"Elective" Below the knee amputation

[jennifer]

Hello.  I am searching for information.  Previously when searching, not here, I have been directed to find a medical team and prosthetist.  I have all of that.  I am 48 years old and had my first surgery on my left ankle post Nordic ski accident at 16, then a second was done.  I was all good for 23 years. No one told me to just cycle and swim, so I hiked small mountains, biked everywhere (even steep inclines), power lifted, and walked, a lot. Then my ankle started acting up.  When the orthopod got in there it was "a mess" and he removed muscle and some tendon and whole lot of useless cartilage.  I was a little better for 5 years.  Then my ankle started acting up again.  Really badly this time, often crawled around the house.  New city meant new orthopod, had a sub talar fusion as well as many "rebuilt" tendons and more debriding of that useless cartilage.  Again a mess (Doctor never puts people in hospital overnight, I was booked for 3 nights).   Recovering from fusion was difficult, getting up and walking again about 4 months later when I feel a pop and a tear when rising from a chair.  Orthopod refuses to believe anything happened, so I find Prosthetist to  make a very large AFO to remove all weight from ankle.  Joint specialist finds that I have subluxed and torn peroneal brevis ( I had longus removed).  Back for surgery, again, and some of the tendons rebuilt are now torn as well with bony overgrowth.  I am about 6 months out from that surgery.  It has been deemed successful as I can bear weight. But I have no strength and must use a mobility scooter to walk dog and cannot perform daily tasks normally.  In fact I have an IWalk on order so I can stop sitting so much.  Doctor now says I will be doing a full fusion or ankle replacement.  I feel I cannot get on this carousel again, not psychologically, not phsically, and I don't want to be laid up anymore for 4-6 months at a time.  I am not too old, and would love to be active.  Speaking with my Prothetistics team it seems I am a great candidate for BKA.  I would just like to hear other "elective" BKA experiences.  Are you happy?  I would just like to stand without pain.  It's a low bar for me.  I know that using a prosthetic uses 25% more energy, I also know I measure every step I take and showering is an event. I go weekly to physio, but still have to use a chairlift for stairs.
I hope this hasn't been TMI, I'm just wanting to paint my picture.
I look forward to hearing back from some people with wisdom to share.  Thank you.

[cherylm]

Hi there, Jennifer, and welcome. I was an elective BK amputee who was HIGHLY pleased with the results of the surgery. I was pain free and reasonably active after years of pain, disability, and failed surgeries. I'm saying "was" because I've since been through a revision to the amputation (which occurred 13 years after the original surgery) and THAT procedure, while necessary, has not been particularly successful. You've certainly been more than patient while going through all of your various complications, and your goals are very reasonable. A BK amputation may well be a good solution for you, but DO think it over and get all the information you can from your prosthetics team and your orthopod before making your final decision.

I never had to deal with a full ankle fusion...I have met some folks who have, and from what I've heard it's not especially easy to live with. The idea of an ankle replacement sounds tempting to me, but I have no background at all there. Has anyone been willing to give you comprehensive information on that front? When your prosthetics team says you're a "great candidate" for a BKA, have they told you precisely why they think that? I'd probably try to sort out those two options and then go with what seems the most promising in your circumstances.

It's true that a BKA uses around 25% more energy in order to move a prosthetic leg, and that will feel like a major challenge in the beginning. But as long as you can commit to working hard at rehab, you'll likely reach the point where you won't notice the weight of the prosthesis. Some parts of amputee life are a bit of a challenge, and until you figure out routines that work for you (like showering) those activities will indeed feel like an "event." But again, you'll eventually get used to that "new normal."

So....main question? I had 13+ really good and happy years as a BKA. I did not regret losing my leg at ALL. I also had a really good length to my residual limb...and that DOES make a BIG difference. If you'd be taking the leg off somewhere in the middle of your calf--at a point where you have plenty of bone and muscle to work as a good "lever" for moving the prosthesis--you have a good opportunity for a happy, active life. When an infection cost me another 5" off my stump, I had a pretty major decrease in my activity/mobility levels. I'm still basically happy...but more than a little frustrated, too. I'm sorry if that sounds like a wishy-washy answer, but that's my experience. I hope it will give you some info as you make up your mind.

Feel free to ask questions...and keep us posted on how you're doing!

[jennifer]

Thank you cherylm! That is actually wonderful information for me! Yes, my prosthetics team and I have had lengthy conversations about why I'd be a good candidate. Mainly attitude and goals I believe. I would like some more years of mobility, and I figure in the worst case, such as you face now, I'd be no worse off than I am currently. I am sorry you are facing that though.
A total ankle replacement is not a real solution as it rarely is effective, is far from perfected, and takes tibia length with every replacement, which is a max of 2 and they last about 10 years. I am 48. That would leave me in best case scenario without as much leeway in residual limb length, and many more years of pain and likely complication. Also the only place that offers it is 4 hours away from my home (orthos don't all agree with it as it is so problematic) and the travel would be hell. My only true option is fusion, but it is so extremely difficult, and I know I cannot psychologicall face another one.
I put off travel dreams to have my family and I would love if I could fulfill some of them. I have spoken with another bka who has travelled and walked in Europe and other places. I'd love to be able to do that.
I know there are risks as a BKA, as you currently face, but there are signifcant risks with a fusion as well. Also given my age I will likely end up as an amputee eventually anyway. I do like to have a little control in my choices.
Has your amputation caused any stress on the adjacent joints leading to needing replacement surgeries sooner?
I hope you can fix any of your current mobility issues, you have my complete empathy. Thank you so much for your reply and sharing your experience!

[cherylm]

Well it sure sounds like you've done your homework! I was 50 when I had my initial amputation and was in "so-so" physical condition at the time. I'd been laid up with a long series of surgeries prior to my amp, and it took me about a year of pretty hard work to get to feeling basically normal again. I've been very lucky over the years as I've had very little pain related to the amputation (although I do have some very occasional "bad leg days.") You do need to be aware of the possibility of phantom pain following an amputation....so if you do go with the surgery, make sure that your surgical team is up-to-date on treating pain before, during, and immediately after your operation.

I have not done a grand European tour (and I sure wish I'd done one before the revision surgery!) But once I was fully rehabbed from the initial amputation, I've done a moderate amount of more localized traveling. I've driven on road trips, taken train journeys, flown all throughout the USA, and taken a variety of boat trips. And I'm a genuine klutz, so if you're at all coordinated you should be able to handle travel nicely. It takes more planning than someone with a full complement of limbs (more stuff to remember to pack, more time to get yourself assembled and disassembled, more careful consideration of how to best allocate your energy) but it can be a lot of fun! I enjoy museums, home and garden tours, photography, theatre and concerts/fairs/festivals, and I've been able to keep up with that sort of thing. I don't do long hikes (or much in the way of short hikes either) any more, but that's more related to my klutziness than the amputation...there are plenty of amps out there who hike, bike, fish, etc. I do swim...a really enjoyable activity for me.

As far as collateral damage on other parts of my body...no joints have needed to be replaced yet, but I have found myself needing to work through occasional minor injuries that I probably wouldn't have suffered if both my legs were present and healthy. The knee on my amputated leg is showing some wear and they would not be able to do a knee replacement if it ever came to that point, because the revision-surgery tibia and fibula are so darned short now. If the knee ever gets really bad, I'd probably need another amputation revision to just take the leg off through the knee. As it is now, I wear a hinged knee brace over my prosthesis to take some strain off the knee and give me a little extra support to make up for the short stump. It works pretty well.

Hope that helps...hang in there!

[jennifer]

Thank you so much for your openness and wisdom CherylM! It means a lot. I keep hearing that this is a huge decision rather than an option, so more information is always better. I have great hope for my one legged future!

[grampy]

Interesting discussion. I am a 61 y/o man. In 1984 I broke my ankle during hand to hand training in the Navy. While still in, I had two surgeries. One in 95 and a 2nd in 2000. Mainly these were for debridement of the joint and cleaning up scar tissue on ligaments, tendons, etc. 9 years later I had my third surgery for the same thing and again 2 or 3 years after that. About 4 years ago I had a surgery that other doctors (that didn't perform the surgery) called swinging for the fences. Subtalar fusion, strayer procedure (lengthening of the Achilles tendon, removal of scar tissue and cleaning out two more arthritic joints. Funny how problems with the ankle make the other foot joints start to go bad. Last year I had my ankle replaced with the latest Zimmer ankle. After surgery, I find out that the latest data shows ankle replacements usually take up to a year before they will get their best. Doctor says that by then most people ask "what ankle?" when asked how it's doing. Research papers I've read say some people can take up to two years before they achieve maximum benefit.

Now, 13 months after replacement, my ankle feels good (except when it swells so much it creates pressure on the joint). But I have arthritis in all the mid foot joints, at the base of my big toe and in some of the other smaller joints. Some days I can barely take a step on it. Doctor says I have bone spurring going on in the first joint forward of the talus. Wants to do another surgery. Thing is, prior to my replacement I entertained the idea of BKA. Doctor talked me out of it to give replacement a try. I'm going to think about things. Maybe try the bone spur removal. But if it's not better by this time next year, I might go the BKA route. The thought of doing so scares me, but I need my life back instead of going to work every day, coming home with a swollen foot and ankle and unable to do anything but elevate it to get the swelling down and alleviate some of the pain. At least if I do it, I'll be able to say I gave keeping it every chance.

As for the replacement, from what I hear most turn out really good. Doctor says I have to understand that the foot was far from pristine before the replacement.