Amputation

[fatelk]

<ADDED: zombie thread alert! Update at the end, for anyone that remembers this thread from a couple years ago.>


Any prosthetic foot experts here? Amputees?

My wife has suffered through several surgeries and years of pain and trouble. She's essentially disabled because of it, and the only options at this point are 1. full fusion of the ankle (sounds terrible, one joint is already fused), 2. ankle joint replacement (Dr. says she's too young, because they only last a few years before needing replaced again), and 3. amputation and prosthetic foot. As frustrating and painful as the whole process has been, she's about ready to just cut the darn thing off. The Dr. says he can't recommend that because it's a drastic step, but he won't recommend anything else either, and we can't go on like this.

[lefty o]

im not a person with an amputation, but understand the problems. i have no cartillidge in either wrists, and the doctors only answer is to fuse them. in my case, not going to happen until i absolutely cant take it any more. if i were in your wifes shoes, if the pain has become unbearable i think i would opt for fusing the joint first. if that doesnt work well, you can always amputate later and get a prosthetic. if you amputate first, there is no going back. i would also seek out a few different docs before taking any of those steps. just my thoughts, but life altering decisions are tough to make.

[Chad5005]

wow,i hate to hear this for your wife,none of the procedures sound good at all,i hope she gets better without amputation but if not the good thing is they heal pretty quick,about 6 week,im missing my left leg below the knee and my right leg at my pelvis from complication from a accident

[NyFirefighter357]

I'm sorry to hear about your wife. My wife is 47 and suffers from lupus, rheumatoid arthritis as well as having a problem loosing strength in her legs. Amputation seems a little drastic but it may be the right solution for her. From what I read the progression is fusion then replacement and I guess the last ditch effort amputation. I would also seek a second opinion. This is a link to the Mayo Clinic Q and A: Considering ankle replacement surgery: https://newsnetwork.mayoclinic.org/d...ement-surgery/

[Reddirt62]

You didn't post the underlying cause but, after suffering from Charcot foot in my right ankle for two years and two attempts at fusion i had it amputated, not a single moment of regret.

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[ThomR]

There has been a lot of progress in the world of prosthetics in the last few years. If your wife does go ahead with amputation she will probably end up being much happier.

This lady has two prosthetic legs.


Prosthetic ankle.

[fatelk]

Thanks everyone. Her ankle was busted up in an accident as a kid. Decades later a rare tumor grew in an ankle joint. They removed the tumor but eventually had to fuse the joint.

Now, six years and multiple surgeries later, it still hurts and swells if she's on it much at all. She's had xrays and MRIs and they say they can't find anything wrong. The Dr. now thinks that maybe the other joints are being stressed and irritated due to the one being fused, so he says he can fuse them all. She hates the current fusion and lack of motion so much that that idea is a flat-out no-go. It's a terrible, terrible idea. Imagine your ankle being fused solid, never being able to move it at all. Personally I'd rather have a prosthetic than even think about doing that.

The joint replacement might work, if his theory about what's wrong is correct, but even then it's a guarantee that they'll just have to do it again within a few years.

Long story short, she's been through so much, year after year, maybe this will work, let's try that, another surgery, more pain and recovery, more crazy high hospital bills. We're tired of it all, and she's worn out. We've heard several people over the years ssay that they've gone through similar experiences with a foot, and eventually got an amputation and prosthetic foot, and it was the best thing they ever did, that they got their life back.

She's tried everything, from significant weight loss (helped some), to various vitamins/supplements/oils (helped some). Even had someone insisting that she needs to smoke pot for the pain (NOT going to happen. I hate how potheads think their stupid weed will fix everything).

Chopping off a body part seems pretty drastic, but at this point it's actually tempting. She's tired of the disabling, constant pain, and she wants her life back.

[ThomR]

I wonder if there is a prosthetic she could wear that would take the pressure off of the ankle.
Maybe something like this would work.

[Reddirt62]

I completely understand. For me there was really only two difficult aspects of amputation. Making the decision and the time between having it done and getting my first leg. You may want to join some of the wonderful facebook support pages and/or contact Amputee Coalition to help with making a decision. Blessings!!

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[fatelk]

I wonder if there is a prosthetic she could wear that would take the pressure off of the ankle.
Maybe something like this would work.

The doctor mentioned a brace of some sort that might help (sounds like the one in your photo), but he said it's not something covered by insurance, and they cost $17,000. Might as well be a million.

We've already spent many thousands on medical this year and it's about broke us. In fact we've almost met the very high out-of-pocket max for the year, so we want to go ahead with anything else we might need this year as soon as possible.

[fatelk]

I completely understand. For me there was really only two difficult aspects of amputation. Making the decision and the time between having it done and getting my first leg. You may want to join some of the wonderful facebook support pages and/or contact Amputee Coalition to help with making a decision. Blessings!!

Thank you, I appreciate that. This is the kind of info she's looking for. As extreme as it seems, we've heard several stories like yours where people say they don't regret it, and none yet from anyone who wishes they hadn't.

She says thinking about having the pain gone and being able to walk every day without worry would be wonderful, but thinking about actually chopping a foot off and having it gone for life is a very difficult thing to get past. I have a suspicion that we're going to be looking at the joint replacement instead in the near future, but that's not a really good option either.

[TXGunNut]

No experience to draw from but aren't artificial joints getting better all the time? Maybe by the time this one is worn out the technology will have improved. OTOH the thought of one joint replacement is bad enough, not sure I'd want to plan on doing it again.

[fatelk]

That's a good thought. We have lots of research to do.

[ThomR]

Skip to like 14:50

[buckwheatpaul]

fatelk, I will add your wife to my prayer list....with that said my better-half had a ankle replacement a year ago this September. She experienced a lot of pain but as the swelling goes down so does the pain...which can last up to a year. Her doctor never said anything about it only lasting a few years as the ankle replacement is screwed to the old ankle bone......One of our members has a fused ankle and just uderwent a knee replacement and I cant speak about how good or how bad those are......Prayers with you and yours....Paul

[MaryB]

If she isn't wearing compression socks she should try them. Helps keep swelling down and that can be a major contributor to the pain.

And artificial joints have come a long ways, last 10-20 years or more...

[wgr]

replace the joint get all the good years out of it she can(my wife did this) then fuse it if it comes to that. this comes from a person my wife that has had 7 joint replacements . fuse a joint is perment

[EDG]

Get 2 or 3 more doctor's opinions from doctors who do not know each other.
If you have to research to find the best doctors who specialize in that joint and that kind of problem.
Even if you have to buy a couple of plane tickets to the Mayo Clinic or the Cleveland clinic you will be able to make a well informed decision.
One of my kids was born with a bit of an ingrown toenail. Her pediatrician thought the entire nail needed to be removed. Within a few weeks it was infected so we took her to a foot doctor. He said that is no problem, I can clip out the corner. There was a little blood and pain but her toe was fixed in about 5 minutes by just clipping the nail. She did have to have it clipped again .....about 30 years later.
Just be cautious before going down a one way street...

Any prosthetic foot experts here? Amputees?

My wife has suffered through several surgeries and years of pain and trouble. She's essentially disabled because of it, and the only options at this point are 1. full fusion of the ankle (sounds terrible, one joint is already fused), 2. ankle joint replacement (Dr. says she's too young, because they only last a few years before needing replaced again), and 3. amputation and prosthetic foot. As frustrating and painful as the whole process has been, she's about ready to just cut the darn thing off. The Dr. says he can't recommend that because it's a drastic step, but he won't recommend anything else either, and we can't go on like this.

Z

[fatelk]

The joint is already fused. A fusion of all the joints seems like a terrible idea. She's way too young to be crippled like that. My understanding is that the option is to replace the currently fused joint with an artificial joint. Even that is just a shot in the dark because the doctor is just guessing that that is what is causing the pain and swelling. She's worried that she could go through all the pain and recovery of yet another surgery to replace the joint, only to find out that the pain is still there. The doctor can't find any clear reason for the pain and swelling, said he's stumped.

It's been suggested that perhaps the tumor caused nerve damage and that could be causing the pain. It seems that the joint replacement is the way to go, but it's a shot in the dark as to whether it will solve the problem, and it's temporary. Hence the temptation to just amputate and be done with it.

If she isn't wearing compression socks she should try them.

Excellent suggestion. She's been wearing them for years. She says they're uncomfortable on hot days but she doesn't dare go a day without them.

[fatelk]

Get 2 or 3 more doctor's opinions from doctors who do not know each other.
If you have to research to find the best doctors who specialize in that joint and that kind of problem.

Another great suggestion. We started with one specialist who was highly recommended who did the surgeries, then we moved, tried another doctor who didn't inspire confidence (told her to just live with it). The current doctor is supposedly the best in the state for this type of problem, and he's stumped. The tumor that destroyed the joint is apparently very rare in the foot and nobody seems to really know what to do. I think I will suggest a visit to yet another doctor.