Amputees Support Group
Amputation is the removal of a body extremity by trauma or surgery. Many have undergone amputation or have been living with a missing limb since birth. In either case, life as an amputee can be challenging. This is the place to find others going through the same experiences as an amputee. Share your thoughts, troubles, and solutions with the community.
Hi, my name's Sam and I'm 22. I'm hoping to talk to some people who know more than me and many doctors who will say very little to me. My podiatrist just sent out a referral for a surgeon who could potentially amputate my leg, below the knee. I truly think this is my best chance at better mobility eventually, but I'm scared as hell and I have no one to talk to.
So things about my situation, well, I landed wrong on a trampoline when I was 15, and now I have two osteochondral lesions of the talar dome (my right ankle, dominant side because I'm lucky like that), one is middle-left, and the big one is the talar shoulder, also osteoarthritis. I also have really severe nerve damage that spreads out through the top of my foot, and since the fourth surgery has gotten to the point I can no longer wear shoes, socks, slippers, or even have a blanket touching it- when inflamed or aggravated even the air seems to hurt and I frequently lay awake all night with the burning and buzzing, which I take Cymbalta for. The Cymbalta is also for the depression and anxiety because I rarely leave the house because walking is an ability I use for doing chores because I can't maintain a regular sleep schedule or function- I'm getting off track, sorry.
Surgery 1 was a four inch long incision and removal of the two shards of bone that were too small to reattach, cleaning out the single lesion of the talus at doctor could see at the time, and using kwire.
Surgery 2 was arthroscopic, clearing out the scar tissue, scooping out more of the talus that had died, and this surgeon discovering a second lesion that was a hidden pocket of blood and scooping that out, and using kwire.
Surgery 3 was a DeNovo transplant, arthroscopic, scar tissue was scooped out, both lesions were cleaned out, then both lesions were filled with young ankle cartilage and an adhesive was used.
Surgery 4 was clearing out as much scar tissue as possible until it was more harm than good so he left some, the transplant took as well as it could but it's not bone so the edges aren't great.
I've tried a cortisone injection, I've tried acupuncture, I own a wheelchair and now a knee scooter that I use when I HAVE to go out (groceries and doctors yay), I also have crutches and a cane and those are more for home use. I've tried Tramadol, Norco, as much ibuprofen and tylenol a human can have without dying, and am on a regular prescription of Percocet now, and I use marijuana almost daily but few things actually reach into the deep bone pain. My pain management specialist is trying to get some form of slow release pain patch authorized because my pain is all the time always and no one likes the "pain roller coaster".
I'm miserable, I've lost the ability to do...basically everything. I used to love sports, and swimming was my passion in life. I learned to swim before I could walk, but now I can't even do that because the water hurts my foot too. Even a bath.
I'm an eternal optimist, and I'm willing to try just about anything but my options are very limited now. I don't want more and more pills to be the answer, I can't wear any kind of brace because of the nerve damage, fusion and ankle replacement are not things I'm willing to try because neither of those things would address the nerve damage at all, it hurts like walking on a broken bone and all of my toes are partially numb, my whole leg is getting more and more painful because I can't stand or walk correctly and this April 24th it'll be 7 years of this.
I think I'm making the right choice??
Sorry to hear about your injury. I am a "recent" right, below the knee, amputee (in May 2017), anything under a year is recent :). Mine was a result of a year long plus battle with a series of bone infections in my heel that I ultimately loss. The battle included 3 hospital stays and a total of 10 surgeries. I also could have gone on battling but my podiatrist felt that my quality of life and my ability to walk would be significantly compromised, even if/when we beat the infections. She felt amputation would be for the best and I agreed.
I have zero regrets... I was back to work after the amputation in just over 2 months and my job involves a lot of walking, lifting and moving heavy material around. I am back to what I was doing physically before the amputation (coaching and I do a bit of hiking to do photography). The first year involves quite a bit of changes and adjustments in regard to your prosthetic but that becomes less and less. So don't let the idea of a prosthetic make you think or feel you will be limited.
Of course there are issues that come with a amputation/prosthetic too, everything isn't entirely normal, but they are pretty manageable.
Ultimately, you have to be the one to decide along with your podiatrist. It sounds like its the right choice but when you talk to them ask them about the prognosis if you do the amputation and go with a prosthetic and what is it if you don't. I know you are 22 but you need to be your own best advocate so don't let them quibble on the answers. Hopefully they will be straight up and honest with you.
If you want to talk more let me know....good luck.
Allen
I've been considering amputation for about five years now (before my second surgery) because from the very beginning I was aware there was nothing that could fix this- nothing can re grow missing bone and cartilage, and nerve damage is forever as well. The goal has always been as functional and painless as possible, but this foot and ankle will never be either.
Is there any chance you're a swimmer? Swimming is more important to me than walking and that's another thing I can't do anymore.
Also what about standing up on your toes??
As for swimming..well...I do like to swim and I'm a good swimmer but I haven't had the chance to go swimming since the amputation. However, me and my wife are taking a vacation in September to the Outer Banks and I'll be hitting the pool and the ocean (including jet skiing). I've already talked to my prosthesist and getting things set. You should definitely be able to get back to swimming...whether just in the water splashing around or doing it as a serious exercise. You can swim with out the prosthetic, with the prosthetic in some cases (a lot are made from carbon fiber and titanium) and they even make prosthetic swim fins (although this wouldnt be covered by insurance). So yeah you can definitely get back in the water. It's just something to discus with the prosthesist.
If/when it happens, when you meet the prosthesist for the first time one of the first things he'll do is talk/ask about your activity level and things you hope to be able to do and you can talk about swimming.
Lol..as for standing on my toes...ehhh...kinda. With the prosthetic you obviously can't bend your "toes" or your ankle. So I can do it with my regular foot and use the prosthetic foot as kind of a support. As a side note to that..I do drive (just fine too) and since it's my right leg that has the prosthetic and that controls the gas...instead of flexing my foot to give it more gas, I flex my knee (I use my left foot for the brake).
To get another perspective..go to youtube and search for AmputeeOT (or just google her). She's been an amputee for several years now and has done a lot of videos covering all kinds of topics (including swimming) and gave me a lot of insight while I was sitting around waiting to heal from my amputation.
When are you suppose to meet with the doctors?