Amputation

[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!!

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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-Co...%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...