.
Jim in NV
Jim Stockman <jimestockman@yahoo.com>
Elko, NV USA - Wednesday, February 07, 2007 at 04:54:46 (GMT)
Hi,
I would just like to pass on a link to a wonderful Austalian company making stump socks that are orderable over the net and shipped worldwide
I know many amputees find it hard to find a source of quality socks at reasonable prices.
Love your site, keep up the excellent work and know we all appreciate it.
http://www.hellersocks.com/index.html
Barry Porter,
Bathurst, NSW,
Australia.
pondo666@internode.on.net
Barry Porter <pondo666@internode.on.net >
Bathurst, NSW, Australia - Friday, February 02, 2007 at 16:48:39 (GMT)
I saw my doctor today and she seems to think it was (the bump burst the other day like a big pimple) a Baker's Cyst .
Nothing to worry much about.
I may have torn some cartilage or something during my accident that was not diagnosed.
Robert Webster <Robert.J.Webster@navy.mil>
USA - Wednesday, January 31, 2007 at 20:52:34 (GMT)
Rob Webster...
Possibly pimple, ingrown hair or onset of blister check the liner you are using .....
Does the crease in the liner at the backside of the knee where it bends match up to the bump on the skin????? If so you might want to take steps in keeping it cleaner exfoliated and a bit dryer i.e. less sweat and possibly out of the leg for a few days.
Have a good one. Ride safe
"Two Tires Downside"
Joe Kennedy
RBKA (Rider)
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Monday, January 29, 2007 at 16:30:54 (GMT)
Your question was a new one for me. I don't have an answer.
I would suggest you ask your Certified Prosthetist if the socket fit might have something to do with the above socket swelling. Other than that your Doctor should have an idea and hopefully a solution.
Thank you for responding positively to others in our GUESTBOOK.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 26, 2007 at 14:04:58 (GMT)
I am a 36 year old L/BK due to a motorcycle accident 18 months ago. Doing well overall and am even back on the motorcycle after we (the bike and I) got fixed.
It actually took the bike a while longer to get fixed/modified.
Anyway, my question is this;
I like my socket and Renegade foot however I have felt a bump forming behind my left knee a little above the socket. I can only really feel it when my leg is straight. It doesn’t hurt but it can be uncomfortable at times. It is larger now than it was a few months ago.
I am going to be seeing my doctor next week and was wondering if you had any ideas about it?
Thanks for the great web-site by the way. I have contacted many people on it and hope to help others as well.
Riding on,
Rob
HDRider
Rob Webster <robwebster@comcast.net>
USA - Friday, January 26, 2007 at 13:56:38 (GMT)
Hi,
I need to call someone who can convert the braking system on my motorhome.
I do not want hand brakes. I am looking for someone who can realign the brake to the left side of the steering column.
Do you know anyone who can do that?
Thanks for your help.
Frank Billeci <fuzyfrank@aol.com>
USA - Tuesday, January 16, 2007 at 02:22:16 (GMT)
Roberto Donati in Los Angeles, CA...
The best place to inquire would be through the
ACA (the Amputee Coalition of America). You can scan their Web site at:
http://www.amputee-coalition.org
Or E-mail them directly at:
editor@amputee-coalition.org
Or call them TOLL FREE at:
(888) 267-5669
The ACA has the largest data base of Amputee Support Groups in the USA that I know of.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 16, 2007 at 00:42:23 (GMT)
Dear Mr. Sorkin,
I found your website thru Google.
I am a marraige and family therapist in Los Angeles and have a few patients that have lost fingers, hands, arms etc. I am having a difficult time finding a support group for them in the LA area. I was wondering if you knew of a website or links or phone numbers I could call, that would guide me and my clients in the right direction.
Thank you so much.
Roberto Donati M.A. MFT <robertodonati@gmail.com>
Los Angeles, CA USA - Tuesday, January 16, 2007 at 00:36:48 (GMT)
Hi! My name is Fran and I am a 44 year old bilateral bk amputee(second amputation just happened this past December) and a single mom of a beautiful five year old daughter named Sadie. We live in Lynnwood, Washington in the basement apartment of my sister and brother-in law's house. When I lost my first leg, the recovery time for me was a snap! I was back at work 2 weeks after my surgery and walking upright in 5 weeks.
I don't remember being depressed or sad or frustrated back then. This time around feels very different to me, maybe it's because I have now lost both my legs, and you know; once they are gone, they are really and truly gone. I am depressed and sad and very frustrated but mostly scared. It's the waiting that is making me crazy, waiting for my limb to heal so I can start the process for a new prosthesis, the hours seem like days, and the days seem like weeks. Being stuck in this wheelchair doesn't help much either; can't drive yet, can't pull up my pants after using the bathroom without transferring from my chair to my bed to do it. I know all of this is transient but the waiting is crazy making. And then, Sanjay(my prosthetist) calls me to tell me this:
My insurance company (AETNA) has decided in all of their infinite wisdom to deny my evac pump system on my right leg because they deem it experimental/investigational. The frustration for me is immense because they covered my first vacuum pump prosthesis back in 2005 so why now are they saying the pump system is experimental, and to top it off, MEDICARE does cover the vacuum pump systems, the particular device I have(EVAC) has it's very own code with Medicare and they do consider it a covered device. It is beyond me why insurance companies play god. I mean the letter they sent my prosthetist was ridiculous: "This is your final appeal, do not write to us again regarding this, blah, blah, blah!!!!!" I despise insurance companies, and right now I am paying a fortune for my COBRA premium and realize that it is costing me and the agency I work for a fortune for health insurance and each year they cut more and more and decrease benefits but raise the premiums, AGHHH!!!!
Technically my prosthetist cannot hold me responsible given their contract, etc but now they are out over 5 grand and now with this second amputation I am need of yet another prosthesis and the vacuum pump has been the best set up for me. It has allowed me to raise my daughter, continue living the life I was accustomed to prior to amputation, etc and I am at a loss as to what to do from this point on...
So; I ran across this site while searching for help online and thought this might be a good place to begin...
I am wondering if there are other folks who have had similar problems with their insurance companies and if so would you be willing to share your experiences with me and maybe impart some of your wisdom in my direction. It's wrong of AETNA to do this, and they need to be stopped somehow!!!!
Thanks so much for listening. It has been a rough couple of months and now with this news, it only adds to my depression and anxiety.
Peace Always,
Fran Olla-McCabe
19430 70th Place W.
Lynnwood, Washington USA
F.OllaMcCabe@hotmail.com
fran olla-mccabe <f.ollamccabe@hotmail.com>
Lynnwood, WA USA - Monday, January 15, 2007 at 08:53:13 (GMT)
Nikki Thompson in Snohomish, WA...
The first place I would try to borrow used or new prosthetic devices would be from your local Certified Prosthetist (check the yellow pages for Prosthetic devices OR Certified Prosthetist).
Next I would contact the Otto Bock Company (www.ottobock.com) and state your case.
You have a WONDERFUL idea for an 8 minute descriptive presentation.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 12, 2007 at 03:33:55 (GMT)
I am a student at Snohomish High School. I am preparing to compete at the Washington District and State Debate Finals giving an expository speech.
Expository is a competitive speech event in which students give an eight minute explanation of a topic they feel is important.
I am giving my speech on the history and future of prosthetics and am in need of some visual aids. The Stumps 'R Us site intrigued me and I think you may be just the person who might know where I could find some prosthetic devices to enhance my speech.
They could be old or broken as long as they are representative of function they are supposed to perform.
I would really appreciate your help in finding these treasures.
Thank you!
Nikki Thompson <u-r-enchanted@comcast.net>
Snohomish, WA USA - Friday, January 12, 2007 at 03:27:21 (GMT)
Next week on January 18th, I will truly CELEBRATE the six month milestone of my Ertl Recon surgery. (I had the surgery at the Oklahoma University Medical Center with Dr. William Ertl.)
I will try to update what has happened at a later time, and give you a synopsis that may be on the Ertl website/patient testimonial.
I did finally get into a definitive prosthesis on Dec 11th (I went through two check sockets--from Sept 21 to Dec 11th) and have had some challenges with pain, but the last week, things have been improving. I did go back to work on Sept 12 full time while still on crutches, and have been working full time since then.
I'm not "jumping off jeeps" yet (from the Navy SEALS video), but can stand on my prosthesis--full weight bearing with little pain. I truly believe I am where I "need to be" at this time!
Thanks for everything you have done to promote the Ertl procedure.
Dave Paschold
402-423-0308 office
402-239-6947 cellular
dlpaschold@agriliance.com
Paschold, Dave <dlpaschold@agriliance.com>
USA - Thursday, January 11, 2007 at 14:30:02 (GMT)
It has been a long time since I have visited the site, but, I am back.
I recently had a new socket made and after 6 years of the pin locking system I was talked into trying the Tech Harmony system.
Well, I tried the tech model, and one from genesis, then my leg guy mentioned there was a model out that ran by battery that really kept the leg on even when sitting for long periods of time. Whenever the vacuum gets low, the pump sucks the air out.
So far I am a happy camper.
It has been around 4 months and I am still happy. Actually kind of even jogged a bit, something I could not do before. I usually go from 5:30 AM to 6:30 PM daily at work and do not take my leg off to adjust at until I get home from work.
I no longer never have to stop, and readjust because the leg has slipped during the day from all the walking I do. That is great considering I am plant manager who walks the production floor all day. I used to have to stop at least once every 3 hrs...now, nothing.
Also so far no big deal in heat either as I was in Vegas and Florida within the past 4 weeks. I can go on and on, but won't. Need to get to work.
If anyone has any questions, ask away, either private (joebach3@hotmail.com) or on this forum.
JJ Bach <jjbach@aol.com >
USA - Wednesday, January 10, 2007 at 17:22:05 (GMT)
Hello,
My name is Tina Wolfgram. My Dad Timothy Canfield just recentely got his left arm amputated and is having severe phqntom pain. He has no desire to eat and is losing a lot of weight.
Is there someone out there that my dad can talk to that has gone thru the phantom pain and can give him some helpful things he can do to releve all the pain my dad is in 24-7
Thank you to all who may reply with much needed help.
tina wolfgram <tchump333@peoplepc.com >
USA - Monday, January 08, 2007 at 20:53:15 (GMT)
Kevin O'Reilly...
I'm not sure what kind of prosthetic you have but but if you are ripping thru pants I would assume you either have the lock and pin system or the knee strap.
One suggestion is this. I have a suspension type prosthesis and use the Otto Boch sleeves. In these sleeves they send what is called a gaiter which is suposed to prolong the use and wear and tear of the sleeve by covering it with a band. I don't use them as they are a pain in the ass to use but if you could somehow cut an old stump sock or an old sleeve or even your wife's old nylon to go over the area that's rubbing it should prolong the pant wear and tear and rubbing in that area.
Suit pants are especially prone for damage.
I hope this helps.
Joe Kennedy <joseph.kennedy72@verizon.net>
Lutz, FL USA - Sunday, January 07, 2007 at 14:32:40 (GMT)
Randy,
Contact Tony Barr of the Barr Foundation in Boca Raton, FL. He & I would both recommend the ERTL Procedure for you because it is the ONLY surgical procedure that properly prepares the residual limb for a comfortable, mostly pain free prosthetic device.
Tony's amputation is exactly what yours will be.
Tony's Email address is t-barr@t-barr.com
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, January 03, 2007 at 19:15:46 (GMT)
My doctor just told me I should consider a reconstructive amputation of my ankle/lower leg.
Shocking news. I would like to gather all info, so I wanted to talk to someone who has gone before me! Do you have a refferal I might talk to?
Thank you.
Randy Ziraldo <rziraldo@yahoo.com>
USA - Wednesday, January 03, 2007 at 19:12:10 (GMT)
I need some help from the Stumps 'R Us.
A brief intro. My name is Sal Becker and I am 50 yr old bilateral ak of 3 yrs. (Damn almost sounds like I am in AA).
Due to fighting MRSA for a year and half I am just now getting to the prosthetics. Just got into basic knees, up to about 200 feet at a shot without assuming the confessional position.
The help I need is that I want the computerized knees.
Yes 2, one for each leg.
Of course the Insurance company denied them as being investigational and experimental. As far as a bilateral AK using them, unfortunately there is little to dispute this.
So our plan of attack is to prove that bc/bs has paid for the knee in the past either uni or bilateral. With enough examples there, with there being a L number under Medicare (medicare doesn't pay for or assign codes to experimental or investigational equipment) and with what is being done at Walter Reed Hospital using the c-leg for both unilateral and bilateral amps, we think we can beat the denial.
So anyone who has had bc/bs (blue cross/blue shield) pay for their computerized knee, if you could please contact me and allow us to use you as an example, it would be really great. If you had Empire bc/bs pay it would even be better.
At the end of the run, successful or not, all information obtained will be posted to a website for public use and hopefully make it easier for the next person.
Thank you.
God Bless and Happy New Year to all.
Sal Becker <salbecker@cox.net>
Phoenix, AZ USA - Tuesday, January 02, 2007 at 19:45:57 (GMT)
My daughter would like to circulate her newsletter for Young Amputees and your Stumps 'R Us readers.
If you would like to receive “Young Amputees in Action” (it is a PDF file in color)Email me at:
jmjotters6@yahoo.com
You can write or call at:
2437 Baker Rd.
Modesto, CA 95358
(209) 572-5136
Thank you!
Mary-Lynn Ott <jmjfarmgirl@clearwire.net>
Modesto, CA USA - Tuesday, January 02, 2007 at 01:11:48 (GMT)
Kevin...wherever you are,
To avoid the worn pants problem I wear sweats most of the time. The only time I wear conventional trousers would be to attend a formal occasion.
In the spring and summer I wear shorts.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, December 19, 2006 at 14:35:05 (GMT)
I am a BK and have a question. I am tired of replacing pants because the edge of the prosthesis is rubbing against the knee of pants causing holes in the knee portion of pants. Does anyone have any info on how to correct this?
Love your site...keep up the good work!
Kevin O'Reilly <kevino@iglou.com>
USA - Tuesday, December 19, 2006 at 14:28:01 (GMT)
Lisa White in Perth, Australia
Don Scheiman in Sunnyvale, CA USA can solve your exercise problem...easily. Contact him at:
dscheima@sbcglobal.net
Don works with upper arm amputees and bi-lateral amputees with extraordinary success.
What he will do is to coach you through his exercise methods using easily affordable devices you can use at home.
I just got off the phone with Don explaining your problem so he is expecting your Email.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, December 17, 2006 at 20:01:42 (GMT)
Hi,
I am a 31 year old bilateral above knee amputee, for the last 7 years. I am absolutely lazy when it comes to exercise, and have a sit-down full time job.
I have gained nearly 8kg in weight since losing my legs, and I haven't even attempted pregnancy yet!!
Walking was my favourite exercise and I really miss it.
I am seeking advice from other non-exercise amputees as to what physical activity ideas helped for them. I found any exercise with my legs on to be unreliable, as I have very problematic stumps and tend to rely on them to get me through the working day - so my spare time is in the wheelchair.
Swimming seems to work, but finding the time doesn't. Some say swimming before work, not after...but I find my stumps are too fragile (skin grafts) to handle my legs being put straight on afterwards.
Help!
Smugly married and getting plumper by the year....
Lisa E. White <lisaw129@yahoo.com.au>
Perth, Auistralia - Sunday, December 17, 2006 at 15:39:07 (GMT)
My name is Stephen Reynolds and I just came across the Stumps' website.
I'm a new LBK.
I wish I had found your site sooner; it's better than the ones I've been on previously.
Thanks for your time.
By the way, if anyone needs a good prosthetist up here, south of Seattle, just let me know. I found a great one that REALLY listens & REALLY cares.
Best Regards,
Stephen Reynolds
LBKA 9/06
Stephen Reynolds <gracedandforgiven@yahoo.com>
Federal Way, WA USA - Sunday, December 17, 2006 at 01:04:09 (GMT)
Hello,
Please allow me to introduce myself. I am an above knee amputee from Vancouver Canada. I lost my left leg as a result of a motorcycle accident in 1974.
As a former paralymic swimmer and skier, I created an amputee resource website at www.amputee.ca. My website is included in the Amputee Coalition Links of Interest Section here:
http://www.amputee-coalition.org/links/nllic_links.asp?companytype=General%20Information
My website is also featured at the following international sites of interest to amputees:
http://talbronstein.org/archive/2004_12_larry_gardner.htm
http://www.amputee-online.com/ampucast/gardner/larry_gardner.html
http://www.ossur.com/template110.asp?PageID=255&newsid=865&Tpl=0
I have experienced phantom pain for many years, and I have written an article on the use of Farabloc for treatment of my pain, which has been overwhelming at times. Here are links to the articles:
http://www.amputee.ca/PhantomPainMain.htm
http://rehabilitation.medicalengineer.co.uk/Dealing+with+Amputee+Phantom+Pain.php?page=1
My experience with Farabloc has been very positive. Please let me know if any of you have had and experience with Farabloc for amputee phantom pain relief.
You can visit the Farabloc website at www.farabloc.com. Farabloc has been the subject of many years of pain research and is proven effective at relieving phantom pain. You can view the studies at their website.
I hope the Farabloc limb covers can help others like it has helped me.
Please let me know if you have any questions about Farabloc. I hope to hear from you.
Regards,
Larry
Larry Gardner <larry@mrwebsite.ca>
Vancouver, Canada - Sunday, December 17, 2006 at 00:52:04 (GMT)
Dear fellow amputees,
I am a double bk amputee living in Rochester, NY. I have been a member of the US Disabled Sailing Team since 1998. I had the good fortune of representing the USA in the Sydney 2000 Paralympic games. I am currently sailing with my friend David Schroeder in Miami, FL. David is an English professor at Miami Dade College, a C 5-6 quadriplegic, a former national and world record holder in wheelchair track and marathon, and member of the US Disabled Sailing Team five times.
We are looking for an athletic, lower extremity amputee, that would like to tryout for a team
position in our Paralympic sailing campaign to represent the USA in Beijing, China in 2008.
If you are (or know of) an athlete that is either a single bk amputee, double bk amputee, or single ak amputee; who accepts their disability, and wants to compete at a world class level, enjoys being on the water, and is willing and able to undergo intensive training in Miami, we are interested to talking with you.
If you are the person I've described above... please contact me.
Keith M. Burhans, Rochester, NY USA KMBNOFEET@aol.com
Want verification? GOOGLE Keith Burhans Sailing
Keith M. Burhans <KMBNOFEET@aol.com>
Rochester, NY USA - Tuesday, December 12, 2006 at 03:44:31 (GMT)
My daughter Ella is almost 3. Ella was born with fibular hemi melia and her R foot was amputated when she was 9 months old.
She wears a prosthetic and does very well.
I gave her a hockey stick and a plastic golf ball to play with. She is swinging both L and R but seems to be more accurate swinging L. She is R handed.
So does that mean she will be Dominant R footed (her prosthetic leg) or L dominant?
If anyone knows the question to this answer please contact me.
Thank you for your time.
I got her R handed golf clubs for Christmas wouldn't you know. Didn't think about that!
Sue Rodriguez <suezrod@msn.com>
USA - Tuesday, December 05, 2006 at 17:57:39 (GMT)
Hello, everyone!
Well, I fly off to Oklahoma City for my ERTL surgery tomorrow. I just want to let you know how much I've appreciated your support and kindness. I feel really positive about this surgery and strongly feel that this is my best option for the best possible outcome.
I'll have appointments with the doctor and at the hospital on Wednesday (12/6), then will have the surgery first thing in the morning on Thursday. I'll be in the the hospital 3-5 days, then in the hotel to recuperate before my return on the 14th.
If you're interested in learning about the surgery you can go to www.ertlreconstruction.com. If you click on the "Ertl Pages" tab and then on "Ertl Amputees", you'll be able to read about several people who have had the procedure.
Again, thanks for all of the support - it's meant so much to me.
Sincerely,
Tanya
Tanya McCabe <dangergirltm@hotmail.com>
Portland, OR USA - Tuesday, December 05, 2006 at 13:42:16 (GMT)
Am I glad I found you!
My name is Fred Schmerling, an 80 year old above-the-knee amputee. I live in Wyckoff, NJ and belong to the Amputee Support Group at Kessler Institute in Saddle Brook, NJ.
It's been about 2 years since I've been without my left leg. I was operated on for a simple knee replacement and developed a Staph infection in the hospital which could not be gotten rid of.
The end result was amputation.
I'm living at home with my wonderful wife who takes real good care of me.
I was a commercial artist all my life and now I've fallen in love with computers and love what they can do.
With my digital camera, I make greeting cards for friends to show I'm feeling good and I surprized myself with all the terrific ideas I came up with.
Hoping to hear from you...If anyone is interested I can send tham copies of my work.
Fred Schmerling <Uglysoto@aol.com >
Wyckoff, NJ USA - Tuesday, November 28, 2006 at 22:06:27 (GMT)
Sadieei Brown...
First off you are not a cripple in anybody's eyes. Each and everyone of us amputees whether we were born with it or had to have it done have gotten on with our lives. So in saying you are just physically handicapped in some slight way.
To me a cripple is a person that has to have 24/7 care and is unable to help him or her self.
I am a bilaterial BKA (below the knee amputee). I lost them in 2002, and I am back doing about 95% of what I was doing before I lost them.
Jack Pickerd <sparksjwp60@cox.net>
Jacksonville, TX USA - Friday, November 24, 2006 at 16:26:54 (GMT)
Jess in Saskatoon, Saskatchewan, Canada...
Thank you and a Happy Thanksgiving to you and yours.
Us cheerful cripples have to do what we can to pass on the knowledge that what has happened to us is just not that big a deal.
I take a lot of my inspiration from Stumps 'R Us Athletic Director Alan Fisk. Alan is a QUADRUPLE Amputee...no arms...no legs...yet a more cheerful, optimistic young man you would be hard pressed to find anywhere.
Alan is a Career Counselor at San Francisco State University where he inspires others every day.
It just occured to me that Thanksgiving is not one of your Canadian holidays. I stand corrected.
Merry Christmas & a Jolly New Year!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, November 24, 2006 at 16:02:06 (GMT)
Hiya Dan,
I stumble upon your site every now and then and I figured I'd let you know that your sense of humor always makes me chuckle.
I'll blow a little of that sunshine now to reaffirm to you that you're doing a wonderful thing here with Stumps R Us. I'm another one of those two wheeled statistics, RBK back in 1999, and life is great.
Keep it up Dan!
Jess <mini-mojo@hotmail.com>
Saskatoon, Saskatchewan, Canada - Friday, November 24, 2006 at 15:50:58 (GMT)
i just came across stumps R Us .. was hoping you would post this for me
I am a born cripple, upper body, BE left arm .. if thats the correct term. if not .. i have a left arm shoulder to wrist .. no hand ...see i don t hang with the medicals, but am trying to find out if there is a name for this state of affairs .. dont get me wrong i have little to no issues with my crip stauts in my world, on my terms but i am trying to find it for a reason ... i was born in the late 1960s, its not thalidomide ..
if you want to know more ask away ... i seem to recall it started with M ... but i know nothing else ...
Sadieei Brown <sadieeib@hotmail.com>
London, England - Wednesday, November 22, 2006 at 22:32:35 (GMT)
I became a right aka in may 05 after two years of pain, hobbling about on a crushed leg from a drunk driver turning in front of my motorcycle.
Anyway, the internet is new to me and I,m browsing for sites about amputee,s, and this one seem,s interesting. So maybe I can make some new friends and get some information from experienced aka,s.
Thanks
Steven Pennington <scottp@webound.com>
Conway, MO USA - Tuesday, November 14, 2006 at 15:59:43 (GMT)
This Guestbook is a lifeline for me. I'm a 45 year old divorced mother of 2, and I'm moving towards an elective AK amputation for the same reason I've heard over and over here: to get on with my life. I live in a small town in upstate New York south of Ithaca.
Thirty-one years ago I developed chronic osteomyelitis, and because of my parents' religion (Christian Science) I had no medical treatment. I spent ten months without getting out of bed while the infection spread and drained from my shin to mid-thigh. My knee joint was destroyed and eventually fused itself. After six months in a wheelchair and eighteen months on crutches I was able to walk on my leg which fused at about eighty degrees. More importantly I was able to ride my horses, and this was what got me through years of depression & PTSD.
After twenty years I broke free from my religious mindset and saw a specialist about my knee. In the meantime I'd been extremely active training horses, riding at a racetrack and working on a dairy farm. The doctor said all that could be done was to fuse my leg straight. That was a no-brainer for me--I already HAD a fused leg and I was strong & busy so I put the question on hold. This was in 1995.
Well, this year my body fell apart--my "good" knee is arthritic, my left ankle very deteriorated and painful and I've lost a lot of strength and flexibility. I can barely walk and can't stand still at all. The orthopedic head at Buffalo General's teaching hospital said my fused (ankylosed) knee is exceptionally rare and difficult and can't be replaced. (He gave the operation a 5% chance of a good outcome, 30% chance of a fair outcome.) He advised me (like two other doctors I saw) to have my leg fused straight & eventually fuse the ankle as well.
I've been researching AK amputation and talking to a prosthetist to get all the information I can. My hope is that amputation would give me the chance to continue to ride, walk, and x-c ski and maybe even start bicycling again. It seems to me the doctors project their own fear of losing a limb & want to save my leg at all costs. I realize saving limbs is their business, but I've HAD a fused leg for 30 years (in a bent position no doctor in his right mind would have approved) and it has not been easy and now it's wrecking my body.
I have an upcoming appointment with a vascular surgeon (in January) to see if he'll do the surgery. Have any of you folks had to lobby this hard for amputation? Are doctors really this ignorant of the positive potential? It's a weird position to find myself in--I feel as though I'm chewing off my leg to get out of a trap. The more I educate myself about amputation, the more calm and relief I feel, and I know my decision is mostly made already. My kids & friends are very supportive but it's hard arguing my case with doctors! I just want to end the pain and be able to MOVE.
Anyone with thoughts on this, please respond! Thanks so much for being there to hear me.
Dan--this is a great site you have.
"Life is either a daring adventure or nothing at all. Security is mostly a superstition. It does not exist in nature."--Helen Keller
Liz Heywood <lheywood@localnet.com>
Spencer, NY USA - Thursday, November 09, 2006 at 23:37:27 (GMT)
Dennis Brown in Stone Mountain, GA
The BB-5500 Bidet Has The Touch Pad Control Module you are looking for
http://sanicare.com/bb-500.html
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, November 09, 2006 at 00:22:06 (GMT)
Dear Fern,
5'4" and 115 lbs is a small person and the Harmony by Otto Bock would be so heavy it would feel like an anchor. I have been told the active vacuum is so great that people do not complain about the weight.
I do not really believe that.
I get the same result with a expulsion valve allowing the natural piston in the socket act to expel air until the pressure is equalized and all motion is gone.
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
San Francisco, CA USA - Wednesday, November 08, 2006 at 14:34:41 (GMT)
Researchers at the University of Toronto and around the world want to know about your experiences with upper limb absence. This anonymous survey will ask about your lifestyle and experiences with limb absence, your healthcare experiences, and your views on upper limb prostheses. By filling it out, you will help us understand what you want (or don't want) in your future healthcare and/or prostheses. You will contribute to important research and have the chance to share your experiences and opinions. Plus, you could win a great prize valued at $250!
If you have already completed our survey, thank you for your time and participation! If you would like to complete the survey, it can be found online at:
http://www.prismlab.org/survey.htm
The survey takes about 20 to 30 minutes to complete and is available in English, Spanish, French and Dutch. We would love to hear from you and will be sure to communicate the opinions expressed to healthcare providers, prosthesis designers and of course, our participants worldwide through conferences, journals, and public reports.
Please feel free to contact me if you would like more information about this survey. Thank you!
Sincerely,
Elaine Biddiss, Survey Coordinator
PRISM Lab
Bloorview Kids Rehab, 150 Kilgour Road, Toronto, Ontario, Canada M4G 1R8
T: 1-416-425-6220 x3270 or 1-800-363-2440 x3270 (toll-free)
F: 1-416-425-1634
E-mail: esurvey@prismlab.org
Elaine Biddiss, Survey Coordinator <esurvey@prismlab.org>
Toronto, Ontario, Canada - Tuesday, November 07, 2006 at 15:50:03 (GMT)
I am a recent BK amputee (01/04) on the left leg with partial paralysis and a messed up hip on the right side so my prosthetic leg is my good leg.
I am in need of my second prosthetis.
My current one is a pin and lock system. I am interested in a vacuum system like the OttoBock Harmony but my prosthetist is against it saying the liner tears a lot and I can't risk a fall.
Please email me with your pros or cons for vacs versus pin lock. I am 5ft 4 and weigh 115lbs. I am really struggling with this decision.
Thanks,
Fern
Fern Alix LaRocca CFP EA <fern@afdadvisors.com>
Sunnyvale, CA USA - Tuesday, November 07, 2006 at 12:22:16 (GMT)
Hi All,
I'm am a blind, bi-lateral BE (below elbow) amputee, having lost my hands and eyesight, most of my hearing, most of my face (which is no big loss, since I didn't look all that good prior to the explosion anyway), and my right kneecap, in a demolition accident in 1984.
I was serving with the Army at Ft. Lewis, WA, when two pounds of plastics detonated slightly before I intended, screwing up an otherwise nice Sunday afternoon!
Being blind, I had a Krukenburg(?) procedure on the right stump (about 10 inches long), which is where they split the stump from the end, to the elbow, then separate the muscles, wrapping them around the two bones in the forearm. This gives me a lobster claw-type forearm, which allows me to somewhat feel what I grasp.
I rotate my wrist clockwise to close the pinchers, and counter-clockwise to open.
Prosthetics are not that useful to the blind, since I cannot "feel/see" what I am grasping!
My left stump is about 6 inches long, and too short for a "Kruk."
I just finished my degree at University of Phoenix, and am employed as a Software Developer for Freedom Scientific, Inc., a developer of the JAWS (Job-Access With Speech) screen reading package that allows the blind to use computers.
For keyboard access, I use an outdated Adapt-2-U, a device that allows me to do keyboard input via Morse code. I can manage 55 wpms with this method, and use it to access my job, banking, shopping, etc.
One of my challenges (other than my 11-year old daughter, going on 30), is that I am trying to find a bidet that has controls I can operate!
I currently have an American Bidet, and it has a lever just to the left, and behind, that I can reach with my left stump, but the company is out of business, and the seat doesn't fit standard toilets all that well.
I would like one with the touch pad, but one that could have the pad mounted about shoulder-level (when sitting) that I can just touch with my left or right stumps.
Perhaps a remote?
Anyone got any ideas on these puppies? Perhaps a foot pedal?
Any assistance would be appreciated!
PS:
I cracked up when I saw/heard the name of the site on Google!!
Thanks,
Dennis...."Visually impaired as a bat!"
Dennis Brown U.S. Army Retired <DennisTBrown@Comcast.net>
Stone Mountain, GA USA - Saturday, November 04, 2006 at 22:26:23 (GMT)
My dad just had his right leg amputated yesterday. He has been suffering from rheumatoid arthritis for a couple of years. Initially, they only took the toes, but due to the restrictive blood flow, the wound was not properly healing.
I knew that a leg amputation was a possibility, but it was so devastating nonetheless. The only thing I can think about is how active my dad used to be, how he walked me down the aisle, how things will never be the same.
Has anyone out there suffered an amputation caused by RA or know of someone who has?
I know that he has such a hard battle ahead, which could be compounded by his illness.
Does anyone have any advice or words of encouragement?
Thank you.
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
---Albert Einstein, 1879-1955---
Celeste Barber <cel_e2001@yahoo.com>
Culloden, WV USA - Tuesday, October 24, 2006 at 18:45:42 (GMT)
Tom...I'm an honorary Stumps member. I had both hips replaced this past year. I say I had my amps at the top instead of the bottom.
I'm also a retired doc (family practice and ER)
I have a BMW K1200LT with a sidecar.
I read your post on the Stumps guestbook and thought you'd like the following site.
http://www.mtb-amputee.com/motorcycleamputee.htm
When you're going through Hell, keep going.
Winston Churchill
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Flight to Arras
Antoine-Marie-Roger de Saint-Exupery
Curt Kovacs, M.D.
Sun City , AZ USA - Thursday, October 12, 2006 at 23:12:23 (GMT)
Thank you...I'll research Hosmer's options and availability.
Rick Carlsen <RickCarlsen@prodigy.net>
USA - Wednesday, October 11, 2006 at 12:25:03 (GMT)
I have started the only gay (LGBT) amputee peer support and discussion group in San Francisco. Our first meeting was Saturday. We will be meeting monthly. I have done a lot of community outreach with more to come, and I thought there may be some in your group who might be interested.
I am myself a RBK from a motorcycle accident in 1992.
We have a simple website set up at www.sanfranciscogayamputees.org that I update with meeting schedules and contact information. I have also got a listserve set up.
The next meeting is Saturday November 11 from 11:30 am to 12:30 pm at the LGBT center at 1800 Market street in San Francisco.
Peter Little <peterclittle@msn.com>
San Francisco, CA USA - Tuesday, October 10, 2006 at 00:16:47 (GMT)
Tom Lanno in Boone, NC...Your best bet is to contact The Amputee Coalition of America's National Limb Loss Information Center Toll Free: (888)267-5669
The ACA has a national data base of Amputee Support Groups.
Good luck Tom!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, October 07, 2006 at 12:42:35 (GMT)
Dan...I am trying to keep a positive attitude about the impending amputation of my left leg due to diabetes. I enjoyed your photos and approach to dealing with things.
I, too, am a motorcyclist and while things look somewhat bleak today, I will keep your "Stumps R Us" thoughts to help me through this.
Do you know of such a support group in the north western North Carolina area? (Boone, NC)
Be well -
Tom Lanno <tplanno@bellsouth.net>
Boone, NC USA - Saturday, October 07, 2006 at 12:37:13 (GMT)
The Inspirational "This Old Cub" and Stumps R Us
"This Old Cub" is our critically acclaimed documentary feature about Ron Santo, former All-Star 3rd Baseman for the Chicago Cubs. Ron is a double amputee who has lived with diabetes for over 48 years. The second act of our film documents his courageous rehabilitation after his second leg amputation.
Ron's story has already inspired thousands of people who suffer from diabetes and, through our film, we have raised $500,000 for the JDRF.
It is our goal to get This Old Cub out to as many patients as possible across the country who have undergone, or will soon undergo, amputations. We know Ron's story can have that same kind of positive impact on the people out there who are amputees. We would like to create a win-win situation with an organization that shares our goal in getting this film out to as many patients as possible.
Your involvement could be as simple as reviewing the film for your members but we are certainly open to any ideas or thoughts you might have.
There is additional information on our website, www.ThisOldCub.com.
I'll look forward to hearing from you.
And if you are a SF Giants fan, please do not hold that against us since Ron played for the Cubbies.
Patrick <contact@thisoldcub.com>
Chicago, IL USA - Thursday, October 05, 2006 at 22:31:35 (GMT)
Hi...I have a question for you.
My name is Christie Hagedorn and I have been an amputee since 1985 due to an accident. I have a left B/K trauma amputation which has lead me through many journey's. 11 years on crutches and 22 surgeries.
I am a fitness trainer for the YMCA of Davenport IA. My dream is to start up a huge program through the YMCA's of America to get amputee's into fitness and personal training and come for mental and emotional reasons as well!!!
I have personally trained non-amputees and they are sooo encouraged by me and what i have done and can do just being a amputee.
I now have my 4 kids grown. I would love to get other amputee's excited and about exercise and fitness!!!!!
If you know anyone who would love to be personally trained or if you have any suggestions i would love your input!!!!
Thank you for everything you do for amputees.
christie Hagedorn <tim_christie@mchsi.com>
Davenport , Iowa USA - Wednesday, October 04, 2006 at 19:10:17 (GMT)
Reba Goodwin...I elected to voluntarily amputate in order to get on with my life. I never regretted the decision. I didn't want to face a life of UNECESSARY pain and limited mobility. The amputation solved that problem COMPLETELY!
Your decision is a sound one and I have a recommendation for you.
Please consider having an ERTL surgical amputation. You will find links and full explanation of the procedure on page one of this web site.
Be sure to get a video tape of the ERTL procedure and choose a surgeon recommended and trained by the ERTL brothers. (the tape is available from the Barr Foundation in Boca Raton, Florida). Be certain you and your Doctor get the follow up protocols from the ERTL trained surgeon.
Good luck in your second chance at a better life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, October 04, 2006 at 13:32:28 (GMT)
I am a 35 yr old mother of two preschoolers. I live north of Boston. I have had 13 surgeries in 15 years on my left knee, but with many more to go.
I have been considering electing an above-knee amputation to improve the quality of my life.
As an athlete in high school I tore my ACL, meniscus and cartilage. Half a dozen surgeries later, I was finally diagnosed has having a "malalignment", my femur and tibia did not line up properly, presdisposing me for all my injuries. I had my tibia cut in half and rotated and pinned. However, still having caritlage issues, I grew bone spurs which dug holes into my femur. I had a cadaver bone transplant which subsequently failed.
I had doctors tell me the only thing left to do was to pin my femur and tibia together, which to me would be no life at all.
Last year, I finally found someone to give me a total knee replacement- he said it was one of the worst knees
he has seen, like an 80 year old. The replacement had given me some relief, but I only get between 15 degrees and 90 degrees of mobility.
I now keep having to have aggressive scar tissue removed. Each time it is surgery, then physical therapy and then the scar tissue comes back within weeks of being removed. My Tibia is also osteoporotic and every step is painful. All of which has caused scoliosis in my back and pain daily.
I am weary, want to get off the pain meds and be an active mother with my two children. Emotionally, I can't handle having to keep going in for experimental surgery after surgery, just to end up needing full replacements every 10 years or so.
I just want to get healthy again, play with my children and not have to watch from the sidelines because I am in pain or on meds.
According to your introduction, you said you do not regret your choice. Do you know of others who have elected amputations?
Thank you for listening.
Reba Goodwin <rgoodwin22@hotmail.com>
USA - Wednesday, October 04, 2006 at 13:22:46 (GMT)
Rick Carlsen in Fayetville, Arkansas...Stumps 'R Us C.P. Wayne Koniuk suggests HOSMER.
daniellle cavezza <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 03, 2006 at 13:02:50 (GMT)
I have a pretty short stump on my left arm, only 3 inches below the elbow, due to birth defect.
I'm 46 and have worn my prosthetic my entire life, a split socket elbow joint and hook. My lack of leverage has required the use of a "step-up" style elbow hinge. The problem is they get sloppy after a few months, and there doesnt appear to be many suppliers/styles.
I tried one by Otto Bock recently for the 1st time. It worked great about 6 mos, then broke.
Does anyone know a supplier of a good, sturdy step-up hinge??
Thanks.
Rick Carlsen <rickcarlsen@prodigy.net >
Fayetteville, ARK USA - Friday, September 29, 2006 at 12:09:34 (GMT)
Sarah Iverson Sundance Catalog Community Relations
Contact The One Shoe Crew. Their address is:
One Shoe Crew
9328 Aizenberg Circle
Elk Grove, CA 95624
That is precisely what these good people do.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, September 28, 2006 at 00:24:36 (GMT)
Hi there
My name is Sarah an I work for Sundance Catalog we have a large amount of shoes we receive from vendors as samples, because they only send one shoe we don't have any need for them and are looking for a place to donate them to. Is that something you would be interested in?
Sarah Iverson
Sundance Catalog
Community Relations
Sarah Iverson <Sarah.Iverson@Sundance.net>
USA - Thursday, September 28, 2006 at 00:21:08 (GMT)
My husband is an amputee who has lost both of his lower legs below the knee to diabetes. We live in Oregon and he is looking for a support group.
He would like to talk to others that are similar to him. He is only 79 years old and has a wonderful attitude and doesn't feel sorry for himself.
Please let us know of a localsupport group.
Thank you
Daniel and Judy Clark <ju5cl@aol.com>
Riddle, OR USA - Tuesday, September 26, 2006 at 12:55:22 (GMT)
Lorraine Skiles in Union, MO... If the young man is in Mo.
he most likely has coverage under Medicaid, provided he wants to be helped.
He should make an appointment for an evaluation and estimate for rehabilitation with a local prosthetist that most likely will submit his payment to Medicaid.
Go to www.abcop.org and enter the city and town the amputee lives in and ask him to contact them.
If he does not qualify below are our funding parameters.
The Barr Foundation Amputee Assistance Fund was established in 1995 through grants from the Barr Foundation. The mission of the fund is to provide assistance to amputees that cannot afford limbs, have no other financial resources, and to promote quality prosthetic care for all amputees. This is accomplished directly by providing reimbursement for materials and maintenance costs to prosthetist that provide limbs to amputees who have no other source of funding. This program is a cooperative effort between the Fund and the amputee's prosthetist to improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees whom are not USA citizens and have individuals, churches or business organizations to make tax deductible donations to the Barr Foundation whose funds can be specifically utilized for a select applicant.
In order for the amputee to receive an application, they must contact a board certified or state licensed prosthetist that may be willing to sponsor them.
See:
http://www.abcop.org
The prosthetist ,considering sponsorship, must request the application directly from us by calling 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that may be sponsoring him/her, prior to them requesting an application in the amputee's name. Please provide the prosthetist with the amputee's name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding unless another source of funding from an individual(s) or organization(s) is participating to share equally in the reimbursement level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening process by one or more members of the review committee upon submission of the application, which is to be completed by both amputee and prosthetist. The applicants will be considered based on need, first time for prosthetic rehabilitation, age and general health conditions. Sponsoring prosthetist must accept our reimbursement levels as payment in full and provide a six
(6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a condition of the approval by the sponsor, physical therapist or other qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us with a $25.00 nonrefundable application fee. We will then have 4-6 weeks to process the application and the prosthetist will be notified as to approval or denial. If the application is not received within the 30 day period of sending the application it will be cancelled and the prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Most likely the patient can qualify for Medicare/Medicaid funding.The prosthetist can help you determine that.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Anthony T. Barr
Barr Foundation
Tony Barr, Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Monday, September 25, 2006 at 23:19:47 (GMT)
I am a nurse who is caring for a quad-amp. She is a new amp and we are trying to find ways for her to adapt and be able to go home pending prosthetic fittings. My problem is this.
She is able to toilet herself but is unable to don and doff clothing. I am interested in tips from others as to ways that they have adapted clothing to be more independent.
My client is a bilateral above the knee and missing all digits and part of the palms of both hands. Any help or advice that you may be able to direct in my way would be greatly appreciated.
Thanks so much.
Mary Ann <nursemoondancer1014@verizon.net>
USA - Monday, September 25, 2006 at 15:28:12 (GMT)
Lorraine Skiles in Union, MO...Could you be a bit more specific?
For example:
1) A/K or B/K
2) His name
3) Where he lives
4) If he is a minor who would act as his guardian?
5) Is he a U.S. citizen?
6) How would he be contacted?
I suggest you contact Tony Barr of the Boca Raton BARR Foundation with these specifics already answered. Perhaps Tony can assist you and your phantom amputee.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 25, 2006 at 15:20:30 (GMT)
I have just learned about a young man-- no insurance, who is minus a leg. His mother is deceased and the father likes beer --- So there is no support for this youngster.
He is a teen ager, I think.
I do not have all the details about how he became an amputee so am asking if anyone on our mail list might be able to give me information that I can, in turn, pass on to someone who is interested in getting this person on his two feet again and out of the wheelchair.
Lorraine Skiles <lorskile@fidnet.com>
Union, MO USA - Monday, September 25, 2006 at 15:14:03 (GMT)
I am a television researcher based in the UK looking for people who have survived through extreme circumstances.
We are in development with a new science based programme and in particular we are looking for people who have had to cut off a part of their body to survive and we want to hear about their brave story. Just wondering if you know of anyone who maybe interested in talking to me about their experiences and their personality which gave them the will to survive.
Hoping to hear from you soon.
Emma Martinhttp://www.angliafactual.com
Emma Martins
Associate Producer
Network Factual
ITV Anglia
(00 44) 1603 752275
www.angliafactual.com
Please visit the official ITV website at www.itv.com for the latest company news.
Emma Martins <Emma.Martins@granadamedia.com>
UK - Monday, September 25, 2006 at 15:05:12 (GMT)
Dave Paschold in Lincoln, NE...Yours was a brilliant and soundly educated choice to have chosen Orthopedic Surgeon William ERTL to perform your B/K amputation.
The ERTL Procedure has changed so many lives into productive, positive, relatively pain free futures.
Continued good fortune and even more good decisions.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, September 12, 2006 at 21:16:39 (GMT)
A brief note to let you know that I was in to see my prosthetist (Jason Dean) this morning, and was able to walk on two feet for a while.
He had made the prototype, and will make a more durable socket that I expect to get into next week on the 21st.
There was some pain to the walking, but nothing out of the ordinary for the scope of what has happened in the last 8 weeks.
Jason indicated that it would be highly improbable that I would be into anything this soon had I gone through surgery with a NON-ERTL BK. Dr. William ERTL is my hero!
It felt great to be back up on two feet for that short time.
Thanks for the interest. I will keep you updated.
Dave Paschold <dlpaschold@agriliance.com>
Lincoln, NE USA - Tuesday, September 12, 2006 at 21:10:45 (GMT)
Ken
I'm praying for you. Hope all goes well!
Agnes
Agnes Gootee <agnes.gootee@navy.mil>
USA - Monday, September 11, 2006 at 12:26:14 (GMT)
Jim Fay in Boston, MA...Join the Stumps 'R Us CREW? With your whimsical and positive attitude we would love to have you as a dues paying active member.
Send your USPS address and phone number to:
Stumps 'R Us
Attn: Dan Sorkin
2109 Skycrest Drive #1
Walnut Creek, CA 94595-1828
By return mail I will send an Amptee Survival Kit PLUS a Stumps 'R Us Membership application including an invitation to our next event in October in a Concord, CA Buffet Asian Restaurant (details on page one of this web site) It is well worth the plane ride to attend.
daniellle cavezza <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, September 09, 2006 at 19:19:37 (GMT)
Hi Dan
I would like to join your crew.
I am 58 and in 2003, I was in the Lobby of Beth Israel Hospital of Boston waiting to see a Vascular Surgeon for a Lower Leg ByPass when my appendix burst and I had the DT's.
After 3 Months in a Coma I awoke to find My Left Leg had gone to Heaven without Me. I also had a Stroke while "Napping"
Never get sick in early July-You are SURE to meet Doogie Howser-I am told.
As a Graduate of Villanova, I spent time making a living as a Manufacturers Representative-Office Supplies(B/4 Staples Etc), Small Leather Goods and fine Writing Instruments(Pens).
I have logged over 14,000 NM in 3 Boats of my own and currently STILL sail CONNEMARA, a Sabre Sloop.
In addition to 3 Months at Beth Israel, I was lucky enough to get into Spaulding Rehabilitation Hospital in Boston, one of the Worlds best.
Over 2-3 More Months, they taught me how to walk again. They also decided that I was an Alcoholic-Imagine!
I came from there yesterday after attending an Amputee Support Group as an outpatient. There were 3 of us. SO SAD.
Best
You can find Me on EBAY as:
TheCaneGent
I could not find "Nice" Walking Sticks anywhere.......
Jim Fay <JAMESLFAY@cs.com>
Boston, MA USA - Saturday, September 09, 2006 at 19:10:04 (GMT)
David Alstone ~~~~~~~~I'm not advocating breaking the law but I also know that prosthetics are being sold or auctioned on eBay.
I can't guarantee reliability or responsibility for any item there but you as an individual and your friend as Americans can buy anything you want there.
The legal mumbo jumbo about buying used prosthetic devices in America is true but I think the repercussions are for CP's and O&P Clinical Offices.
My thought is it's like the "DO NOT REMOVE" tag on the bed pillow. Who's to know where you got your leg as long as it works.
As always shop wisely and do your research
On a comical side I hear outdoor patio umbrella stands and Duct tape work well..
Have a good week
Joe Kennedy <joseph.kennedy72@verizon.net>
Lutz, FL USA - Thursday, September 07, 2006 at 22:50:31 (GMT)
I hope that at least someone will help with info or good advice
I’m writing on behalf of my friend. His situation is rather complicated, he isn’t fluent in English so he cannot advocate for himself.
He is a young,intelligent guy, who just started his adult life.
He is not covered by any insurance and he can’t afford to pay for his prostheses after he lost his leg and his job (he was/is a construction worker).
He needs to work again in order to buy himself a new prostheses. In order for him to get back to work, he needs a temporary but working A/K prostheses, There is no other means, options or any “happy endings” in this case.
I know that artificial limbs cannot be reused in the United States. We don’t want to break the law. But a technician, who is familiar with these matters has offered to assemble a prostheses for my friend. All he needs are the mechanical parts.
My friend is desperate and has no other choice but to use this temporary prostheses, until he saves enough money to buy a new one.
If anyone is willing to spare an old, right leg above knee prostheses to be disassembled, please contact me.
That would be appreciated.
I will cover all the shipping expenses and will be forever grateful for helping my friend in this very difficult, uncomfortable and uneasy situation.
Any other sugestions, tips advices may help as well.
Thank you...
David Alstone <alstonex72@yahoo.com>
USA - Monday, September 04, 2006 at 15:26:15 (GMT)
Hi, Amy...
I am the wife of a diabetic amputee (LBK) who is trying to heal some ulcers on his stump and on his remaining leg. I have been reading the posts on this site and they have been very helpful to me.
I am looking for support for myself as the caregiver and I can offer you support on your journey. Write if you would like to.
Mary in Massachusetts
Mary <WeRPenguin@aol.com>
MA USA - Monday, September 04, 2006 at 05:33:29 (GMT)
Amy Pederson in Houston, TX...
The best place to find support groups in your area would be through the ACA (the Amputee Coalition of America).
You can scan their Web site at:
http://www.amputee-coalition.org
Or E-mail them directly at:
editor@amputee-coalition.org
Or call them TOLL FREE at:
(888) 267-5669
Dan Sorkin <DanSorkin@gmail.com>
Santa Rosa, CA USA - Saturday, September 02, 2006 at 16:30:48 (GMT)
Hi...
My husband is 34 and just had a bilateral below the knee amputation, and now has had several fingers removed with the possibility of having more removed and possibly his hands.
I am looking for some info and support for him.
Thank you!
Amy Pedersen <Meandmycuties@houston.rr.com>
Houson, TX USA - Saturday, September 02, 2006 at 16:25:22 (GMT)
Hi...
I have had a Harmony system since Nov of 2005. I am very displeased with the durability of the inner liners. My prohstestist is also not pleased with them. They are only lasting about a week or two before starting to crack. They are having major quality issues.
The first one I had lasted about 5 months, and I thought that was bad, boy was I wrong.
Do you know of any other inner liners that will work with a Harmony VASS system?
I am going to try one of Smith’s evac inner liners to see how they hold up. I need something that will last.
The Harmony is more comfortable, but I need something that I know will not break every other week.
Thank you.
Lee Thomas <leethomas@prodigy.net>
USA - Wednesday, August 30, 2006 at 03:23:49 (GMT)
Linda Hogan
Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics suggests that you call:
Certified Prosthetist Stan Patterson at (407) 448-7969.
Stan fits hip disarticulations allowing the user to RUN!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, August 26, 2006 at 02:25:33 (GMT)
Linda Hogan...
It is remarkable how quickly a 14 year old will recover from a devastating injury. They are much better at it than we "adults" sometimes are.
From your description it does not sound encouraging for a prosthetic limb to be prescribed. There has to be some residual bone structure (femur) for the prosthesis to be attached.
That said, it does not mean that his athletic days are over. One legged skiers, snow boarders, drivers and pilots have conquered the problem with all kinds of ingenious solutions.
Send me your name & USPS mailing address. By return mail I will send an Amputee Survival Kit including a pamphlet bearing that name authored by Tony Barr of the Boca Raton, FL based Barr Foundation.
I have Cc CEO Tony Barr of the Barr Foundation, C.P. Wayne Koniuk, C.P, Julie Chandler and Angela Briguglio. Angela is a bi-lateral to the pelvis amputee and member in good standing (pardon the pun) of Stumps 'R Us.
Please keep me up to date on what progress is made with your 14 year old Grand Nephew.
Dan Sorkin <DanSorkin@gmail.com>
Santa Rosa, CA USA - Friday, August 25, 2006 at 22:06:02 (GMT)
Dear Dan,
I read about you on line while searching for information that might help my fourteen year old grand-nephew who. two weeks ago. was struck by a drunk driver while he was helping to push a car that had run out of gas. His left leg was nearly severed at the pelvis, and for the past two weeks doctors have beenworking around the clock trying to save his leg; however, it doesn't look hopeful. If an amputation is done, we have been told that because his hip joint is affected, there can not be a prothesis.
Is this correct information?
I guess having all three leg joints, ankle, knee and hip, impaired is something that is impossible to replicate.
Naturally our whole family is devastated and we are searching everywhere for helpful information.
Shane is the most wonderful teenager imaginable. He has always been a positive and loving boy which I'm sure will help him with his recovery. But his life will never be the same and the adjustment will be a great one for him since he is very athletic.
We are wondering what kind of referrals we might offer him that could help him with his recovery and subsequent adjustment??? Also, we wonder if there might be a really excellent specialist somewhere that we could contact on Shane's behalf?
Thank you so much~ we are greatly appreciative of all the help we can get!
Linda Hogan <lindarhogan@cox.net>
USA - Friday, August 25, 2006 at 22:03:11 (GMT)
Neal Seigfried in Bixby, OK...About the GHOST FOOT
I made a flexible cast of the socket and foot. I used this so the guy could have his leg back. I filled the cast with a pipe inserted so the cast would not break. A parting agent was applied and more plaster added until the desired shape was accomplished.
1/8 Surlon was draped and vacuum molded over this with the seam down the back. It Was removed trimmed and polished.
Your local Prosthetist or college artist should be able to do this.
Good luck!
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
Santa Rosa, CA USA - Wednesday, August 23, 2006 at 03:18:46 (GMT)
Neil Seigfried in Bixby, OK...
No penalty...no foul!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 22, 2006 at 03:51:30 (GMT)
I'm sorry I forgot my info. It is as follows:
Neal Seigfried
11516 S 66th E Ave
Bixby, OK 74008
Thanks for the reply
Neal Seigfried <puglover22@cox.net>
Bixby, OK USA - Tuesday, August 22, 2006 at 03:50:06 (GMT)
Dave Paschold...
I am an amputee and a Seal In user, as well as a Technical Service Representative for Ossur (who makes the liners). Feel free to contact me directly and I can try to answer any questions you have as well as try to find you someone in your area.
Best regards!
Matthew Henderson <mhenderson@ossur.com>
USA - Tuesday, August 22, 2006 at 01:39:19 (GMT)
You have a lot of questions in your message.
It is going well, and I will be very interested in helping spread the word about the Ertl Procedure, as things progress.
My prosthetist here in Lincoln is Jason Dean, with Hanger. He has had experience in fitting Ertl patients, and is excited to work with my case.
I have spent countless hours studying and reading information on the ErtlReconstruction website, as well as the Stumps ‘R Us website, and as I get farther along, will be very willing to help out any way I can.
These resources led me to the procedure, and I realize how valuable it is.
On our 7 hour trip home to Lincoln from the hospital in Oklahoma City, just 5 days after surgery, I realized that the trip home was less painful (granted, I was on some strong pain meds) than the phantom pain I was experiencing traveling to OK City! I had sensed in the Ertl patient testimonies a bit of “unbridled enthusiasm” that almost appears unreal----until you go through it yourself to realize the difference! If the healing and fitting go as well as they have so far, I am eager to get on with things.
We will stay in touch!
Dave Paschold <dlpaschold@agriliance.com>
Lincoln, NE USA - Tuesday, August 22, 2006 at 00:54:09 (GMT)
David,
We are glad you are doing well with your Ertl and hope that the final outcome is successful.
The Barr Foundation funded the Ertl videos and supports and promotes the Ertl worldwide .
Could you also help us and others contemplating the procedure with a Ertl Amputee testimonial once you are successfully fitted?
Who will be your prosthetist?
Would you review the other 27 Ertl patient testimonials at www.ErtlReconstruction.com via Ertl Patient link, and consider doing one after your fitting?
Thank you.
Tony Barr Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Tuesday, August 22, 2006 at 00:43:09 (GMT)
Madonna Neely & Roy Webster...Please call Driving Specialties Limited and tell them I suggested you call. They are specialists in adapting car controls (moving the accelerator, etc.) for amputees.
They are located in Vallejo, CA but should be able to suggest a vendor in Seattle or Spokane for you
Call (707) 553-1515
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 21, 2006 at 01:58:47 (GMT)
My Dad is an 82 year old amputee, right leg. He has been trying to get his Town Car ready to drive and is having trouble finding a place to install the necessary equipment.
We live in rural Washington state, do you have any advice on who to contact or where to begin? Spokane or Seattle are cities we could take the car to and get this done.
Any information would be appreciated.
Thank you!
Madonna Neely & Roy Webster <webbrf@charter.net >
Rural, WA USA - Monday, August 21, 2006 at 01:47:18 (GMT)
To: Kathy Shank
Subject: New Amputee/Show him these videos -read him the testimonials.
http://www.ertlreconstruction.com/
Kathy,
Send me your address for mailing a book that I think will help motivate Ryan (and you) to know he is able to do everything he once did with proper prosthetic rehabilitation and the proper mind set. Life isnt always beautiful but it is a beautiful ride provided you make it that way !!
Here is what they are saying about the 2006 Amputee Survival Guide that I will send to you.
"A Survivors Guide For The Recent Amputee is the premier amputee resource booklet. Published and available from the Barr Foundation, it promotes beneficial amputee education. To realize their full potential, all amputees need to make intelligent and informed healthcare decisions. Obtaining accurate reliable information is the key to this endeavor. The Survivors Guide is designed to provide all the necessary answers. Written by amputees, for amputees, this important diminutive publication is straight forward, well reasoned, logical, and informative".
Kim L. Ruhl CPO
Good luck to both of you!
Tony Barr Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Friday, August 18, 2006 at 03:15:10 (GMT)
Kathy Shank in Wedgeville, WV...Be honest with your son about his loss. Believe me, he knows a part of him is missing.
Present the positive aspects of what happened to him. He is alive...his brain is not damaged...and he has lots of family and medical support AND thousands of people have suffered the same loss and got on with their lives with a positive attitude.
He will have emotional ups and downs...all normal. Having positive people close by is what he needs.
With a below knee prosthesis there is literally NOTHING he cannot do once he learns to walk, run, dance, fly, play basketball or anything else he did before the amputation in rehab.
After losing my leg I earned an Instrument Flight Instructor Certificate with Commercial priviliges and flew as Chief Pilot for an American Corporation until retirement.
He should feel free to E-mail me any time if he has any questions. I promise to answer immediately.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 17, 2006 at 22:02:22 (GMT)
My son, Ryan, was in a terrible car accident August 8,2006. He lost his left leg below the knee. He is not awake yet and does not know of his loss.
What do I say, how do I help him to be strong?
Kathy Shank <heritage11@starband.net>
Hedgesville, WV USA - Thursday, August 17, 2006 at 21:46:19 (GMT)
Lowell Sullivan...Sorry to hear (read) about your troubles with your socket. I’m an AK and have been living with the same issues for almost 20 years.
1) I much prefer the suction socket to anything else
2) I am in pretty good physical shape, and have an extremely long residual limb
3) When I lose weight I have those same “slippage” problems and when I exercise and the leg sweats to much.
4) I never use the liquid fit – don’t like the way it feels… I use a pull sock only.
I simply live with those same several annoyances (except the liquid fit part) and I have learned to keep my weight fairly consistent and I have not really found any other viable options – I wish I could be more helpful. If there is anything I can do or add please let me know.
All my very best ~LNK
Laurence N. Kaldor <Phenix7@msn.com>
Los Angeles, CA USA - Thursday, August 17, 2006 at 14:29:48 (GMT)
I am a very active BK.
The problem is I keep getting holes in my suspension sleeve's, and this causes air leaks so I end up losing my vacuum.
All I have to do is bump my shin against something and the inner gel liner splits, You can't see it from the outside but the hole is through the gel.
Has any one had good luck with any particular sleeve, or would I be better to try a neoprene sleeve?
Any advice would be much appreciated.
I would love to find a sleeve made of a rubber like an inner tube.
Todd VerWys <ToddV@classicdie.com >
Lowell, MI USA - Tuesday, August 15, 2006 at 18:36:15 (GMT)
Gabrielle,
There are many different ways of expressing love for another human being. Honesty and reality are but two devices in the quiver in the thoughtful caregiver be he (or she) a spouse, friend or acquaintence.
Verbal or physical abuse should be tolerated by no one no matter what the circumstance. You don't help someone by acquiessing to their fearful outbursts. You tell them the truth...always. The only sin is in abandoning the individual UNLESS they are physically abusive or place you or others in danger.
Political correctness never cured anybody of anything.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 18:23:15 (GMT)
Dan this is Gabrielle from Jacksonville Fl in the U.S.A.
As noted in my previous post to Mary Hulser I am a care giver to my husband who has a brain tumor and am also an amputee, so I am in both situations of living with someone who has had some thing horrible happen to them as well as having lost my leg to a misdiagnoses, so I was speaking to Elaine from both experiences.
My husband went through lashing out at me, but instead of telling him to get over it and move on, I have the compassion to understand and work with him where he is at in his healing process. When we love someone they are not a burden when they need to lean on us while they get strong, it is just part of loving them in good times and in bad.
You would do well to understand that not everyone feels that an amputation is a minor annoyance and not everyone is thirty some thing years out from having the amputation. It's a process of healing. You are well ahead of many people who come to this site for help. If you were perfect in this in the beginning that is wonderful but many like me are not.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
Jacksonville, FL USA - Tuesday, August 15, 2006 at 18:07:24 (GMT)
Mary Hulser N. Brookfield MA
I am a two year out LBK amputee facing a reconstruction next week. I am also a care giver for my husband who is a brain tumor patient, so I can relate from both sides of the coin. And as such I can tell you that "verbally slapping" your husband is not the answer. He is needing to express his emotions of what happened to him. If he is projecting those emotions at you then I would suggest that you try talking with him and acknowledging his need to express those emotions so both of you can work on finding ways for him to do so that he is still able to express it outward but in a different direction then at you.
This is a hard time for both of you, also think about seeking a therapist for yourself and your husband.
My husband was not open to therapy but I go. It helps me to process things of my own issues with my leg and also with having a healthy way to help my husband.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
USA - Tuesday, August 15, 2006 at 14:35:49 (GMT)
Mary in Quebec City, Canada...
That old adage, "One day at a time" really applies here. It reads as if Pat is doing too much. As a diabetic amputee he really has to be careful as the wounds are slow to heal.
There is a compromise somewhere that allows life to go on without being macho to the point where the stump is damaged.
Sky diving is probably not a good idea...today.
Having a friendly, affectionate wife with a sense of humor is all Pat can ask for.
You are playing out your role PERFECTLY! Keep it up.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 14:11:23 (GMT)
Hi...It's Mary from Mass.
I wrote to you the other day and I posted on StumpsRUs about slapping my husband.
We are now on vacation in Quebec City with our two teenaged children and it's difficult. We are trying to make the best of it, but Pat is having lots of trouble walking, has a cut on his foot, blister on his stump, wheelchair broke, can't rent a heavy-duty scooter, and QC is beautiful, but hilly.
It's really not as bad as I'm making it sound. We are happy to be here and to have him with us as we almost lost him last summer due to septic shock.
Many things will be dealt with when we get home, but for now, I could use a dose of humor and wise articulation.
Thanks
P.S. The most recent posts--Elaine, Gabrielle are hitting home and giving me lots to think of.
Thanks
Mary <WeRPenguin@aol.com >
Quebec City, Canada - Tuesday, August 15, 2006 at 14:04:17 (GMT)
Gabrielle in some city in some state in some country...
Thank you.
Your "advice" was posted to the Stumps 'R Us on line www.stumps.org GUESTBOOK at 5:59 AM Tuesday August 15th, 2006.
Your help might have carried more weight had you shared a personal experience with the whining mother who is determined to burden her daughter with undeserved guilt.
A minor annoyance like amputation is no excuse to destroy the lives of those closest to us.
As adults we should be better than that. We should be role models for our children.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 13:14:28 (GMT)
Ms Elaine from MD
It's perfectly normal to want to have your independence back, good for you! But it is also important to "WHINE" when you feel like it.
Cry, be angry etc. If we don't go through the emotions of the loss when we are going through it then it will come back at us later, either in physical problems or emotional problems.
Oh, wouldn't life be grand if we all could just laugh at every thing that happens to us, but guess what we are human, so be human and laugh when you can and cry when you need to.
Talk with your daughter about your need for independence, I would venture to guess she will be willing to listen and work with you to get you where and what you need to be the happiest.
Good luck and know you are in my prayers.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
USA - Tuesday, August 15, 2006 at 12:58:18 (GMT)
Stephen,
What is your last name? What City & state are you in? What country?
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 14, 2006 at 00:48:41 (GMT)
Hello Everyone
I will be having a b/k R leg on aug 22..r/t avascular necrosis..i am doing ok only mini moments of panic..am looking at this with humor..
Stephen <sresolvert@yahoo.com>
USA - Monday, August 14, 2006 at 00:45:20 (GMT)
Elaine from MD...Stop whining and get on with your INDEPENDANT life.
It sounds as if you have an incompetant moron as a Certified Prosthetist. There is no reason in the world why you are not dancing, dating, driving or sky diving...if that is what you want to do.
Be more aggressive about a proper, comfortable fitting prosthesis so you are completely mobile again. Get out of the basement and into the world.
Driving is no problem for amputees any more. You may need a device that moves the accelerator so you can use your left leg to use it. They are relatively inexpensive and are usually installed in less than an hour.
Good luck. When I hear from you again I assume you have emerged from the basement.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, August 11, 2006 at 16:30:33 (GMT)
Hi...
This is my first time using this message board. I am a divorced 63-year-old female R/AK amputee since spring 2005. I had complications after my surgery and was on a wound vac for most of last summer. In April of this year, I started my journey with using a prosthesis.
I have had all the usual problems with a prosthesis, mainly getting a proper and comfortable fit.
Prior to this amputation, I was a totally independent person. I controlled my own life and planned my own day. My daughter sold her old house (which she loved) to get a bigger house so I could come and live with her and her family.
One of the problems is that this house is not handicap friendly. It is 3 levels and I live in the basement apartment. I don't get out of the house as much as I would like and I feel so trapped. I am not ungrateful for what my daughter has done for me but unless things change and I am not so isolated, I don't know what will be come of me.
I feel like I am wasting away. I want my independence back so badly. I am trying to use the prosthesis but it has been difficult for me.
I also want to drive again.
How long does all of this take? Will I ever see the light at the end of the tunnel?
Elaine from Maryland <Lainiebrooks@comcast.net >
MD USA - Friday, August 11, 2006 at 16:19:22 (GMT)
I recently had an accident with some fireworks that resulted in me being a little "short handed" these days.
I lost my left hand right at the wrist. I'm well over it.
It happend 9 weeks ago.
What I want to do is have a little fun with it now. The guy that is building my hand agrees with what I want to do.
I want to find a 5 finger metal hand, quick release, that kinda looks like the Terminator hand in the movie. The sleeve is going to be air brushed to look like the inner workings of a robot/cyborg kinda thing. We are having some trouble finding such a hand.
Any ideas?
Rob Martin <PartsCar@aol.com>
USA - Friday, August 11, 2006 at 01:47:21 (GMT)
Mary Hulser in N. Brookfield, MA...As Dr. Laura would say, "Stumps 'R Us doesn't cure NORMAL".
Your husband being a diabetic amputee does not give him the luxury of abusing those closest to him. A positive attitude and lots of well applied humor does a lot to make life easier for all of us...your husband included.
Should your husband lash out at you or whine constantly you have my permission to "slap him silly" verbally.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 10, 2006 at 12:41:04 (GMT)
Hi
I am the wife of a wonderful man who had a BKA about a year ago due to diabetes. He is now experiencing some diabetic bullae (blisters) on his other leg that we are trying to heal.This situation brings up the trauma from last summer.
I am looking for support for myself. I tell my husband that I vary between wanting to take care of him and wanting to slap him silly.
Can anyone relate?
Mary Hulser <WeRPenguin@aol.com>
N. Brookfield, MA USA - Thursday, August 10, 2006 at 12:15:43 (GMT)
Leah in Milton, MA...The best thing you can do for your boy friend is to be cheerful and upbeat when you visit. He will have up days and down days. That is what we call NORMAL.
When he has questions have him E-mail them directly to DanSorkin@gmail.com I promise to answer immediately.
Once he has completely healed and physical rehab is begun he will be fitted with a prosthetic device so he can return to a normal life.
Successful rehabilitation is ALL in the attitude. It works for all of us amputees.
Amputation is but a bump in the road of life. I lost my leg in a motorcycle accident too BUT it was my fault. I was going much too fast for the road conditions.
That was more than 30 years ago. Today I am an active Instrument Flight Instructor, teach computer science, run Stumps 'R Us and have been happily married for 25 years.
Good luck to both of you!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 09, 2006 at 02:10:00 (GMT)
Hi!
I'm really hoping you can help me.
28 days ago, my boyfriend was in a motorcycle accident, and had to have a BK amputation. He is currently still in rehab, and I go visit him every night, but I know he has questions. Questions that I don't know the answers to - or even how to make him feel more at peace.
I love him very much and if there is anything that you can give me as far as advice to help get him through this, it would be greatly appreciated. I just don't have the right words to say right now, and I was hoping you have some.
Thank you very much for your time.
Leah.Coughlin <Leah.Coughlin@REEBOK.com >
Milton, WA USA - Wednesday, August 09, 2006 at 01:58:33 (GMT)
Its Been a while since I've seen any humor in here and it is my duty to uphold the mission statement of Stumps 'R Us
"Enjoy Folks"
100 reasons to be disabled
1. Cool toys.
2. Free money.
3. Random guys pick you up and carry you places.
4. Always the last person to be suspected of anything. (so true...)
5. Never have to wait in line at theme parks or concerts.
6. Priority housing.
7. Everyone thinks you're sweet and innocent (even if you're not).
8. No strangers will ever confront you because they're afraid of hurting your feelings.
9. When you run over people and tell them it's an accident, they actually believe you.
10. You can get people to do things like cook for you because you're in the chair.
11. Never have to take the stairs.
12. Hills are great fun if you have a wheelchair! (At least going downhill.)
13. People always look at you like you're an inspiration.
14. Double rides on all roller coasters.
15. Some teachers offer to help you out with notes, and you can show up late for class.
16. Every time you stand up, you can freak strangers out (or get an ovation from a crowd.)
17. Enormous bathrooms.
18. Shoes are an option
19. It's a great excuse for anything! (It's not my fault, It's my disability!)
20. You never have to worry about finding a place to sit
21. You end up with mad wheelie skills to impress people with
22. When your drunk, people never suspect, they just think that you have CP!
23. Time extensions on exams
24. You never have to do anything to get attention-- people are already staring
25. Never having to walk to class
26. Being able to "walk" with a use of a joystick
27. ELECTRIC WHEELCHAIRS CROWDS = FEAR
28. Developing a high pain tolerance is never a bad thing
29. Never having to demonstrate a problem on the board during math class
30. If you're slow people chalk it up to your disability instead of pure laziness
31. Burning off every calorie you eat at lunch in one trip to a non-handicapped accessible building
32. You could go out with a gaping hole in the seat of your pants and no one would notice
33. No matter what kind of crap you pull no one will ever kick you out of Bar or Club (hahahahaha)
34. Your wheelchair can double as a shopping cart when you and your friends go shopping
35. Handicapped Parking
36. An excuse to use the bumpers when bowling
37. Boyfriends or Friends the like giving you lots of hugs, kisses and sympathy when you fall, which is often
38. If people drop you or make you fall accidentally, they feel so bad that you could get them to do anything-- the question is will you?
39. No one makes fun of you for tripping and if they say, "walk much?" you get to say no.
40. People go out of their way to open doors for you
41. Going to college is a HUGE deal, if you go everyone around you is amazed
42. Parents brag about how "strong" you are
43. You get to kill stereotypes on a daily basis
44. You always have a lap to hold stuff on
45. People part like the red sea when they see you coming
46. Being bad at sports is a given so as long as you attempt to do it people are impressed
47. You have more life experiences than most people you know
48. Handicapped seating is usually in the front
49. Never having to take classes like gym and shop
50. You can get out in the middle of class at times
51. You can kick or hit people and claim it was a muscle spasm
52. People give you free drinks at coffee houses because the people at the counter think you're "sweet" )
53. If you break something by running into it or over it no one makes you pay for it.
54. You can meet the most awesome people when you have to ask strangers for help
55. Fuck with the heads of all the people that want to "save the poor crippled girl"
56. You can have your friends do your hair and makeup for you
57. The media loves you!
58. Everyone knows who you are (actually, a lot of people don't too.)
59. You're never too old for piggyback rides
60. You make a good walker for your injured friends or drunk ones.
61. You can get all excited about stupid stuff and people just think you're "cute"
62. You never have to act your age if you don't want to because strangers think you should be immature (i think i might be a bit insulted by that...)
63. You get to amaze people by actually being able to swim in the pool
64. If you don't have your chair with you many, many people will scamper and offer you their chair.
65. You can single-handedly be the amusement of all your friends
66. You get some great material for stand up comedy
67. You learn to appreciate the small victories
68. You are easily recognizable in a crowd
69. You are not easily forgotten (especially if run people over)
70. You can hide things next to you in your chair and or shop lift are they realy going to search your chair.
71. You can swallow pills without water
72. You are popular (even if it is just 'cuz you're the "cute handicapped girl"
73. People like to party with you! (There's nothing funnier than a drunk crip)
74. You can use the word "crip" and not be referring to a gang member
75. You never have to worry about getting your feet wet
76. You can use those carts with the seats attached at the store and make everyone wonder what the hell you're doing
77. No one ever questions your excuses
78. Pain killers (paid for by someone else)
79. Biker gloves aren't just for fashion anymore
80. No one questions anything you wear, do, or say
81. Slamming into doors to open them is kinda fun
82. You get praised for doing the simplest things
83. You don't have to worried about people giving you wedges
84. No worries if your pants are too big
85. Falling everyday gives you the skills to fall without injuring yourself
86. No one messes with you (for fear of being run over by a chair or impaled with a crutch)
87. You can incorporate your wheelchair into your Halloween costume and go as a transformer
88. If you drop something someone else will pick it up for you
89. You can in more circles in a smaller amo |
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