ankle fusion v Lower leg amputation advice please...
Posted , 15 users are following.
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
0 likes, 23 replies
becky7624 waynescott
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.
lors23 becky7624
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
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becky7624 lors23
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!
lors23 becky7624
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
kevin2712 waynescott
Posted
Hi Wayne, im 9months into my subtular hindfoot triple fusion and i dont know if its my surgeon or my lifestyle or my size (6'2 &120+kg) usually 105kg... ive been complaining since came out of boot and started FWB, so 6+ months and they said looks fine and give it time, if they knew me theyd know ive got great pain tolerance so finally get CTSCAN and hasnt fused
They automatically blame tobacco and occasional illicit use for failure to fuse.. even though ive said doesn't feel right and my weight.. im normally fit at 100-105kg, broad shoulders and big bones. Thats 20-30kg morw than average male and add 20kg from insufficient movement and lil over medicating of Woodstock 8% for my depression, amplified by feeling pain should be near 0 and its sumtimes anywhere from 3-8 out of 10!!!
Myself, ive thought about and brought up amputation with family and surgeons but was told to give this fair go first!!! Im So disappointed not only in non fusion but with the information, support and empathy shown by surgeons.. total lack of effort in helping understand procedure and rehab but also in taking in my concerns, points of veiw and levels of pain..
If i didn't push, i would never have seen xray where noticed i had snapped fibula (so could straighten foot), have gotten physio orthotics or CTscan where the realization of pain=non fusion as if they cared to find out about me before surgery theyd realise im ok with pain and if im complaining they out to listen..
Anyways good luck, il be keeping an eye on your decision and hope its rite 4 U
Lilibond kevin2712
Posted
My first fusion did not fuse and it was due to dr. error...he would never admit it either. My next doctor did it correctly. He would never say anything negative about the first dr., but I am thankful that he repaired the damage. It isn't pretty to look at after 4 surgeries in 3 years (last one done November 2011), but I can walk. Stairs and hills are a challenge and I can't run, some yoga, pilates and ballet positions are impossible, but that's all. Please research and check reviews and find another doctor to repair the damage. The first doctor, after 6 months, kept saying, "give it time, I'm sure you'll be happy!" I healed within 6 weeks with the second dr.
david15637 waynescott
Posted
Sorry to hijack but I'm in serious need of advice.
I had an accident in July 2014 from which I did a lot of damage to my left ankle, since then I have had several operation all of which to no avail .
The pain is absolutely dreadful, I am currently taking 75mg of nortriptyline per night plus ibuprofen and paracetamol through the day.
2 weeks ago I saw a reputable consultant at chapel allerton hospital in Leeds who says my ankle can not be repaired as there is too much damage to bone and tissue and wants to do a full ankle fusion.
Before my accident I was a keen rugby player , tennis and off road cycling but since the accident I can't do anything at all because of the pain.
I'm afraid after the fusion I still won't be able to partake in any activities and could possibly end up with spinal problems and hip problems so I was thinking maybe a below the knee amputation may be the better long term option .
Could any one advise me please.
Thank you
Ceejay87 david15637
Posted
Hi David15637
Sorry to hear about the awful time you've been going through. Pain is a horrible thing to live with!
I had my left ankle fully fused after a road traffic collision and last year i had my right leg amputated below the knee.
An ankle fusion should definitely be the first thing to try - amputation is the absolute last resort, and although you see lots of paralympians running around on prosthetics, it's not like that in reality. Prosthetics are difficult and uncomfortable, and for example right now, my prosthetic foot has slightly misaligned so I have to wait to see the prosthetist for a correction and he can't see me till January, so that means 6 weeks in a wheelchair.
A fusion is also a big op, and irreversible, but hopefully wouldn't have the same difficulties and complications as amputation. I can tiptoe and walk pretty much normally on my fused ankle, uneven surfaces like sand are harder but that may be as I had a partially fused right and now a prosthetic on the right. My fusion was 10 years ago and I'm virtually pain free on the left.
I really think you should consider the fusion first. If it's unsuccessful then you can look at amputation later down the line.
If you have any questions just ask.
Good luck and best wishes.
CJ