New here, considering amputation.

[donj307]

I'll keep it brief as 20 years of hospitals and operations is lengthy.

Basically I broke my right tib n fib when I was 10. It was a bad break and was surgically re straightened before been put into a cast. 6 months passes the cast came off. And something just wasn't right. I walked with a limp and a very noticeable gait, pain, problems with my knee resulting in my leg going from under me, no sports etc. When I was 16 and had stopped growing it was decided the Leg needed breaking and resetting as it wasn't straight. So to stop any issues further in the future (as advised) I did it. It was straightened with a 8inch metal plate.

Waking up from surgery I was in agony and couldn't move my right foot and ankle and that's the beginning of all this really. I got compartment syndrome, which basically has to be diagnosed and treated in 6 to 12 hours or the muscles start to die, then you lose your leg, or even your life. They left me 5 days, needless to say I wasn't very well.and in excruciating pain. The muscles did die and I lost the anterior compartment and the remaining muscles where alive but not much use. So since 16 I've been on crutches, and use a wheelchair for distance.

Then I was diagnosed with complex regional pain syndrome an incurable neuropathic nerve pain condition. Tireless amounts of meds, ops and Neuro stimulation also, None of which worked. Then two years ago I had the leg broken and straightened again as the bones where fused and bent literally like a banana, this time there where no metal plates I had an external frame. It was one that i had to turn myself daily, it was on just under 6 months. The last 2 years have been the hardest of my life, the pain was just horrendous and along with other complications, blood clots, pain meds making me ill its been hard to recover and taking a long time considering where i was im so much better. But im not right and the pain is not easy, consequently I've been laid on my sofa since..... So this is why I'm here on this forum. Its been advised that the last resort and necessary route is an amputation. A through knee amputation. There's concerns about the crps because it won't go and the surgery could backfire and aggrevate it more, but its hoped that the functional pain will be gone and hopefully I'll be able to wear a prosthesis although its not gauranteed. This is my choice, I have to decide and that's what I've been trying to do for the last year almost. And its HARD! Not only is the amputation for my leg its hoped to stop amy more damage, as my back knees and hips are all getting worse due to walking funny all these years. If anyone is in a similar situation or gone through similar circumstances or can shine any light on amputation. Thoughts and opinions are welcomed greatly! Sorry its such a long message its hard to put everything down and keep it brief!

Thanks for reading!

[allen]

Hello Don,

That is a heck of an ordeal. Going with what you've said it certainly seems like an amputation seems the way to go...to be honest I'm surprised it wasn't brought up sooner. Anyway...I am a "recent" amputee, come up on almost a year, a right below the knee amputation. I'm not sure I really see a down side to getting the amputation. While my ordeal wasn't as drawn out as yours, it finally came to a point that I knew it was time.

My one thought is why "through the knee"? I assume below the knee isnt feasible due to the damage, but why not above the knee to really give you the best chance to wear a prosthetic? Either way you won't have the use of the knee so why not go above and really get rid of all the damaged parts of the leg? With an above the knee, you can get a prosthetic knee and foot (not sure with thru the knee if you could get a knee). That maybe something to ask the doctors.

With a prosthetic you can get your life back and get out doing some things...the products they have for both knees and feet are pretty amazing (hydraulics, microprocessors, robotics). Look on youtube and you can see above the knee amputees (some with both legs) out there doing all kinds of activities. That's not to say there arent issues being an amputee, but they are pretty manageable generally speaking.

Look at it like this...what's the upside and realistic prognosis if you don't go with the amputation (sounds like not great) and what is the upside if you do. Sit down and have a serious heart to heart with the doctor about those prognosis (don't forget to ask why thru the knee and not above).

Yea I don't regret my amputation for a second.

Good luck, and keep us up to date!

Allen

[donj307]

Apr 17, 2018 8:08:06 GMT -7 allen said:

Hello Don,

That is a heck of an ordeal. Going with what you've said it certainly seems like an amputation seems the way to go...to be honest I'm surprised it wasn't brought up sooner. Anyway...I am a "recent" amputee, come up on almost a year, a right below the knee amputation. I'm not sure I really see a down side to getting the amputation. While my ordeal wasn't as drawn out as yours, it finally came to a point that I knew it was time.

My one thought is why "through the knee"? I assume below the knee isnt feasible due to the damage, but why not above the knee to really give you the best chance to wear a prosthetic? Either way you won't have the use of the knee so why not go above and really get rid of all the damaged parts of the leg? With an above the knee, you can get a prosthetic knee and foot (not sure with thru the knee if you could get a knee). That maybe something to ask the doctors.

With a prosthetic you can get your life back and get out doing some things...the products they have for both knees and feet are pretty amazing (hydraulics, microprocessors, robotics). Look on youtube and you can see above the knee amputees (some with both legs) out there doing all kinds of activities. That's not to say there arent issues being an amputee, but they are pretty manageable generally speaking.

Look at it like this...what's the upside and realistic prognosis if you don't go with the amputation (sounds like not great) and what is the upside if you do. Sit down and have a serious heart to heart with the doctor about those prognosis (don't forget to ask why thru the knee and not above).

Yea I don't regret my amputation for a second.

Good luck, and keep us up to date!

Allen

Thanks so much for replying. Your the only one so far. Any advise or opinion is helpful. Finding through the knee amputees is quite difficult as its not the most popular one. We've spoke about above the knee and they aren't happy it will be as successful plus I'm heavy and above the knee is harder to walk with apparently. I've seen several specialists as mentioned this has been quite lengthy and they all agree on through the knee. But yeah will definitely ask again!

[cherylm]

Hi there guys......I'm a BK, myself, but faced the possibility of becoming a through-the-knee during a recent revision surgery. At this point, I'm not sure if my extremely short BK stump was the best idea or if a TK might have been a little easier. As I understand it, a TK can often bear weight on the end of their stump (which can be a very good thing) and there's that portion of the knee joint to hold the bones stable...however, a prosthesis for a TK means that the knee on that side will be positioned lover than the knee on your natural leg. Here's an image of a TK amp with a prosthesis, showing the difference in knee heights.



TK amp with leg

My above knee friends say that a short AK stump is very difficult to fit...especially coming up with something that's easy to sit on. Also, the less residual limb you have to hang that prosthetic leg off of, the more energy it will take you to move it. I've actually found that to be the case with my own new, short stump as well...there is so little bone coming off my knee that just holding my leg straight is a challenge (I have to wear a knee brace to stabilize things) and using that tiny bit of bone to move the prosthesis is much more difficult than when I had a much longer stump to use as a lever.

TKs are npt as common as either BKs or AKs, but the studies I've read indicate that the TKs seem to have an easier times with prosthesis usage, for what it's worth.

[donj307]

Apr 18, 2018 2:25:29 GMT -7 cherylm said:

Hi there guys......I'm a BK, myself, but faced the possibility of becoming a through-the-knee during a recent revision surgery. At this point, I'm not sure if my extremely short BK stump was the best idea or if a TK might have been a little easier. As I understand it, a TK can often bear weight on the end of their stump (which can be a very good thing) and there's that portion of the knee joint to hold the bones stable...however, a prosthesis for a TK means that the knee on that side will be positioned lover than the knee on your natural leg. Here's an image of a TK amp with a prosthesis, showing the difference in knee heights.

View Attachment

TK amp with leg

My above knee friends say that a short AK stump is very difficult to fit...especially coming up with something that's easy to sit on. Also, the less residual limb you have to hang that prosthetic leg off of, the more energy it will take you to move it. I've actually found that to be the case with my own new, short stump as well...there is so little bone coming off my knee that just holding my leg straight is a challenge (I have to wear a knee brace to stabilize things) and using that tiny bit of bone to move the prosthesis is much more difficult than when I had a much longer stump to use as a lever.

TKs are npt as common as either BKs or AKs, but the studies I've read indicate that the TKs seem to have an easier times with prosthesis usage, for what it's worth.

Yeah all that is correct. I can't have BK as that's the portion of my leg that would be left is too painful . and as I said in the earlier post they feel the through knee is the best option. Ive met a bloke with a TK in person and spoke at length with him for some time. I think what I've found with most people is pain. I have a pain condition. So I'm expecting it. But people without a pain conditions are in pain and are struggling greatly! So I'm just trying to get info from real amputees just so I have all bases covered. I appreciate everyones journey and story are different. Some of my family have a heather mills approach in their minds. Because she walks unaided skis did strictly etc. And I think they think that's the experience I will have. And its just not the case. We already know this going into it. They dont get how something can cause so much pain if its not there.
Thanks so much for getting involved!

[cherylm]

Because you are already dealing with pain problems, I think it's perfectly reasonable for you to be concerned about post surgical pain. At the very least, you need to discuss pre- and post-op pain control with your surgeon and anesthesiologist...there have been studies showing that going into amputation surgery with a day or two pain-free (due to an epidural or other means) and being kept pain-free for a few days following the surgery can help to prevent phantom pains in the future. That's the pain control regimen I went through with my initial amputation (13 years ago) purely by accident, and I've always felt fortunate that I did NOT have much of anything inthe way of phantom pain. Now with my recent revision surgery, I went through more periods where I WAS in pain...and I'm still having some recurring pain problems. (Still not as bad as many amputees deal with, but a lot more than I'm used to!)

I have tremendous admiration for the "super-amps" who are out there in the public eye, raising awareness of our existence, but you're right...many able-bodied folks look at the celebrity amps who have unlimited budgets for gear and the ability to travel anywhere to see specialty prosthetists and assume that this is how every amputee lives. It does frustrate you when you're not necessarily able to "perform" at the same level as the superstar amps. However, MOST of us live in a kind of "middle ground" somewhere in between limited mobility and pain and the unlimited, seeming freedom of the high-end celebrity amps. Most of us get along just fine, living average lives, doing average things with the occasional "bad leg" day but not much in the way of ongoing pain.

Even in my case, and even though it's taking a lot longer that I'd like, my life post-revision is continuing to improve. I have a very good prosthetist who is continuing to tinker with my new leg...and each new bit of tinkering is improving matters on the pain and mobility front. I have no doubt that, eventually, I'll be back up and running at full speed. So DO make sure that you have a prosthetist who is easy to talk to, who is willing to work with you, and you're very likely to have a good result.

[donj307]

Apr 18, 2018 18:48:36 GMT -7 cherylm said:

Because you are already dealing with pain problems, I think it's perfectly reasonable for you to be concerned about post surgical pain. At the very least, you need to discuss pre- and post-op pain control with your surgeon and anesthesiologist...there have been studies showing that going into amputation surgery with a day or two pain-free (due to an epidural or other means) and being kept pain-free for a few days following the surgery can help to prevent phantom pains in the future. That's the pain control regimen I went through with my initial amputation (13 years ago) purely by accident, and I've always felt fortunate that I did NOT have much of anything inthe way of phantom pain. Now with my recent revision surgery, I went through more periods where I WAS in pain...and I'm still having some recurring pain problems. (Still not as bad as many amputees deal with, but a lot more than I'm used to!)

I have tremendous admiration for the "super-amps" who are out there in the public eye, raising awareness of our existence, but you're right...many able-bodied folks look at the celebrity amps who have unlimited budgets for gear and the ability to travel anywhere to see specialty prosthetists and assume that this is how every amputee lives. It does frustrate you when you're not necessarily able to "perform" at the same level as the superstar amps. However, MOST of us live in a kind of "middle ground" somewhere in between limited mobility and pain and the unlimited, seeming freedom of the high-end celebrity amps. Most of us get along just fine, living average lives, doing average things with the occasional "bad leg" day but not much in the way of ongoing pain.

Even in my case, and even though it's taking a lot longer that I'd like, my life post-revision is continuing to improve. I have a very good prosthetist who is continuing to tinker with my new leg...and each new bit of tinkering is improving matters on the pain and mobility front. I have no doubt that, eventually, I'll be back up and running at full speed. So DO make sure that you have a prosthetist who is easy to talk to, who is willing to work with you, and you're very likely to have a good result.

With the CRPS its not that easy, its not really controlled by meds. And ive not been on any for a long while coz of side effects. My surgeon has suggested to start taking pregablin again 6 to 8 weeks before the surgery to help with pain after and of course while in hospital I'll be able to have the usual morphine drips and when I had my cage off I had keramin. The epidural thing i can't have I take riveroxaban as I got blood clots after my last surgery. I have to take these for the rest of my life. And I can't have any needles in my back because of this medication. Something to do with bleeding. I have discussed at length with the surgeon. He's a nice bloke and been super patient. As I'm like 12 18months into making this decision and still haven't. With my prior medical past been not great I'm just scared, nervous and worried. I'm only 32. I cant live another 20 30 years like this. So I feel I know the decision. I've started taking the pregablin as he suggested so when I do say let's go, I'm ready! It just makes me ill the medication. But hey you gotta do what you gotta do. Then I found this forum. And thought sod it I'm gonna post my story and hopefully find some ppl who have had the same situation. Or can just advise on amputation in general...especially the through the knee procedure its not the most common amp. Its usually above or below knee. Thanks for responding

[rachelmacfie]

Hi i had my below knee right side amputation 2 years ago now. I had a lisfranc fracture of 3 metatarsal's several years ago that was mis-diagnosed and i walked on it for a year (i am a diabetic and could not feel the pain properly) until my foot collapsed. Anyway i ended up having several operations for different types of metal plates, joints taken out, bone grafts etc..... but it still would not heal. Then one of the screws started to unscrew its self and show on the top of my foot. My surgeon said another screw had also unscrewed its self and repositioned its self in my ankle and broke my ankle! He did another surgery to take the screws out, but afterwards i got an abcess which lead me to develope sepsis. So it was decided that my leg would be better off than on. But since then i cannot get on with my false leg. Every time i put it on i can feel my broken foot there. The pain i had before is still there and i am still in my wheelchair 2 years later.And my foot feels like its twisting in weird posotions that are very painful.I built my hopes up and i am disappointed unfortunately. I dont want you to think this will happen to you but i have to be honest with you before you make up your mind, i am sorry. That small percentage they tell you about is real. Good luck no matter what you choose to do. Ill be thinking about you, Rachel, England

[maverick]

I don’t know if I’m doing this forum correctly but I have a question I’m in the process off elective amputation I’m 32 and I’ve had multiple knee surgeries 13 total I’ve also had a total knee replacement and a revision that kept getting infected which resulted in loss of knee cap and me not being able to bend leg and wear a permanent brace at all times and chronic pain the pain is getting unbearable they was originally going to amputate a few years ago after the last infection but a new dr came in and tried his best to save it it’s been 6 years and the pain is really bad my leg gives out constantly and I’m back on a walker I’ve had multiple second opinions and they either said amputate or knee fusion I’m scared of the fusion because my leg seems not to do well with foreign objects so I’m considering above knee amputation

[intpo]

Well if you need any advice or help we are always here for you in any way possible. 
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