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hannahc410

Newbie - amputation after failed subtalar fusion cant decide

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Hi there

Im new to this sight but I'm desperate for some help or advice! I will give you a brief history.

I am a 25yr old female I was serving out in Iraq back in 2007. I was hit in a mortar attack and suffered various injuries the worst of which was a calcaneal fracture involing the subtalar joint. I had surgery using pins and plates they pieced it back together. I had such bad pain due to the damage to the subtalar joint so went for my first subtalar fusion 1 yr later. This fusion failed and i was left in such bad pain i have been on a cocktail of pain killers ever since. I have also since had 2 further fusion attempts which have both failed and the pain is no better. It has got to the point now where amputation is an option. My GP thinks it6 would be the right decision for me and so does my physio, however my surgeon seems to want to keep trying with these fusion attempts until it works!! I am also thinking that an amputation would now be best for me. All I want is a pain free life with some sort of normality!

I am looking for any and all advice that anyone can offer me ! Im so stuck and really dont know what to do ???

Please help

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Hello Hannah. Welcome to the forum.

The decision to amputate should not come lightly. It is a permanent situation. It seems that you have been through a lot. Pain is not good. Neither is living on a pain killer cocktail. The one thing that makes me want to tell you to go ahead with amputation is the fact that everytime they open you up the docs set you up for life-threatening infections. Surgeons feel that amputation is failure. Very few ankle fusion patients live painfree. That is no reason to keep trying. 3 years is long enough.

A below-the-knee (BK) amputation is the easiest of amputations to overcome. That doesn't mean that it doesn't come with some pain and frustration. We have our good-leg days as well as our bad. It is not cheap either, but since you're a veteran, the VA should cover all medical and prosthetic costs for life.

A person your age should do just fine.

Let me thank you for your service.

Good luck,

Neal

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Surgeons want to do surgery. It's what they've been trained to do, it's their nature to want to "fix" things, and they do, indeed, think of cutting off a limb as a "failure." Three attempts at the fusion, all failures, is enough pain and trouble on your part. The only way I could see attempting another fusion is if they have a radically different procedure they want to try...and even then I'd be doubtful.

My experience is somewhat similar to yours, except that my injury was a fractured tarsal navicular. (And I got it in a much less dangerous manner than you did!) After three failed attempts to repair my fracture, I was presented with the choice of "try it one more time" or amputation. It didn't take me long to decide on losing the foot, and it was a good decision for me. It's not an easy choice, but being a single below-knee amp is quite do-able. And I had significantly less pain even while I was recovering from the amputation. Now, I'm pain-free for the vast majority of my time.

Neal is right...there are "good days" and "bad days," but in most cases even one of my rare "bad days" is an improvement on trying to live with my broken foot.

This is a permanent decision, though, so make sure you've thought it through and feel good about it...attitude is a major factor in how well one does as an amputee, so give yourself the best chance possible for a good adjustment if you do decide to go thte amputation route.

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I am a 4 month below knee amputee. I also went the route of sub-talar fusion without sucess. After 5 years of monkeying with it, it was enough for me. When I started down my path I found numerous other ankle fusion patients that had there fusions fail after about 5 years. So even if you have a sucessful fusion, if your are fairly active the fusions tend to fall apart.

With that said it is a huge change. I read a timeline that I keep reminding myself of: At 4 months you wonder what in the world you did, but you are about where you were pre-surgery. At 6 months you have a mental breakdown but resolve that you can make it work. At 1 year you are glad of your decision and gettting back to most of your activities.

So for me at 4 months I am walking pretty good and getting back to outdoor activities on a limited basis. It is a total pain dealing with the volume changes but they are starting to stabilize. But I look forward to Sept. 2010. Seems very plausible that things will be going great by the end of summer.

Make sure you find a surgeon that specializes in amputations.

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Thank you all so much for your advice. Im in the uk so dont know what costs are covered but I will be doing some research in the coming days and weeks!!! I had a meeting with my gp again today she was saying that amputation is my best decision and that i have given it a fair go but she thinks 3 years is long enough to have tried for too!!! One thing I am worried about is the fact I have put on so much weight in the last three years from being inactive that im worried it might be detrimental to me?? does anyone know?? My doc is gonna write to my surgeon and put my case to him and she is also referring me to a second surgeon for further advice!!! I sort of feel a kind of relief. Amputation means I can finally have an end to all this or rather now there is actually an end in sight rather than a future of more and more and more surgery!! I feel like this may give me my life back!! I just hope it all goes well. does anyone know how long it will take from now till the actual procedure? Im so glad I found this forum and that i have people who can actually understand this !! Im sure there will be bad days but at the moment I feel good about my decision xxx

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hi hannah . neal is right it will be hard for you to make the call i was in the same boat as you i add 13 op befor amp pluss fusion it did not work for me i was in a lot of pain two . so i add it off i am a lbk amp now i have been now for 5 years like they all say you have good days and bad but more good it will get easy for you as you are very young i go to the gym plus ride bikes so i hope this helps you i live in the uk you are coverd by nhs so all the best dave want any info just ask good luck

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forgot to ask is there a amp center near you , you will have to go and have a look

I dont know !! how do I go about finding one? Do you think that will help me? I feel so lost I dont know wher to look for info or where to start!!

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Hannah, I'm in the US, so I don't know the protocol for visiting a limb center in the UK...but DO try your best to meet some amputees in the same situation that you're considering! It will give you a much better perspective of what you're facing and what's possible following amputation.

I've told this story before, but I'll tell it again for you...after my own amputation, I had lots of folks telling me that I'd be "fine" once I got my prosthesis. All of these folks had two legs of their own. I kept telling myself that they were all competent people...surgeons, physical therapists, prosthetists who had much experience working with amputees. But I still had niggling doubts, as I kept thinking "but they don't know from experience...."

On the day of my first trial prosthetic fitting, I rolled into the prosthetist's office and a technician started fitting my first check socket to me. He was up and down and in and out and back and forth, keeping up a stream of talk about what he was doing, how it should feel, and what I should expect. And then, on one of his trips out of my fitting room, he said, "and as an amputee myself, I would suggest that....." and I just went WOW! This guy was active, agile, and not at all what I thought of as an amputee. He made it "real" for me, and I knew that I had every chance of getting my own life back.

Working with this tech was the absolute BEST thing about my rehab. He was willing to share his tips and tricks, he was encouraging, and he was a great example!

Many amputee services offer "peer visitors" to meet with new or prospective amputees... try to take advantage of any "amp contact" you can get!

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Hi Hannah

Just ask as many questions and talk to as many people as you can.

In the UK you will (probably) find a prosthetic centre in most major towns, often on site of the main hospital. They are generally (but not always) part of the DSC (Disablement Services Centre) and, most have Rehab Consultants ... so if you are thinking along the lines of amputation ... you might want to get a referral to one or two Rehab Consultants connected with Prosthetic Centres and get their advice - or to point you to the right people to talk to.

You can usually get a referral through your GP ... or you might even be able to self refer ... give them a ring.

Also as people have already said try and visit a prosthetic centre, ask to look at the prosthesis, especially the type you might be given for the level of amp you think you will have. Talk to new and not so new amputees. Most Centres have User Groups, and peer visiting. Whilst you are at the Centre have a look at notice boards which might have details of User Group events, etc. you could go along to and talk to people.

You could also try and contact the Limbless Association http://www.limbless-association.org (0208 788 1777) they may be able to give a list of User Groups and I believe have their own peer visiting service, as well as give you other information.

You mention you were in the military, so maybe you get some help through them from Headly Court.

Most single b/k's do lead very active lives, however there are no guarantees and sometimes there can be problems, so it is quite a decision and you do need to get the best advice you can.

Ann

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Thank you so much for your help!! I am still in the military and will go through headley court. It is inspirational to meet the people there. It has made me realise that in the great scheme of things this is fine and the right decision for me.

i am going to contact the limbless association and see what I can find out from them. the website is down at the moment but will be up again within a week. Ann are you an amputee? would you give me your story? x

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Hi there

Im new to this sight but I'm desperate for some help or advice! I will give you a brief history.

I am a 25yr old female I was serving out in Iraq back in 2007. I was hit in a mortar attack and suffered various injuries the worst of which was a calcaneal fracture involing the subtalar joint. I had surgery using pins and plates they pieced it back together. I had such bad pain due to the damage to the subtalar joint so went for my first subtalar fusion 1 yr later. This fusion failed and i was left in such bad pain i have been on a cocktail of pain killers ever since. I have also since had 2 further fusion attempts which have both failed and the pain is no better. It has got to the point now where amputation is an option. My GP thinks it6 would be the right decision for me and so does my physio, however my surgeon seems to want to keep trying with these fusion attempts until it works!! I am also thinking that an amputation would now be best for me. All I want is a pain free life with some sort of normality!

I am looking for any and all advice that anyone can offer me ! Im so stuck and really dont know what to do ???

Please help

Is he doing it for his benefit or yours? Get another surgeons opinion before you commit to anything.

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Welcome to the forum Hannah..

Like Cheryl, I am in the US so I really don't have any idea about your amp centers there.

The best piece of information would be to get as informed as you can... (basically the same as everyone else has said). I really didn't have a choice after my accident,, It was watch a failed re-attachement die, or the doc's taking it off.. They chose to remove it.

There are many here from the UK, so please, ask what you need to.. someone will offer an answer.

Welcome...

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Thank you so much for your help!! I am still in the military and will go through headley court. It is inspirational to meet the people there. It has made me realise that in the great scheme of things this is fine and the right decision for me.

i am going to contact the limbless association and see what I can find out from them. the website is down at the moment but will be up again within a week. Ann are you an amputee? would you give me your story? x

yes, i am an amputee Hannah. I will mail you on the message system on here.

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Hi Hannah, I think you've come to the right conclusion by the sound of it. My surgeon carried on for over twenty operations trying to fuse my knee... in hindsight he should have been braver and amputated earlier. It's easy in hindsight and we'll always be able to look back and think about how things might have been different, but as has been said, a single BK should have fewer problems than many. I'm an AK myself and I'm glad my knee fusion didn't work in the end.

Thank you for serving for us all by the way, it's not said enough.

Headley Court is a great place, you'll be fine.

About the weight issue, you will need to take the fit of the socket into account, it's possible you will lose weight when you become more active and you're rid of the pain, though with good prosthetic support this shouldn't be a major problem as your residual limb will take time to settle down anyway. Ideally for good socket fit you will want to stabilise your weight, but that will come in time.

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Hi Hannah,

When I I read your message I said to myself, been there , done that. I was hurt in an auto accident and spent three years in a wheel and on pain meds and then I had had it. Like you my surgeon wanted to try "one more thing" and I said, "no". He said what would I do if he refused to do the surgery. I said I wanted him to do it, but I would find someone else. He finally did it for me it was the best decision I made. I was determined to get back my life and although it was not an easy journey, but I have never looked back. When I saw my surgeon about a year later he was amazed how well I was doing and said we probably done it sooner!

Good luck and I wish you as much success as I had.

Peace, Beth Marie

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thank you all for your msgs! im finding myself really down about it all these last few days !! im laid in bed thinking about stupid things like how i will get in and out a swimming pool, how i will cope on a beach ???? Im only 26 and worried how it will look too !! I still think its the right decision but im just so scared its so life changing. Im still waiting for my next appointment to come through and the waiting is awful !! did anyone find it really hard to adjust?? I think if I had just lost my leg in the accident it would be different but its the fact I have to make the decision thats so hard !!!

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thank you all for your msgs! im finding myself really down about it all these last few days !! im laid in bed thinking about stupid things like how i will get in and out a swimming pool, how i will cope on a beach ???? Im only 26 and worried how it will look too !! I still think its the right decision but im just so scared its so life changing. Im still waiting for my next appointment to come through and the waiting is awful !! did anyone find it really hard to adjust?? I think if I had just lost my leg in the accident it would be different but its the fact I have to make the decision thats so hard !!!

Take your time to think about it then ... as with any decision, if you have doubts and think the negatives outweigh the positives, then maybe its not quite the right decision for you at the moment, as you say it is life changing, so maybe you need to get your head around it all properly first. All the things you are mentioning, about the beach, swimming etc., are important to you so ask more questions, go and talk to amputees, see how they manage, look at the prosthesis etc. etc.

Not sure if you got my message I sent to you, but did suggest places you could get information and speak to people. Get back to me if you need to.

Ann

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Hello Hannah,

You are correct it is a permanent choice but living in pain can be more dibiliating as I am sure you are aware. If your pain is so bad that you are unable to use the leg and are thinking about amputation then you are exactly where I was 18mo ago. I had a left leg that was damaged from a birth defect that I drug around for 31 years and finally after 9 surgeries(the 1st was at 18 yrs old after they said I was done growing) so nine in 13 yrs. From the first time we talked about it with the doctors it took me 9 months to do it, there where days that I knew it was the right choice and then days the exact opposite. There were times the thought of it felt like I was suffocating, but once I meet another amputee all of that fear changed. It showed me that no matter how bad I thought it would be, it was still do able. Sure there will be bad days but it beats everyday being bad. This life isnt always easy, but my old one was never easy. I was always just waiting for the doctor to say it was time for another surgery that would no doubt fail. As others on here have said; try to find an amputee to speak with and see them move around and ask the questions that you think make no sense to ask. Cause in my opionion if your not ready for it, it wont be successful as quickly as it could be. The mind is a strange thing that way! I am now almost 9 months post amputation and can say with out a doubt it was the right choice and the only regret I have is not doing it sooner! but as I said if your not mentally ready then your not giving yourself the best chance at making it successful. Good Luck!

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Hannah, it's a major decision, and there's always a niggling worry about whether or not there would have eventually been a way to get a good result without losing the limb. But there is ALWAYS a possibility of ANY choice turning out to be either "good" or "bad"...not only when you're considering something as major as amputation, but also if you find yourself deciding to have Chinese food instead of French for dinner. Life is a series of choices, and you need to be able to make your choice and KNOW within yourself that you've taken the situation under serious consideration and that this particular choice is the best you can make under the circumstances. Not necessarily the IDEAL choice, but the best one possible under the circumstances. That certainty can help you make a good adjustment to the results of your choice.

Give yourself some more time to think about it, if you need to. And do, DO try to talk to some below-knee amps, preferably some of about your own age. But once you make your decision, dedicate yourself to making that decision a success.

I made my own decision to amputate because I was tired of being disabled and in pain. My adjustment was actually pretty easy...there was so much work to do to get my life and health back that I didn't have much time to have regrets. Do I wish that I still had two strong, healthy legs? Yes, of course...but the truth was that I hadn't had two strong, healthy legs for a long, long time. I now have one-and-one-half strong, healthy legs and a fine, strong prosthesis. It's a tremendous improvement in my life and I'm glad I made the choice I did.

Just to let you know, it's actually pretty easy for an amputee to swim. I know folks who do it both with and without prostheses...I've done it both ways myself and I'm pleased that I was finally able to get a water-activity leg for myself. Getting into a pool is really, really easy, but I'm an old gal and getting OUT was sometimes a bit of a struggle for me. That's just ME...plenty of other folks with less than the usual number of limbs can climb out of the pool just as easily as they go in. As for getting along on the beach, aside from having to take some care with the prosthesis, it's not terribly problematic. I'm hoping to be able to take my water-leg down to the ocean sometime soon, myself.

As for "what it looks like"...well, I have had people assume all sorts of things about my leg, including that it's NOT a prosthesis! My water-leg is different...it is very definitely a prosthesis that looks like a prosthesis, and I have not yet decided what I'm going to do to "jazz it up." But what I've discovered over the years is this: if I'm out there and confident and not thinking about "what it looks like," I really don't notice if anyone else is paying any attention to it! I regularly wear shorts, I occasionally wear skirts, and I'm still just as bad a dancer as I've always been. No worse...just generally bad. Doesn't mean I don't dance!

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Yes, you can wear heels, to a point.....they have "heel height" adjustable feet, which is pretty much what it would require. Or one foot specifically set for a certain type heel.

I have a heel height adjustable foot and I love it. I can go from flat, bare foot, to a heel of about 1 3/4 inches high.. My foot is made by Ossur, and all I do to change the set of the heel is push a button, set the foot, and push the button back into lock position. There are other brand name feet that the heel also adjusts on, but from what I have seen they require an allen wrench/hex wrench (depending on where you live as to what it is called) to do it. There are others on the forum that are using/have used them, I'm sure. One tiny bit of advice.. if you go that route, with the heel height adjustable foot.. give yourself time to heal after the amputation and learn what you need to learn in a good solid walking shoe first... In the beginning, a friend / member of the forum once said, "Baby steps, baby steps, baby steps.. As a child you had to learn how to walk before you ran.. " Don't expect to get your leg, and run comfortably in a day.. Allow yourself the time to learn what you need to.. More like, a frame of mind... For most, it is overwhelming at first..(so expect that).. They give you a prosthesis, and all the stuff that goes along with it.... liners, ply socks, etc. and then it is up to you to maintain all of it. You know that it is expensive, and in the beginning.. wonder..." What the h**l.". Even the most adjusted person has had their days, wondering if it was the right thing, or just wondering what the heck do I do now.. It is common..It is something that we have all been through.....

I know your choice is hard.. all you can do is exactly what you are doing, make the decision by being as informed as you can...

We're always here....any of us, to help you if we can.

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hannah

Welcome to this forum. Your case is similar to mine, although I lived with my knee being fused for eight years before, thankfully,

my leg died of mistreatment, lack of blood flow and blah blah.

ANYWAY AMPUTATION WAS THE BEST THING THAT EVER HAPPENED FOR ME. My residual leg is 8" and gives good stability.

My life is full again and I have more mobility than I've had since my original accident in 1974. It actually makes me regret all

those years of fusion, just being over the years of pain makes it worth while. I will not add my theory of surgeons doing

lower limb fusions. When people say an amputation is forever they forget that a fusion is forever as well. They are very

destructive. I have no hesitation recommending amputation over fusion in the lower limbs.

Best of luck to you,

PeterK

AKA

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