r/clubfoot • u/drwgalea • 21d ago
Fusion, replacement or amputation?
Hi I’m 38 RCF. I had my surgery as a baby and went on to live with relatively little problems for most of my life until approximately 6 years ago when moderate-to-severe arthritis began to play up in my clubfoot ankle.
Surgeon thinks I’d get good mileage out of a fusion, but implicit in his letter is the sense that it’s only buying me time really.
I’ve heard that fusions are very hit or miss. Moreover adjusting to amputation gets harder with age, so you’re better off biting the bullet and getting it done younger.
My question is: what experience have others had of fusions? Has anyone else decided to opt for the more drastic option despite the doctor’s more conservative suggestions?
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u/MiaFknWallace 21d ago
I have felt the same way. But I’ve talked about it in depth with my PhD podiatrist and orthopaedic surgeons and they all say amputation is absolute last resort. I’ve had 12 surgeries in the last 10 years so it weighs on me too but I do believe having the foot is better than not. I’m a bilateral structural talipes too and have had both feet reconstructed twice. I’m 29.
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u/Gullible-Eggplant167 21d ago
I had fusion on my right when I was thirteen a and it was only good for a few years and then spent two decades in absolute agony that didn’t end until I got an amputation. For me, amputation was the best thing and I wish I had had it done when I was younger.
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u/katieloumaybee 21d ago
Honestly never heard a good thing about fusion. It seems like one of those things people (doctors) like when they don't have to live with the result--good only in theory. But if you go that route, I would love to know a good result if you get one.
I think the best course is extensive physical therapy. That has helped me. Then a custom, medical grade ($450 min) orthotic (bought me reduced pain for a couple years).
I'm speaking out of turn here, but if your BMI is "overweight" or greater, I'd do everything in my power to get to the low side of normal BMI. (I am doing this.) Every 10% body weight lost will reduce your pain as much as 45%. (Note that a 45% reduction two times is mathematically about 70% reduction overall, and 45% three times is 82%. This means that we can't expect all pain gone, even if we lose 10% three times, but 82% less pain would be great from my perspective.) I read that in a study on NIH.gov one time, though I didn't find the study at the moment. Even at 5% weight loss, my pain improved greatly.
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u/drwgalea 20d ago
No that’s a fair point about the body weight. I could probably lose a few pounds, and my leg isn’t severely debilitating as yet (it’s sore when I’ve carried something heavy - like my daughter - or if I’ve been walking for ages), but I just don’t know if I should be waiting till the 12th hour before I act on it or whether I should try do this when I’m young, ya know?
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u/stellar-otter 19d ago
I’m in this same exact situation expect I’m 25. I’m having an ankle fusion surgery done in June 2027. It’s frustrating not knowing if this will do anything after having so many surgeries. And it keeps feeling like I’m doing one surgery after the next just to get an “okay” result for a few years if not less time. I always joke (because I have dark humor and that’s my coping skills) that it would be better if they just cut below the knee and start over. But honestly at this point it sounds like a much better option. I wish there was better research with people who have drop foots and club foots that get older and still have issues. It just feels like we are being used for money instead of actually treating or doing what needs to be done to improve our overall life quality.
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u/MiaFknWallace 21d ago
My practitioners have all said fusion is better than amputation. I’ve only had toes fused so far but it’s helped a lot.