ankle fusion v Lower leg amputation advice please...

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hi, I am seeking advice from anyone who has had a ankle fusion please. has it been a sucsess ? would you reccomend having one done, and how is your mobility now ect...my breif background..had a TAR nov 2014, failed..revision/ repair sep 2015  failed.. Tendon Decompression surgery june 2016 not eased the pain or discomfort. now ive been told by surgeons at Wrightington hospital (uk) that the only two options are ankle fusion with bone graft, or lower leg amputation. i would greatly appreciate any advice. thank you in advance..wayne

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  • Posted

    Hi Waynescott

    Sorry to hear you're going through such a difficult time! I've had a fusion on my left ankle and a partial fusion on the right. However the right has never managed to heal/become pain free and rather than have 2 fully fused ankles I will be getting a below knee amputation in a few weeks. I will then have 1 prosthetic and one fully fused ankle which will be difficult and there's a chance that I will end up having the other leg amputated a couple of years down the line. So although my fusions haven't been entirely successful and I'm going to end up getting an amputation, the left ankle which was fully fused 9years ago has been relatively pain free for that time! So I think I'd say that before you go through amputation, if the surgeons think there's a high change of success from a fusion then maybe try that. The worst that will happen is the fusion won't work and then you get the amputation at a later date.

    I hope that helps a little, and I wish you lots of luck with your decision and future health.

    If you have any questions just get in touch

    C

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    • Posted

      thank you so much for your reply, the only problem i have with the fusion is that my surgeon cannot guarantee that i wont be pain free, and that is what i want to be the most. i have been in cronic pain since he botched my ankle replacement back in 2014, and ive had 4 more operations to try and fix the problem. but everytime the pain gets worse, so i was thinking (maybe stupidly) just to have it removed.i will be having a discussion with him in 2 weeks so will keep you informed. thanks again for your advice, much appreciated. wayne
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    • Posted

      I can completely understand where you're coming from. I've been in chronic pain since 2007. It destroys your life! And I've met loads of amputees while making my decision (which was really helpful and I'd really recommend it!) And their quality of life was always so much better than mine that I came to the decision that I'd rather take a chance and have the amputation than stay in the pain and on morphine etc. for the rest of my life!

      When making my decision I saw 3 surgeons (I wanted 3 opinions) and all said that my only surgical option left was amputation. Then I went to a prosthetics facility to see the prosthetics, meet some amputees and speak to people about recovery etc. And I also asked friends and family if they knew any amputees and I ended up meeting some fantastic people... Some were doing incredibly (joined the Paralympics less than a year after the op) and others were just coping, but were still better than they were pre op. It gave me hope that my life might get better!

      Of course there's the chance of phantom pain, or that you may not be able to use a prosthetic for some reason, so you need to think about all these things and whether your going to be able to cope with such a life changing op. But for me, when it came down to it, I knew it was the only thing I could do to give myself a chance at getting my life back!

      Please keep me updated on how you're getting on, and message me anytime!

      C

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  • Posted

    Wayne I'm so sorry i can't believe what I'm reading here. I'll PM you shortly when damn site stops crashing 

    Gill xx

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  • Posted

    Christ Wayne, what I choice!?

    i had a longitudinal fusion of my left ankle back on the 26th January this year, that's following a successful lateral fusion back in 2005 and an unsuccessful joint clean up in 2014.

    At first everything was fine until I started PWB after about 10-12 weeks. I sustained a fracture to my tibia directly above where the two screws were inserted through the bone in the ankle joint! New cast, back onto NWB which is where I still am today! The fracture is taking forever to heal. I now have a bi-valve cast which is to allow for swelling. I still can't putbanybweight through the joint because it is so painfull! I go back to see the consultant next Thursday the 18th for more X-Rays and to see where we go from here.

    Seven months in a cast is starting to put pressure on my right ankle and lower leg too! l think I'm showing signs of osteoarthritis as I've now got a clicking in my right lower leg! I've just 3 fractures in there from a footballing injury 25 years back!

    Worrying times! I told work I'd only be off for about 3 months!!

    I wish you all the best mate ????

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  • Posted

    I had an ankle fusion in 2010 by a bad orthopedist, so I had to have a "re-do" done in 2011.  I had a total of 4 surgeries in 3 years.  3 by the bad doctor and one by a good doctor and it was a success.  My left leg has lost about 1/4", but I was able to put inserts into most of my shoes and this year I don't really need the inserts anymore.  I have a plate in my ankle - at the top - for added support.  I recommend that.  Overall, except that I can't run and taking stairs down...and walking up and down hills is not all that easy, I am still able to walk many miles per day, do most yoga and exercise activities and unless you knew about my fusion, you would probably not really notice the differences in my ankles.

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    • Posted

      Wow u have been through a lot. So happy for u, that u t doing so well now. U r a great inspiration. I have just been walking for three weeks now without bending the mid section of my foot. I hope in two more weeks I'll start pt & My next phase of walking. Thank u.

      Karran

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    • Posted

      You will do well as long as you believe you are able and capable.  I never had pt - and am unsure if it would have helped.  I have always been a walker - and had strong legs.  My initial ankle fracture, which was "unexplained" - was probably caused by my taking Nexium for many years.  I am a woman in my late 50's now and luckily I remain very active.  You can do it!!!!!!

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  • Posted

    I don't have any experience w this, but if you had tendon decompession surgery in June of this year, it seems you have not given the situation enough time. Of course it will be painful, but healing time should be maximized. In the US, one would certainly incorporate physical therapy. Do you have that option? 

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  • Posted

    Wayne, I think the bone graft goes without saying.  The simply take some of your hip (sort of sand it off and use that sand) and use it in your ankle.  The indentation is barely noticeable...like a little bit of a ledge.  Amputation should be the most extreme last resort and after my experience with the bad doctor I would suggest at least a second, if not a third opinion!  I live in the states where our medical expenses are very high...but I am very glad I found the good doctor and allowed him to repair the damage.  The pain is 100% tolerable and arthritis can be controlled with natural therapy such as SAM-e or acupuncture.  
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  • Posted

    I had my fourth ankle Fusion 12 weeks ago,I'm still recovering from it. I would highly recommend ankle Fusion surgery. I was in a bad car accident in 1989 and I have Osteo arthritis really bad. The pain got so bad I couldn't walk very far at all and it was excruciating. Your motion will come from the toe area but it really isn't that bad you'll be out of pain and you wouldn't have to go through an amputation.

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  • Posted

    First, I'm astounded and very sorry to hear of all your ankle problems and your limited options at this time. Next, I've never had total ankle fusion but I am currently recovering from talonavicular joint fusion and bone graft. I know that this can't compare to what you're facing, but I do have something to suggest.

    When my doctor did the fusion he didn't use a bone for the graft; instead, he used a synthetic compound that included bioactive glass. He said that the synthetic compound would work much better than a regular bone graft and would reduce the healing time considerably. So far, he's been right. When I went in for my 10 week post-op x-ray he said that the joint had fused so completely that it looked on the x-ray as though the joint had never existed. I don't know what your options in the UK are but I suggest that you talk to a surgeon, or surgeons, about the possibility of using this compound. I'm only 3.5 months post-op right now so I'm not completely healed but I'm much better off than some others I read about on this forum whose surgeons used bone for a graft or didn't do a graft at all.

    Good luck to you. I hope that you will have an active and relatively pain-free life after all is said and done.

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    • Posted

      Hi Becky

      I noticed you just replied to this in the past hour. I myself am in shock reading about people getting amputatuons because ankle fisuon has not worked. I am terrified now. I just had a full ankle fusion done inn 5th April and am currently in the moonboot non weight bearing. I am 44 years old and never thought ever that amoutation would be anything that l would need to worry about.

      I was a perfectky notmal 42 year old when l started getting oain in my groin. I thought l had just pullled a muscle and suffered thecoain until it got a lot worse. There is nothing out of the ordinery about me l am was not overweight l worked full time me and my husbabd used to love walking everynight in the summer and go holidays. My only issue was tgat when we tried for a family it never happened. We did 3 rounds of ivf with the last working and l was pregnant. It was an issue witg me producing eggs so on the last shot at ivf l used a doner egg and it worked. But 7 weeks in l.miscarried.

      Anyway it maybe was a blessing because in the past 2 years l have developed ostioarthritis. I have had both hips replaced and 1 knee ans have to get other knee done. But the pain in my ankle was taking over my life and l had to get it seen to 1st. I was under the imoression it was a small op compaired to the hip replacements and knee which l.have healed good with.

      I am really struggling wearing thus boot 24/7 and being non weight bearing as the leg l am using is the one thats needing replaced. But l was not worried about amputations as l thought that would never ever happen unless something went badly wrong. Sorry for the messafe l am just a bit in shick hearing that word. I dont think l would ever cope if that happened. I have been through 3 major ops in last year anda half and just had ankle dine through keyhole surgery. And was moaning that l an not vopinh with mòonboot until l read this.

      Scared now 😕

      Laura

      X

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    • Posted

      Laura,

      I'm sorry that you're so scared right now, but I can certainly understand. I hope that all goes well with your recovery from the fusion. I'm not sure if the fusion is a "small" surgery compared to replacements, but it is more frustrating. At least mine was more frustrating than my knee replacement and I think that is because of having to be non-weight bearing for 6 weeks. With my knee replacement I was being dragged out of bed to walk within 4 hours of surgery.

      I hope you have a knee scooter to use. I wouldn't have been able to get by without one. Try to stay busy reading, working, learning something new on the computer, etc. The time will go faster if you have something to think about besides your ankle. Find some ankle fusion success stories and focus on them.

      Best wishes for a full recovery!

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    • Posted

      Aww thanks becky it certainly is frustrating so much more than both my hips and knee. They might have been much more painful and invasive but l was walking about without sticks about a day after l got out thé only issue l had was sleeping on my back. Ever since l had my 1st hip replacement my sleeping has been totally diffrent. I cant sleep in my bed a full night. I get up and move to the couch. Its a shame as l feel sorry for my husband. I dont know the last time l woke up next to him in past 2 years. But he understands that my life is not the same anymore. I try to go to bed with him everynight but right now is the hardest its been with this boot. I hate it and the cruches. I hate my life just now tbh but hopefully it will get better.

      Thanks becky

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