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)
Hi everybody
I got my appointment next tuesday with a surgeon to discuss the possibility of a hip replacement. I seem to be a bit unique in requiring this surgery as I am a bi-lateral amputee with a regular prosthesis on one side and a pylon on the other due to dislocated hip.
All as a result of a drunk driver pinning me against a wall.
As you see from my e-mail below, I thought maybe by posting on the web-site somebody out there might have gone through something similar i.e the traction bit and what's involved.
Perhaps I'll wait and see what the surgeon says as by next Tues nobody will have responded
Paddy
From: Patrick Lynch
Date: Tue, Feb 26, 2008 at 10:52 PM
Subject: Stumps R Us
To: dansorkin@gmail.com
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)
Im Paddy Age 54 from Dublin Ireland
pkettlynch@gmail.com
In July 2006 I got crushed by a van against a wall losing both legs (AKA Right, Left BKA). However the BKA residual has smashed acetabulum, dislocated hip and HO, and no sign of surgery yet.
I was hoping somebody with a similar problem who got fixed up might read this and reply so I can see how they are doin'.
Yours Sincerely
Paddy
Paddy Lynch <pkettlynch@gmail.com>
Dublin, Ireland - Monday, January 21, 2008 at 22:58:15 (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 |
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