Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 That is such a tough decision to make. I hope what ever you decide the pain will be less. My prayers will be with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 Jen, I agree with you. After dealing with a foot surgeon that wanted to fix everything, my new surgeon agrees with me that the next surgery will be to amputate rather than try to fix whatever else goes wrong. It's convenient having the foot attached, but at some point, enough is enough. There have been other posts in the past on this issue, and the concensus seems to be people are pleased with the results post amputation, and wish they'd done it sooner. O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 WOW Jen, I have never heard of anyone having an amputation done because of CMT and deformities. I wish you the best! Diane Gracely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 WOW, what a strong decision to have to make.. i am sorry to hear that you are having all these issues... i do pray that whatever decision you make, GOD will see you through it... Best of Luck.. and GOD BLESS... will keep you in my prayers.i know for me,this is alot different,but i had cervical neck fusion, and i was told that i would be so much better After the surgery, but i am NOT better. and the dr has dismissed me now, saying that i am just gonna have to LIVE with it... so make your decision wisely...sometimes i think these dr's are only out to CUT on ppl. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 Hi Jen, Although does not have CMT, he faced and made a similar decision. He has worked at the Getting 2 Tri camp last year following his amputation, and while there met a cyclist with CMT (and I correspond with him). Check out his blog and I am sure he would welcome contact from you with questions. He is a runner, and just did his first marathon as an amputee runner. His story is powerful and motivating. And he is now pain free. http://iiagdtr.blogspot.com/ Best wishes, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 When I was publishing the CMT Newsletter I ran articles by several men who had had feet amputated. Both were very happy and back on the golf course post amputation. It'll be a shock but living without pain will makeup for it. A tough decision but when all is considered, life is to be lived, not suffered. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 Hi Jen, I wish you a quick and speedy recovery. I hope you are as painfree as possible as soon as possible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 Hi Jen, I faced the same decision as yourself, I had my right leg amputed above the knee on July 2nd 08 due to an extremely painful knee caused by years of hyper extension etc, I firstly had it fused (perm. stiff leg) which was a nightmare to live with so eventually had it amputated. I no longer have the pain, I do have a prosthetic leg but is difficult to walk due to weakness in remaining leg. In cases of foot or below amputation walking with a prosthesis is extremely successful, I wish you all the best. PS I had not been able to wiggle my toes on bad leg for years, now I don't have it I can (phantom sensation is weird lol) Love Jill (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 , sorry to hear you have come to this outcome, I understand that the path to this place has been very difficult for you. Re: facing amputation Jen, I agree with you. After dealing with a foot surgeon that wanted to fix everything, my new surgeon agrees with me that the next surgery will be to amputate rather than try to fix whatever else goes wrong. It's convenient having the foot attached, but at some point, enough is enough. There have been other posts in the past on this issue, and the concensus seems to be people are pleased with the results post amputation, and wish they'd done it sooner. O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 I have......... my dad and two uncles. Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 We have had a few people on the list post about amputation. I am sure the posts are in the archive files. The last amputation was not all that long ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Since i posted in this group for support and feedback i feel the need to update, its been about 1 1/2 years ago i was amputated, i got lots of advice before the surgery but not alot after the surgery and i have been through alot and learned a ton of things that amputees experince. I must say it was the right decision for me and i have no regrets, my left foot is in bad shape now and after the amputation of the right foot i wont hesitate about removing the left foot, walking with a prosthetic leg is really simple and if i wear long pants no one knows, i however like to wear shorts to show the leg off!! hey it was over 15 grand i am gonna show it off lol! i still have some pain in the stump its not everyday and its usually my fault, you need to keep the stump tight in the prosthetic cup, carrying extra socks is a must, the socks take up the space in the cup because walking forces water out of the stump making it shrink then the cup is too large which creates problems. i have had lots of strangers talk to me about my prosthetic leg, out in public its kinda strange at first but they are looking for info i have found out sooooo i stop and talk to them, maybe it will help someone.my life changed with the CMT diagnosis, i was forced into retirement a major shock to me, but i have adjusted ok, not perfectly but i can live with it and i get too do stuff with my boys, i am a soccer coach, boyscouts, football, and tried to be the 5th grade basketball coach, for my son, i didnt get it, but its kool. my life has changed, i had an amputation and made lots of changes in my life............but nothing and i mean nothing is gonna stop me! the docs i have tell me i have the right outlook, they have some who have giving up and i can see how easy that would be, to lie around and feel sorry for yourself, my orthopedic doc said thats a big problem and a major huddle foe amputees. amputation isnt a big deal, a bump in the road! i have said what was on my mind, listen to your docs, take the advice, get your mind right and if you decide amputation is right for you then go for it, i did!.......be good take care and keep the info flowing, i read the posts everyday! Jim D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hi Jen, I've got a love/hate relationship with my feet. I love that they still let me walk, albeit slowly, painfully, and about as steady as a drunk on a hill! I hate that it often feels like I walk on glass, hot coals, or am being stabbed by thousands of needles! I have seen most recent discussion on this topic come down squarely in the positive, but I'm highly skeptical. I still have phantom pain from a nerve biopsy that was taken from my right ankle. They said that it would be painless and I would be able to go right back to work that day. BS! That was like 20 years ago! I haven't ever had surgery, as my orthotist and doctors have come down as mostly against surgery/amputation citing very poor outcomes in CMT foot surgery in general, and against any period of not walking due to increased muscle wasting. I have still thought about having my feet lopped off, to hell with pain! For now, I'm not done with mine. I can still walk to the jacuzzi, and step in. That and a cold beer makes everything feel better! (Alcohol is not recommended for CMT, but I'd rather have this bottle in front of me, than a frontal lobotomy, ha ha!) My feet might not be able to do it, but I plan on learning to surf, at 38! I want to scuba dive again, kinda need feet for that I think. And I can't imagine what sand in the socket feels like. On the plus side : no feet= no foot care, no shaving calluses, not trimming nails, no toes to stub. I sincerely hope that you don't have MY luck! Whatever you do, I also wish you relief. I'm interested in hearing updates too. Has anyone had my nightmare scenario? Or am I dead wrong? - > Quote Link to comment Share on other sites More sharing options...
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