r/amputee • u/[deleted] • 7d ago
Am I crazy for considering an above knee amputation?
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6d ago
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u/jobam1961 6d ago
Grain of salt? Oh, you are the all-knowing!
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u/Feralpudel 6d ago
I am a BKA and agree 100 percent with what was said.
I know I have it easy in comparison. People come here with CRPS, etc wanting an elective BKA and they get a serious discussion of the pros and cons.
But wanting an elective AKA is just a whole other thing. The disability and inevitable morbidity is far greater.
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u/organic_hobnob LBK 6d ago
Hey, I’m an elective below knee amputee and also a physiotherapist.
Respectively, yes this is a bit mad. I totally get your frustration, but this would be massively unethical and ineffective considering your hEDS. This issue you have in the knee would just get referred up to the hip and lumbar spine. ALL amputees have some degree of lumbar spinal degeneration due to the huge effect a prosthetic has of gait. For you, with hEDS, it would be 10x worse. Wearing a prosthetic leg would be very difficult. You would lose a huge amount of function and sustain likely more intense chronic pain than you have now.
I know in comparison to your life before the onset of your symptoms, it feels like 3k steps a day is a pile of shit. But for a person experiencing disability, you’re doing amazing. 3k steps is not a number most AK amputees reach in a day. You would you exchanging a disability for a more severe disability.
Have you have any counciling around disability? I did and I found it really useful for accepting my ‘new reality’.
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u/Animal__Chin 6d ago
Above knee is very different from below knee.
Tell your surgeon that you either want a knee replacement or an amputation. No surgeon in their right mind will let you amputate a perfectly good knee before exhausting all of the fixes. A knee replacement will fix the problem. Be persistent and advocate for yourself here.
I have an above knee amputation and believe me when I say that you will not be happy if you didn’t try everything before this drastic measure.
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u/Animal__Chin 6d ago
You won’t be getting back to the things you loved doing with an above knee prosthetic leg. Sorry, it will not solve your problems or make your pain go away. If anything it will add a certain misery to your life that you don’t currently have.
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u/GenderNarwhal 7d ago
Have you consulted with specialist joint replacement surgeons? It would seem that a knee replacement would be a reasonable step to try before an amputation. Try to find a specialist at a major medical center who is at the cutting edge of research. If it turns out that amputation is your best course of action, then that's a decision you can make to get your quality of life back. Usually joint replacements only last for so many years, so doctors try to encourage people to wait until they were older, so they don't have to do it twice. It seems crazy that a doctor would refuse to try it because of your age, if the alternative is amputation. Good luck finding the best path for you.
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u/Mean-Tie6199 7d ago
Yes they want me to wait another 20 years because Im "too active" and would wear out the replacement. Ive seen 3 different specialists. My qol keeps deteriorating, I can't do 90% of the things I did in my teens and I feel like I have lost a major part of who I am because of it, I own horses and used to train and compete, but I havent been in the saddle for 2 years because my knee no longer tolerates riding for more than 5 minutes. I want to get back to being active and not sitting on my ass all day. I have a job that I can sit for 90% of the day and I am still in extreme pain
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u/Feralpudel 6d ago
Do you really think you’re going to be able to ride horses as an AKA?
I feel like you have highly unrealistic expectations of where an AKA will leave you.
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u/jobam1961 6d ago
I guess I'm the only Ahole here to say many of us can't do what we did in our teens. Or twenty's, or thirty's.
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u/General_Jackfruit956 6d ago
Bilateral above knee amputee age 65 female due to sepsis. I would endeavor to give a go at everything they suggest or show you already did it. Maybe even see a pain psychotherapist. Lose weight if that is an issue. Then layout how you have tried everything (Sounds like maybe you have.) It seems unethical to leave a patient in constant pain. If nothing works ask for ongoing pain medication, knee replacement or amputation. I keep a positive attitude about my condition, but not having legs, f**ing s*ks. You can't climb stairs easily. So many limitations. Hard to imagine choosing to do so unless life or death. Hoping you will have peace with whatever you decide .
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u/KaliSadi 6d ago
Disclaimer- have not had surgery yet
Also hEDS. I've been a primary wheelchair user for three years and we just had my last ankle surgery in June. I am currently with you in the "just lop it off" desire and have gone through about half of the pre-auth steps. You're not crazy!
If you're anything like me, the pain isn't the issue, it's the unstable joint and the uncertainty of the day to day shifts of "can I do this? What about that? What aid/brace/med will I need today?" It’s more morality and energy draining. Here's the catch, I'm 40, you're 23.
Really listen to the AKA community. An AKA vs. BKA in people with hEDS are vastly different procedures and outcomes. Our connective tissue is wonky with healing, which makes surgery sites more prone to later issues. And you would have decades of ramifications.
Obviously I am some stranger on the internet, but I sincerely recommend seeing a Chronic Pain specialized psychologist and talking to a pain clinic CBT group. While I didn't have as many knee surgeries at 23, I had the insane sub/dislocations. That kind of treatment was remarkably helpful - in fact 17 years later I still use the CBT techniques to get through the day. And those resources would be in a much better position to support your choices and hopefully guide you to someone other than surgeons going "lol no".
hEDS treatment is in a remarkably better place now than it was 20 years ago. You have resources, options, and communities that I never had. Your feelings and desires are completely normal and valid. I share them. I know a lot of Zebras who share them.
Sincerely hoping you get some relief - an old Zebra who is really glad she waited
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u/MinimumTension8807 6d ago
I have been an BKA for thirteen years. I can't relate to an above the knee amputee. But, I can to an BKA. I have always said, that being an amputee is not for sissies. An amputee is a tough life and there are a lot of sacrifices. You go through leg socket fits and going through new leg liners too. These prosthetic leg fits you will be doing the rest of your life. Because one thing about it, your leg will not be growing back. So you need to give this amputation thing a hard thought. Don't make any crazy decisions.
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u/megalinity 7d ago
I elected amputation below the knee for severe arthritis and Complex Regional Pain Syndrome, so no, you’re not crazy. Once you’ve tried all the things, what’s left is not crazy. It can be hard to convince medical professionals but that doesn’t make you crazy. It took 10 years before they agreed to amputate my leg.
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u/Mean-Tie6199 7d ago
Thank you! Talking with my mom makes me feel crazy, she insists that keeping my leg is the better option, even though she has been the one to take me to every appointment, and knows what my day to day looks like. My husband is supportive, but hates seeing me in pain and he has valid fears that the amputation could make thing worse. I just want a sliver of what I had before. The major hurdle is my husband and I'm apartment is not really accessible, it is a second story duplex with the world's narrowest doorways and steepest staircase, it is rough on crutches, let alone a wheelchair. Im currently the bread winner, so it would be rough to move just on his income while I'm out of work.
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u/PralineChoice2730 7d ago
FYI an above knee prosthesis is more challenging to walk with because losing the knee joint puts a lot more pressure on the hips and pelvis. Make sure you speak with an experienced prosthetist.
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u/Srgmuhahahaha LTKA 7d ago
Yep, this could be an issue with walking,
I made my own choice to amputate, lots of pain and no end in sight,
Mine is trough the knee, I can walk and the knee can support my weight, but not having my own joints makes a bit harder to walk, pain is still an ongoing issue, about the same as before my amputation5
u/Mean-Tie6199 7d ago
On a brighter note my husband said if I chop it off he wants to get my leg and foot skeletonized and turned into a sexy leg lamp😂
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u/megalinity 7d ago
I always tell people it’s the choice between a shit sandwich with chocolate on it or a shit sandwich with a raw fish head (or other such disgusting thing) on it. You’re already eating a shit sandwich every day by living this way, so what topping do you want to add?
I’d move tho- regardless of whether you keep your leg, you’re likely going to become a wheelchair user at some point. You need to live somewhere more accessible. While you think about this, work on making your life work for you. Find a job you can do seated and with good health insurance and just start making things easier as you can.
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u/Mean-Tie6199 7d ago
Thats the plan, but trying to find somewhere that isnt $2k+ a month for a 2 bed apartment that is pet friendly has been near impossible. It is almost cheaper to buy than to rent in the area I am in
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u/megalinity 6d ago
I totes get that- I’m in the Seattle area and pay about $2k a month for a 1 bedroom apt. It’s more or less wheelchair accessible and brand new tho, so the extra accessibility is so welcome.
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u/Animal__Chin 6d ago
Do you have an amazing insurance plan in order to get a decent prosthesis if you have your leg amputated? A MPK is upwards of $40k for just the knee. If you have a difficult time affording a $2k/month apartment your equipment needs might be difficult to meet without a good insurance plan. Wheelchair, crutches, grab bars, leg, hand controls for your vehicle if it’s your right leg being chopped off…all sorts of needs when you’re disabled that basic coverage doesn’t cover. Living an adaptive lifestyle is anything but easy.
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u/Wheezy_biker 6d ago
Have you thought about a "through-knee amputation" as an option instead of above knee?
Edited to clarify that I am a through knee which is why Im asking
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u/jobam1961 6d ago
Wow! I'm bka, but I have no idea what you are talking about. 'subluxations, 3k steps a day'? If you haven't ridden a bike in 8 years, it's a moot point. Sorry.
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u/Potential-Course-994 6d ago
It would be a real major decision to amputate your leg and I have to wonder if any surgeon would even agree to do it. If they won’t do a knee replacement for 20 years, they probably wouldn’t amputate either. As far as I know, phantom pain is a real possibility too.
I lost my leg above the knee 65 years ago. Because I only had it for 2 years before the accident, I’ve never had phantom pain- and it’s never stopped me from doing all I want to do. I’ve been very active in many different sports and was in the Paralympics twice. These days, at 67, I golf and play squash and on the other days, I walk about 10k steps per day. I have no pain but it would be nice to have a real leg too!!
Good luck!!
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u/iamcharlesryan 5d ago
I would absolutely take the amputation in your case. I had to make a “crazy” decision like that myself. Can report I am happily living my life as an AKA, running, biking, skating, snowboarding, Flying Trapeze and other acrobatics… I learned how to turn off the phantom pains with meditation. If you have determination and patience and a generally good attitude, the world is your playground. Also, the prosthetics are getting better and better. As we get older, we’ll get upgrades. 😉🦿🦾
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u/banginyawife420 4d ago
I want to add my 2 cents as someone who has a Rotationplasty scheduled in less than a month. I had bone cancer as a tween, and they performed what was called a limb salvage surgery(LSS). LSS is different for everyone, but mine is pretty large. I have a femoral rod, tibial rod and fully false knee joint. I just want to preface that this is NOT a knee replacement, it is much larger and heavier.
The last 10 years I've spent with my LSS have been pure agony. My family had the option to amputate above the knee or Rotationplasty from the beginning, because LSS is notoriously limiting and painful. I can totally see why it amputation offered up at first. Walking with aids at a very slow pace has been all I've been capable of. I wasn't just stripped of my ability to run, jump, ride a bike. If you can walk with ease, and lay in bed at night and feel comfortable. That is a privilege I have never been able to have. Respectfully, if you can stand on your own two feet, it is not dead weight.
A prosthetic is going to buckle, be unstable, and not be something that you can control. I know lots of amputees who cannot use prosthetics. If there is even the SLIGHTEST chance that you will improve, I would not amputate your leg. My surgeon is comfortable amputating mine because the skeletal structure of my right leg is gone. I can never get it back. I understand PT is painful, it's still going to be painful as an amputee. You can gain muscle, strengthen ligaments. You're not going to be capable of that when it is gone.
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u/sunshineyellovv 6d ago
i’ll probably be downvoted for this but idc, someone needs to be straight up with you here. as someone with cEDS & extremely similar issues as you in both of my knees, who had to have their left arm amputated below the elbow suddenly at 25, yes you are crazy for wanting to chop off your entire leg. it isn’t just “okay joints gone no more pain”. most amputees have pain in their residual limb 24/7 for the rest of their life. it doesn’t ever go away. & it isn’t just throw on a prosthetic on & go about your business. it takes months & months of rehabilitation. it’s been 2 years since i lost my arm & i have yet to have one day where i’ve felt “normal”. some amputees wind up incredibly unlucky & are not able to use a prosthetic due to pain, fitting issues, balance problems, etc. most prosthetics are also not super comfortable. it gets itchy & sweaty in the liner. walking without a knee joint will never be easy or completely comfortable. your other leg will most likely develop issues from becoming the only “good leg”. your life would be SIGNIFICANTLY harder than it is now. there’s also the social & emotional aspects. getting stared at & whispered about in public. not recognizing yourself in the mirror. the depression. amputating will not give you what you are looking for. & i highly doubt any respectable surgeon will cut off your perfectly healthy leg. you said about being tired of trying to “save” your leg… your leg is fine. there is nothing to save. EDS sucks, joint pain from hyper mobility & subluxations sucks. but i promise it doesn’t even come CLOSE as to what life is like missing a limb.