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/discussion/mayo-clinic-q-and-a-considering-ankle-replacement-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. https://uploads.tapatalk-cdn.com/20180825/e4d20758dc09c428b8e7f30927fcf221.jpg

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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.

https://www.youtube.com/watch?v=JQ0iMulicgg

Prosthetic ankle.

https://www.youtube.com/watch?v=3YLwTJMyoB8

[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.
226122

[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.
226122

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]

https://youtu.be/CDsNZJTWw0w?t=14m55s
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.

[Reddirt62]

One of the problems, as I am sure you know, is the complexity of the ankle joint. It is made up of multiple bones unlike a hip or knee joint. My ankle collapsed and I went thru two very painful attempts at fusion, both of which failed. But I knew that if I didnt try both I would be second guessing my decision to amputate for the rest of my life. Again tough choices none of which come with a guarantee. As far as the videos posted above, the bionics are fantastic but with downsides....#1 they are heavy and #2 they are very expensive, $50k to $100k each. I included pictures of the two fusion attemps. Again much blessings and peace in making the best decision!!https://uploads.tapatalk-cdn.com/20180826/a19436e46de20ccda7c015aa09fe34ad.jpghttps://uploads.tapatalk-cdn.com/20180826/3b3cc49a07361b217302eaa6708297ac.jpg

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[fatelk]

Ouch. Her fusion was successful, in that it fused properly, but they can't figure out where the pain and swelling are coming from.

Good point about the cost. We've heard that both prosthetics and artificial joints are unbelievably expensive, so with our insurance and finances it's likely that neither are a realistic option for us. We have some research to do on that, too. Any which way we do it I expect that we're in for a few more years of pain, both physical and financial. Such is life.

I don't know how true it is, but I did hear recently that they won't do an amputation unless all other options are exhausted, even if those options are lengthy, painful, and unlikely to work.

[Huskerguy]

A lady who used to attend our church and who is a teacher where my wife works was in a terrible accident several years ago. Her foot/leg was pinned in the crash. I can't count how many surgeries she had trying to get things to work right. It would get better and then quit working or a lot of pain. After so much trying she or the doctors said, this isn't going to work and she had a prosthetic foot put on above the ankle. I was in a meeting with her just before school started and totally forgot that she had done that a couple years ago and when she walked and moved around you couldn't tell it at all if would not have had clothes what showed it that day. These experts can do amazing things with the materials they have to work with. Reassure your wife that things will be fine. It has to be tough. I am nearly 65, always active, a former runner and always doing something in sports and that would be traumatic to me but just being able to get around pain free would be a blessing.

[Handloader109]

My wife has surgery about 4 years ago on right ankle to repair tendon. Pain for a year before, and it took a year to heal and pain mainly gone. I would say fusion first or replacement. Amputation would be last.

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[Geezer in NH]

IMHO new doctor team evaluation is needed long be fore amputation.

[fatelk]

I understand how extreme amputation must sound, until you go through year after year of surgery, pain, more pain, another surgery, then more pain and surgeries after that. Continuing pain and never-ending surgeries trying things with a very low likelihood of helping really wears a person down, to where you just want to be done with it.

To be clear, another fusion is completely off the table. Fusing the entire ankle would leave her basically disabled. She's too young for that and we have four young kids to try to keep up with. The current doctor is literally the best ankle specialist in the state, but we will look for some way to get another opinion. Some things are easier said than done though.

I appreciate all the input and advice. We'll get it figured out sooner or later. Hopefully sooner than later.

[MaryB]

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.



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.

Has she seen a vein specialist? She may be having blood flow problems and when it pools in the ankle it can hurt/cause swelling... simple test is push in with your finger then release. If the indent stays she has vein issues...

I wear these, mostly cotton so great for hot weather https://www.amazon.com/MD-Cushion-Compression-KneeHigh-6White10-13/dp/B074QGQN9K/ref=sr_1_fkmr2_2_a_it?ie=UTF8&qid=1535421263&sr=8-2-fkmr2&keywords=plus%2BMD%2Bcompression%2Bsocks%2Bcotton&th=1

[fatelk]

Well, we had a discouraging visit to a specialist today, reputedly the very best around. He's gone over all the records, charts, x-rays, MRIs, etc. It looks like she'll be headed in for yet another surgery very soon, to fuse yet another joint in the ankle. She'll be permanently handicapped, with the one ankle completely frozen unmovable. She's not happy about it, but the other options were even more problematic. She told him to just cut the darn thing off, but he said that comes with it's own long term issues, and should really only be a last resort.

The surgery is one thing, then there's the three month recovery, then there's the bills... I guess I'm feeling a bit sorry for myself too because we have four young kids and I'm going to be working full time plus, and Mr. Mom when I get home. I'm going to need to roll up my sleeves, get over my little pity party, and man up for some really long days (and weeks, and months...)

[ThomR]

If I lived close to you I'd volunteer to come over and help out with anything you needed.

[fatelk]

If I lived close to you I'd volunteer to come over and help out with anything you needed.

Thank you, I appreciate that. We'll be ok. Sometimes life just stinks, but that's just life. Nobody is immune.


Has she seen a vein specialist? She may be having blood flow problems and when it pools in the ankle it can hurt/cause swelling... simple test is push in with your finger then release. If the indent stays she has vein issues...

I wear these, mostly cotton so great for hot weather https://www.amazon.com/MD-Cushion-Co...%2Bcotton&th=1

Mary, I forgot to say thank you for that. I did mention this to her. Apparently it's not the issue, but I do appreciate the suggestion.

[Lloyd Smale]

I had to make the same choice three years ago. After my doctor talked to me about fusion vs joint replacement, joint replacement won hands down. I had my ankle replacement 3 years ago and today cant even tell its a replacement. What the doctor told me was that an ankle fusion is end of the line. once its done theres no going back. You will loose your ability to walk normaly because it will be rigid and that alone will put more stress on your knees and hip. They've come a long ways with ankle replacements in the last few years and he said I could expect a minimum of 10 years and probably 20 out of it without trouble. It then can be replaced or in a worse case senerio still fused. If I were you id get a second opinion from a doctor that does a lot of replacements. Many surgeons will steer you to a fusion because there easier to do and after its done they aren't going to hear flak in the future if it does need replacing. If your knee or hip takes a beating they blame it on your knee or hip not the fact they fused your ankle and your foot is always landing flat footed. My problem was caused by a ankle that was broke in 3 places and wasn't set properly and always gave me trouble. It ended my pain. Now I don't know if your wife has a degenerate disease that will keep making it worse and is just putting off the inevitable amputation but that would SURE be my last resort. If choosing between amputation and a fusion id go with the fusion without a doubt. What ever she chooses I feel for her right now. I lived with agonizing ankle pain for 10 years and a couple weeks after surgery (there is recovery pain and a good amount of it) it was like a light switch got turned off. Ive also had a hip replacement about 6 years ago and will say about the same about it. Now if they could only do a spine replacement id be all set!!

[jmort]

+1 on more doctors' opinions
Sorry to hear this
Will pray for her

[lightman]

Wow, She has been through a lot! And so have you. I would defiantly get another opinion before doing anything permanent. Good Luck with this and please keep us informed.

[fatelk]

Lloyd, that’s interesting to hear. This doctor told her that a replacement would wear out in 5 to 15 years. It could be replaced again but the risk of infection and problems increased each time, and she was too young for that.

She’s had the one joint fused already and it’s the second joint that’s killing her now. He thinks that’s because the first joint is fused and that’s putting stress on that second joint, and his answer is to fuse it too. Her hip is already bothering her from the first fusion.

The frustrating thing is that this doctor is the third one she’s seen. He’s supposed to be the best in the state, a specialist and professor. We just can’t up and travel around the country to another doctor in another state somewhere; that just wouldn’t work for us for several reasons.

[725]

thoughts & prayers

[MaryB]

Fusion is last ditch... as mentioned as she is experiencing it causes problems in other joints... why I haven't had my low back fused...

[CSMR]

I know men still on active duty with leg amputations...it is not what it once was.... they are as active and effective as their counterparts in Special Forces....

[fatelk]

Thanks everyone. I've talked her into making a trip for a consultation with the first specialist she saw years ago, to get another opinion before going ahead with anything.

The other issue is getting going with doing whatever we need to do, before the end of the year. We've had so many medical bills this year already that we've met our $14k out of pocket max. Anything we do this year should cost us very little. Anything next year will cost thousands upon thousands.

[Lloyd Smale]

I guess at my age even if it lasted only 10 years it was well worth it. Once fused your done with it. Nothing else can be done. With a replacement you allways have the option in the future to replace it and if it gets to the point you need it fused you still can. To be honest I don't know how id choose if I was still a young man and had to still work or still raced dirt bikes and snowmobiles. But at my age I about know fusing is just asking for trouble in other joints and I sure as heck aren't letting anyone cut off my leg unless it was the ONLY thing they could do. Ill tell you flat out an ankle replacement isn't some surgery your going to be up and feeling normal in 2 weeks. It was a much tougher road then any of my back surgerys or my hip replacement were. You have to keep in mind that every step you take all day long pounds on your ankle. It will take months not days to be really back to being comfortable. But it was well worth it to me. Before it I couldn't walk a block. today I can walk a couple miles. cant jog but who the heck wants to do that anyway. I know that if it does wear out in 10 years and they can redo it instead of fusing ill happily lay on that table.
Lloyd, that’s interesting to hear. This doctor told her that a replacement would wear out in 5 to 15 years. It could be replaced again but the risk of infection and problems increased each time, and she was too young for that.

She’s had the one joint fused already and it’s the second joint that’s killing her now. He thinks that’s because the first joint is fused and that’s putting stress on that second joint, and his answer is to fuse it too. Her hip is already bothering her from the first fusion.

The frustrating thing is that this doctor is the third one she’s seen. He’s supposed to be the best in the state, a specialist and professor. We just can’t up and travel around the country to another doctor in another state somewhere; that just wouldn’t work for us for several reasons.

[fatelk]

Well, she's scheduled for a joint replacement next week. Right, wrong, or in-between, it's worth a try. Any of you all who are the praying type...

[Handloader109]

Good luck and prayers for fast recovery. Keep us updated.... my so is headed down similar path, if knees dont get her first.

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[lightman]

Well, she's scheduled for a joint replacement next week. Right, wrong, or in-between, it's worth a try. Any of you all who are the praying type...

You and Her have them. Hope its successful.

[Reddirt62]

Much blessings!!

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[fatelk]

For those of you interested in some resolution: she just had her six-week checkup after the surgery. Everything went very well and is healing nicely. She can start to put a little weight on it but it's going to take months before it's anything close to back to normal.

The good news is that the doctor was impressed, no actually shocked, with the range of motion she has already. He said he had never seen that much motion in an ankle after a "fusion take-down", and he's an experienced specialist who has done a lot of them. We're cautiously optimistic that was the fix, but only time will tell.

Thanks again everyone!

[popper]

Friend just got the ankle fused, recovering now. Football is hard on everything. Prayers she does well.

[lightman]

I'm glad your Wife is doing well. You had some tough decisions to make.

[fatelk]

I know this is an old thread, but I thought I'd add an update. We're headed into surgery again for another fusion in a couple days. The joint replacement was successful, but the other joint was apparently just too damaged, and she's back to constant pain again.

[fatelk]

I just don't know what to do. My dad passed away last night, and I need to make a trip to the midwest to be there for my mom. The surgery (that was already postponed due to covid) will need to be postponed again.

[bedbugbilly]

I am a day late and a dollar short on this thread - but will post my recent experiences. It might help those who possibly face the same thing.

I have been a Type I diabetic for 53 years - have gone through it all - diabetic retinopathy with extensive laser surgery in both eyes, heart attack and by-pass surgery, neuropathy in both lower legs. I have worn lower leg braces for probably about 13 years. Anyway . . .

I started having problems with my left ankle about march - over the years I have had several challenges with infections from blisters in both feet requiring long bouts on IVs to get healed up and some infected bone removal as well in both feet. My ankle basically "blew out" - dislocated to the outside of my left leg and foot turned under to the inside of my leg. I could not walk and of course, with the
Covid 19 virus picking up, I had difficulty even getting in to see a foot/anle surgeon. Fortunately, I was able to see one after explaining the severity of the problem. Had to wait a couple fo days but when I saw him, he took one look and told me I had to have it fixed ASAP or run the risk of the dislocated ankle poking through the skin with an almost certain infection ifi it did. If it got infected he told me I cold lose the leg or worse case scenario, die.

So . . I am a pretty realistic individual and I discussed the options of would it be better to just amputate the foot and lower leg or go with the surgery to have the foot, ankle realigned so it wold fuse. He felt based on me individually, that an ankle fusion surgery would be the way to go if it were him.

"Non-essential surgeries" were not being done in Tucson due to Covid - he said I couldn't wait so he had me admitted through the ER of one of the hospitals out here. He wanted me in and out of the hospital as quickly as possible. I went to the ER at 12:00 directly from his office, was admitted and my midnight had my cardiology clearance, kidney clearance, blood work,X-rays and hour long MRI done by midnight. I was scheduled for surgery the next day at 1 p.m. - taken down but did not get into surgery until 5 p.k. - about 2 1/2 hours of surgery and then back to my room.

It may differ for individuals, but for me, a long incision was made on each side of my leg/foot and on the bottom of the heel. The ankle, foot and lower leg bones aligned an then a long titanium spike put in from the heel up through the ankle and into the lower leg bone with numerous screws to hold in place. My Achilles tendon had tightened up due to the length of time that I had the problem with the neuropathy and ankle'foot issue so he had to cut and reattach it which required another incision at the back of the heel.

Because of the neuropathy in the lower leg and not having a lot of "feeling" - they made me take an oxygen pill when I woke up - I did not want it - and I really have no thad ay real pain issues directly after the surgerie or during the recovery. I went home the day after the surgery - foot and ankle well wrapped in dressing and large ace bandage - back to the surgeon a week later - put n a cast - two weeks and back to the surgeon and in to another a cast for two weeks and then graduated to a protecitive "boot".

For those facing this type of ankle fusion surgery - I was told that for a "normal" person recovery is about 10 - 12 weeks. I have had to keep the leg elevated except for getting up to eat bathroom, etc and the leg on a pillow with an ice pack behind the knee to help keep the swelling down - I normally have some edema in the leg as well. With my diabetes / medical history he told me to expect to double the length of time for the recovery. I had the surgery on April 30 today is July 23 and I started to use a walker and put light pressure on the foot about two weeks ago. I still have a ways to go, but the incision have closed and are healing nicely - was able to start taking a shower (using shower stool) about three weeks ago and still use a knee scooter at times. The ankle/foot gets a new gaze/ace bandage wrap after every shower.

Every individual is different, of course. For myself I am glad that I chose to go with the ankle/foot fusion surgery rather than the amputation and a prosthetic leg. For me, I will have no range of motion in the ankle but that is something easily "lived with". I will still have to be very diligent in checking my feet as I alway have - I check them several times a day since with neuropathy, a sore from rubbing can easily get started without me feeling it.

I apologize for the length of this but just wanted to tell my experiences with an ankle/foot fusion surgery as it might help someone else in a similar situation. In my situation, an ankle joint replacement was not an option.