Wondering whether to cut off my foot
September 28, 2020 2:12 PM   Subscribe

Should I get a below-the-knee amputation and a prosthetic limb?

I have had an internal blood clotting issue for many years that had been adequately managed with blood thinners. In late 2018, however, I began to have pain in the big toe on my right foot. Blood wasn’t getting to that toe. It turned blue and was dying, so doctors eventually amputated it. I recovered, but blood flow issues continued to trouble that foot. I had more amputations. My underlying condition was diagnosed as lupus.

For my most recent amputation in March 2020, surgeons removed the front half of my right foot, including any remaining toes. They expected me to recover in a month or two and to eventually walk again with an insert in my shoe. But it’s been more than six months since that procedure, and I haven’t recovered. A persistent wound on the front part of the foot-remainder changes in shape and size but never heals. Aside from the wound, the foot in general is always painful and sore, maybe from poor blood flow or maybe from lack of use or both.

Since that last amputation, the main surgeon, whom I see once a week, has tried many different products and ointments to get the wound to heal. Nothing has worked. I have an "extreme case."

Except for a brief period of improvement more than a year ago, it's been almost two years since I've walked. I get around with crutches or a wheelchair and use this thing around the house. And when on crutches, I only get a minute or two at a time before I have to sit down to rest and elevate my foot. I’m always in pain and have become inured to OxyContin.

My quality of life is poor because many basic things are so difficult. It’s hard for me to cook, straighten up, play with my kids, or even get from one room to another. Driving short distances is difficult. The pain makes for restless sleep. I used to love to exercise, go bike riding, or go for walks. I can’t do anything physical now. My weight has dropped from 160 to 130 pounds. Did I mention that I’m in pain all the time?

Currently, the surgeon is trying a new product on my foot. It will take a few weeks or months to start showing results. I'm willing to give it a shot, but frankly, I have low confidence it will work. These days, I’m not only running out of patience. I’m running out of time. My marriage is winding down, and I’ve been unemployed too long. I’m in my late 40’s and really need to get back on my feet again, so to speak.

All this background brings me to the question: Should I get my foot amputated?

In my situation, the next amputation wouldn’t be incremental anymore. Doctors would take off my leg below the knee, and then I’d get a prosthetic for the lower leg, ankle, and foot. (For what it’s worth, I have decent health insurance for now and believe at least most of the cost would be covered.)

What might life be like with such a prosthetic? Will I be able to resume normal activities? Would I be able to get fit again? What’s it like to maintain a prosthetic? Do they wear out? How much might I regret losing my lower leg?

My general practitioner, physical therapist, as well as a surgeon I went to for a second opinion all floated the idea of an amputation as a way to improve my quality of life. My main surgeon, however, is reluctant to do the procedure and wants to keep trying to heal my foot. One worry is that his current treatment plan might show just enough progress to give me hope of recovery, but my ordeal still will drag on and on.

If I do want to get an amputation, how do I decide when to finally take the plunge? Would I try to convince my reluctant surgeon to do the procedure, or should I find a new surgeon? I understand it's my choice, but it would feel weird shopping around for such a service.

No one can of course make such a decision for me, but I’d appreciate any insights into how to make this decision and things to consider about potentially living with a prosthetic lower leg and foot.
posted by Leontine to Health & Fitness (13 answers total)
 
I recently read a long & fascinating news story about a female military veteran with a longstanding leg wound, after being injured in combat, who finally decided on a voluntary amputation for reasons similar to yours. She is pleased with her outcome so far. I just can't find the article right now but I'm posting this in case it jogs someone else's memory.
posted by BlahLaLa at 2:30 PM on September 28, 2020


Found the article - here you go. (NYTimes.com)
posted by BlahLaLa at 2:32 PM on September 28, 2020 [4 favorites]


Best answer: You've already been through multiple amputations and you already know how rough that is, so you are the best person to know about how the current state of affairs is impacting you, and about what it's like to go through an amputation. You might want to get a second opinion or three now, and see what other doctors think about your situation and options.

For whatever it's worth from a stranger, I'd say to let the doctor try the current treatment, but set some goalposts: decide on a time period within which you need to be able to do certain things and have a certain quality of life, and if that goal isn't met, then get serious about doing the amputation.

I also do not think it's weird at all to shop around for a doctor who is comfortable doing the amputation. In fact, I think you should absolutely do this - see some people, get recommendations, find someone you are comfortable with. Ideally you want a doctor who has done a lot of amputations with good outcomes. It's normal to shop around for all kinds of medical procedures, and it's much better to make an informed choice to stay with your current doctor (or not) than to do it by default.

I wish you the best and I hope that you get your quality of life back, regardless of how much of your foot you keep.
posted by bile and syntax at 3:07 PM on September 28, 2020 [4 favorites]


I'll just pass along something someone I know told me about a year ago when he was deciding whether or not to have his lower leg amputated. The doctor told him that without amputation, the best he would have, after multiple surgeries, was the ability to walk at a moderate pace, but no running or jumping. But this guy wanted to play basketball and stay active, which he would be able to do with a prosthesis. So he decided to go with amputation. So maybe some conversations like this with your doctor are in order. How can you have the best quality of life?
posted by swheatie at 3:32 PM on September 28, 2020 [1 favorite]


Are you confident that the wound from the below-the-knee amputation will heal effectively? I'm guessing that a substantially bigger amputation is being considered because it is more likely to heal but it would be as well to be sure.

Another questions to consider is, what is the downside of the amputation? As you've written the question I can see that your surgeon wants to pursue the existing treatment plan but you haven't described any advantages to doing so. If the wound healed what would you have that you would lose with the amputation?

I think things like recovering your fitness and resuming normal activities are likely to depend on how well the wound heals, and your underlying health than anything else. This is something that you should be able to get some information on from your healthcare providers.
posted by plonkee at 3:45 PM on September 28, 2020 [4 favorites]


I shattered my heel in 2011 and for a short time it was iffy whether I'd get to keep the foot. Even now, any small injury takes an inordinate amount of time to heal. I nicked my heel shaving in August (really! minor!), and two months of limping and blood tests and xrays later, it wasn't anything like a bone infection, but demonstrated the danger for me of even a heel nick.

In summer, reading about bone infection, I read a case where a young woman started jogging to lose pregnancy weight, and a cortisone shot for planter fasciitis turned into a two year saga of bone infection, cellulitis, cdiff, etc. She turned down an amputation. Eventually healed, but shows how even the simplest of stuff can lead to the saga and thoughts you're having.

I think what I'd ask is about the average outcome, and best-case and worst-case scenarios. I often wonder whether 100% of amputees get to walk again and that's the expected outcome, or whether it's much lower, and most people actually struggle, and that wouldn't be a huge improvement from getting yours to heal eventually. What's the average degree of mobility, are most people just barely walking or do -most- of them get to maybe hike and run and bike? What's the average pain level after amputation?

I also wonder about systemic effects with drastically altered circulation and load on your heart, and eventually aging. Is there an expected reduction in lifespan?

And aside from the expected outcome, what are the complications likely from your clotting issue?

I'm glad you asked here - keep asking in other places. Maybe like a runners' forum. I'd definitely get second and third and nth opinions from docs. Also, ask PTs and nurses who the good docs are. They know.

The thing is, and you don't need me to tell you this, it's a bell you can't un-ring. If something goes badly and you can't walk for some reason, there's nothing left. I'd lean against it for that reason, but I've had the luxury of time fading my long-term pain.

I'll be thinking of you.
posted by Dashy at 3:58 PM on September 28, 2020 [2 favorites]


I have a prosthetic leg (below the knee). It is no big deal. Above the knee is a different story. I certainly could be athletic, but I'm just not an athletic person.
posted by 8603 at 4:11 PM on September 28, 2020 [6 favorites]


Best answer: The only part of it that requires maintenance per se is the outside cover, which gets beat up. There is like a silicone sleeve that attaches to my actual leg that I wash in the shower and replace every year and a half or two years. The leg itself lasts indefinitely. My favorite leg I had for more than fifteen years.

This non-healing wound, however, is very concerning. I don't know what to say to that. All I can tell you is that the leg itself is no trouble.
posted by 8603 at 4:17 PM on September 28, 2020 [3 favorites]


I mean, there definitely aren't any guarantees of success. The non-healing wound, first of all, is concerning, and I would be concerned that this will happen again, but worse, if you had the entire leg amputated. There is also the possibility of residual nerve pain that could make wearing a prosthetic painful, sometimes in a way that is intolerable. It takes time an work to desensitize the area. Phantom limb pain is real and can be very painful, though that's more common in traumatic amputations.

With that said, the quality of prosthetic limbs has improved substantially. Many people go through amputations and go on to live full, athletic lives. It is definitely a possibility and I wouldn't write it off, but I would get AT LEAST one more opinion before making such a huge decision. If your other wounds have had THIS much trouble healing, I would be concered that you'll only have more trouble with a more major amputation.

Good luck - this is tough.
posted by Amy93 at 6:48 PM on September 28, 2020


Have you consulted a hematologist about the clotting situation and how that might affect your surgery/recovery or a wound care specialist outside of this surgeon's office? There are so many reasons that wounds can be slow healing - has he cultured it, tried different types of dressings, a wound vac? Do you have other health concerns that need to be addressed (diabetes, heart, thyroid, etc.)?

If you're on any sort of thinners, just that, alone, is an issue that needs to be addressed before additional surgery (would you need to provide autologous donations?). Also, what kind of prosthetic is your insurance willing to cover - just basic, looks like a leg, or a cool bionic looking one. And more specifically, what's the learning curve.

Given your documented history with your previous surgeries, it's got to be somewhat of an assumption that it's not going to be a quick recovery. How is this going to affect your mobility within your home (are you going to require a wheelchair for a while?), how does the timing affect your kids' school situation, do you have a dependable caregiver for transportation, etc. Have you looked into SSDI?

I am SO sorry that you're dealing with this. I have the great fortune of two incredibly fucked up ankles and have ruptured both Achilles tendons due to degenerative joint diseases. One ankle is up to four surgeries at this point. The pain sucks, but the inconvenience is worse. I think the hardest part of all is just admitting that you're waving the white flag. It really signified a huge personal defeat for me (sorry, no pun intended).

Go for those consultations, maybe see if you can chat up some other recent amputees. I would absolutely go and talk to whoever it is that manufactures them in your neck of the woods - find out how long after surgery you would have to wait before you can start walking again, etc. What about driving? Carrying stuff? Will you need a cane or crutches until you're entirely healed? I bet they could answer a lot of questions for you.

Best of luck to you. Sending warm hugs.


Oh, and I have that iWalk thing - it sucks balls!
posted by dancinglamb at 2:45 AM on September 29, 2020


I would get a 2nd opinion. I'd try to find a would care specialist. Would oxygen serum for the would, or oxygen supplementation by mask help the wound heal?
posted by theora55 at 6:27 AM on September 29, 2020 [2 favorites]


Definitely ask all of your questions to your medical team! Your surgeon should be able to put you in touch with a prosthetist and also peer support - someone who's undergone the same procedure and has the same prosthesis you would be getting and can tell you about their experience. The biggest issue is whether you have enough blood supply to your lower leg for the wound to heal.

In general, after the amputation you would first need to let the wound heal (there will be sutures), and work on reducing the swelling through compression, de-sensitizing the skin, keeping the skin mobile, and keeping your knee moving. Insurance determines the "level" of prosthesis you will receive, which is based on how functional you are without the prosthesis (can you stand, transfer, hop, etc.) For example, a K2 prosthesis lets you walk normally in the community (level terrain, up curbs/ramps/stairs, etc.), whereas a K3 prosthesis lets you do more things like walk over uneven terrain, run, play sports, etc. It's possible to go up in K level, although there's a question of how many different devices your insurance will pay for in a certain time period.

Then the prosthetist will do several rounds of fitting before ordering the final prosthesis. Once you get the socket, there's a very strict wear schedule to prevent any wounds (as you've seen), but you eventually work up to wearing the prosthesis all day and work on gait training/any fit issues with the prosthetist and PT. In my (limited) experience, most people adapt super quickly to walking with a below knee prosthesis (the knee is tricky!), but the timeline can be affected by skin/healing issues, as well as swelling/volume issues that mean the limb doesn't fit the socket well.
posted by autolykos at 7:49 AM on September 29, 2020 [2 favorites]


sorry, 2 woulds should be wounds. Good luck; it's a miserable choice.
posted by theora55 at 4:22 PM on September 29, 2020


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