Ankle fusion. Can anyone share their experience please?

[BringmeGin]

Hi. I have been advised I may need ankle fusion surgery for an arthritic ankle following a nasty break when I was 17, (27 years ago). Has anyone had this done who could share their experience with me please? I'm concerned about how I will walk afterwards and if it will affect other joints as I'm hyper mobile and already have permanent left hip pain from limping all the time. Thanks in advance x

[Twotabbycats]

Hi, I can't help much as I'm in a similar position but just thought I would bump this for you.

I had two sprains and 3 major surgeries over 8 years, and 4.5 years ago was told I had post traumatic arthritis and a fusion or possibly total ankle replacement was my only option.

My understanding is that you lose the side to side motion with the fusion so walking is not too much of a problem but it would be impossible to run. I'm not very sporty so that doesn't bother me.

Like you I have a problem with my hip on the opposite side, initially caused by a fall but now deemed chronic after 3.5 years.

I have managed to keep limping on the with ankle, partly because I don't think I'd get through the recovery from surgery with the hip pain on the other side. Is doing nothing an option for you, for a while?

I imagine I will probably get it done eventually but it feels like such a big decision.

[BringmeGin]

Thank you Tabbycats! Sorry to hear of your situation too ☹️. I'm really struggling with the pain to be honest, sharp stabbing pain with almost every step! And when it's not as bad every step is a surprise! It's unstable too and gives way randomly so I do feel I need to do something as I have 2 boys and need my mobility now rather than when I'm older as I will be able to rest more then.
Waiting for an MRI next to get the whole picture and he did say he may be able to buy me a few more years with an arthroscopy so I'm hoping that will be the outcome. From what I've read so far the fusion is a dead cert fix once and for all though and the best fix for the pain. I've watched some videos of people walking afterwards and it's not too noticeable actually which gives me hope. I suspect we are both putting more strain on the other hip by managing and limping with the pain!

[BringmeGin]

I do have crutches and a stick but they just make the rest of me hurt!!!

[BringmeGin]

And I don't run either 😂 unless something is chasing me😂😂😂

[BringmeGin]

Like you, I thought this was something I would need in the future but don't feel quite ready for it now! The more I think about it though, the more I think it might be the best thing for my other hip as after recovery, walking would be easier thus not putting the strain on the other side.
Sorry keep thinking of more to say!!!

[MamaHechtick]

I haven't had an ankle fusion but like you it's recommended I have it and at some point I will need it. My reasons for not having it are that I've already very limited movement in the ankle and dread to lose more but also that I have two young DC's and I was told the recovery is a long time of not walking on the ankle, so at the moment it just isn't the time.

However, my left ankle also has arthritis, no where near as bad as my right and I did have the arthroscopy on the left 7 years ago, it has been a great success! From memory I was back walking unaided within 3 weeks. The pain after was minimal and I'd happily agree to that again. 7 years later and from what i know there's no need to look at it again any time soon. So if your ankle isn't too far gone I'd strongly recommend the arthroscopy.
The consultant I saw and have been treated by is Mr Singh at the Royal National Orthopaedic hospital in stanmore, he's extremely experienced in ankles and has a great deal of knowledge on the ankle fusion.

[BringmeGin]

Thanks Mama, I would Definitely give arthroscopy a try if it's offered after the MRI, the recovery period for fusion is a big problem if you are a mum isn't it! It's one of the things putting me off as well as losing movement. Poor you having it in both ankles! That sucks 😢

[TinklyLittleLaugh]

I had it done 20 years ago. For me it was amazing to be able to walk without pain, it absolutely changed my life. Lack of movement was less of an issue for me because my ankle was so fucked as to not even be really weightbeating.

I'm not going to lie though; it was very painful.

[Knitwit101]

I have a good friend who has had it done after years on ankle pain following a nasty break in his late teens. He was in his 50s.
He has never looked back. He was in a lot of pain before all the time. He walks with a noticeable limp, but then he did anyway. The only thing he finds he can't do is run. He just finds the movement too awkward. But he cycles. A lot. Up and down big hills. He doesn't have any pain now at all, compared to endless pain before.

It's not me though, so I can't say first hand. I have been offered fusion of my arthritic big toe but I don't want it. I have talked to my friend about it a lot though. I can ask him any questions if you like.

[Dhalandchips]

I mangled my ankle in a motorbike accident 20-odd years ago. Ankle was fused then. Lots of pain and further procedures. Don't want to scare you but had the leg amputated below the knee a few years ago. This is worst case scenario, but just letting you know it's a possibility eventually. However, I've never looked back! Fitter and happier than ever! Good luck x

[IceBearRocks]

Have you tried forearm crutches or ergo dynamic crutches???

[TinklyLittleLaugh]

My ankle fusion stopped the pain in my hip and knee too. My kids were 5 and 2 at the time I had the op. (Toilet trained DD while we were stuck in the house). Recovery was okay, maybe 3 months. I had two other kids afterwards.

[Twotabbycats]

Thanks to others for sharing your stories, it is really helpful.

Bringmegin I think I bought some time with previous surgeries, each time they have smoothed the ends of the bones that touch which has helped a bit with the pain. (They also tried to do a procedure called microfracture where they drill tiny holes in the foot bone to try to stimulate it to make fibrocartilage. I should have worked for me the first time as I only had a medium sized cartilage tear at that point. But it didn't, and then didn't work on subsequent occasions because there was just too much damage.)

Sorry you are in pain with every step. I still have some days that are more discomfort than pain so I guess I am lucky. I'm glad you are getting an MRI. Your instability could be due to ligament damage - I had a ligament repair in my third surgery due to a second sprain (which was probably due to... loose ligaments, a vicious circle!). The surgery had to be done as one ligament was completely detached but the downside is that the 'tightening' of the ligaments can also worse any arthritis. Anyway, definitely worth going for more conservative treatment first to see if you can put off the fusion for a few years, I would think!

I have read about cartilage transplants in the US but they have never really taken off in Europe. I keep hoping they will find a way to make it work in time for me!

My second surgery was a calcaneal osteotomy and that was really painful - I think anything where they start chopping into bones is going to hurt. I can't imagine how much a fusion would hurt.

The ankle has definitely been a slippery slope for me as I now have fairy serious back problems as well as the hip thing. My ankle has almost taken a back seat because I've lost a lot of mobility through other things - so I walk less because of them which is better for my ankle... not really the solution I was aiming for! I'm pretty certain a fusion is in my future too as my ankle is only getting worse as I get older.

[DustyMcDustbuster]

I’m awaiting fusion of left ankle, but my surgeon wants to put it off for as long as we can. I’ve had a SPECT scan & am having more injections of steroids in a couple of weeks. I also gave tendinopathy in 2 big areas, and they’re finding it hard to work out whether the pain is more from the arthritis or the tendons. I’m in two minds, as I want it over with & to be healing, but as I have 2 dogs & my son needs me to be able to drive, I know it’ll be a nightmare.

[BringmeGin]

Wow, so much information!, thank you all, have to go to work now but will look forward to rejoining the conversation this evening. Lots of experience here which is what I was hoping for although sorry you've all had or are having similar issues 😕

[BringmeGin]

Well I've had a couple days to mull it all over and I've decided to be undecided for now and see what the MRI shows. Thanks for all your replies, it's nice to talk to people to really get it! Dhal, do you mind me asking the reason for the amputation? Was it directly related to the fusion or due to the other damage that was done or an infection?

[BringmeGin]

Interesting Tabbycats, all the tendons and ligaments snapped and were repaired when I initially broke the tib and fib parts, maybe there is more to the pain than just arthritis, another reason to wait and see what the MRI shows x
Another question for you all, during examination he got me to do all sorts, pretend to ski, lean forward and back, stand on one leg, poked and prodded it, all relatively pain free. Then as we were talking he took my foot and pulled, OMG!!! I nearly shot through the ceiling, it was agony!!! He then apologised and said it was another test and he hadn't done it just for fun! It brought tears to my eyes and the ankle has been v sore ever since (2 days ago).
Has anyone experienced this test? Know what it was for or would tell him? TIA!!!

[Mumblesoldbloke]

I had an ankle fusion 12 years ago, when I was 47. I can only wear one type of normal shoe for work and even then I’ve had special insoles made. If I wear them for a full working day then the next day is very painful.
Overtime by using trainers with a lot of air in the heel I’ve got to walking 4 miles first thing most mornings. I notice if I’ve sat for a long time or I’ve been sleeping then the first few steps are painful as it stiffens.
Interestingly 8 months ago on the other leg I had a total knee replacement and it’s so painful the ankle fusion has paled into comparison.

Good luck for the future

[BringmeGin]

You poor thing Mumbles!!! This is why I have reservations, if I leave it a few years I may get a replacement instead that moves! I'm sorry your experience of both types has been bad, you hear such wonderful stories of how they have been life changing for people (I know several who have had fab results from hip and knee replacements) but not so much about when it doesn't go to plan. I feel for you x have you tried fitflop shoes and boots? That's all I wear now because the soles are so soft and cushioned, thick and very shock absorbing, it's like your heel never hits the floor it just sinks into a cloud!!! I can't wear anything with a thin flat sole any more. Not cheap but always plenty on eBay x

[Jellykat]

Interesting thread.. I was offered a fusion for my ankle 5 years ago, but decided against after my very down to earth GP admitted that there was a real possibility it wouldn't help, and in fact could make things worse!
I can't have any other surgery as they've said the gap in the joint is so minuscule they cant get in there..
In the meantime, like you OP, i can only wear thick soled footwear with additional insoles to 'cushion' impact, made additionally tricky as i have very long feet, and spend days studying footwear online whenever i need new shoes.
Apart from Osteoarthritis and tendonitis in my ankle, i am also hypermobile, so have to wear boots (interesting in summer!) to support my ankles.. my legs are totally different shapes, as one does all the work, but i've convinced myself only i notice
It's all a nightmare, so i really feel for you OP!

[BringmeGin]

I feel for you too Jellycat,I keep telling myself it's only joints, it's not life threatening, and I'm reaching an age where I'm seeing more and more devastating things happen to others, but the bottom line is pain still sucks!!!! It's nice to be able to share that with people who understand! ❤️💐 to you all x x x

[Jellykat]

Thank you Gin, and yes i completely get what you're saying.. We're still here and should be grateful, absolutely!.. I've had to stop driving as can no longer use the clutch pedal, and live rurally, but maybe one day i'll be able to get an automatic.. For now couldn't give a monkeys that i limp from A to B as long as i get there
Good luck, and would be interesting to see how you get on re. what you decide surgery wise x

[BringmeGin]

I will keep you posted, have received a date for MRI, 11 Feb, at 6pm. Gonna just see what that brings as for all I know that could change everything! Take care all x

[Knitwit101]

if I leave it a few years I may get a replacement instead that moves

My problem joints are only my big toes so not the same, but I keep putting fusion off because it's so permanent. What if some amazing breakthrough is just round the corner? I know it's probably not but you never know.
And the recovery time, and the lack of guarantee that it will work. I guess you will know when the pain gets too much and you're ready to give it a go because you feel you've got nothing to lose.

I worry that walking funny to avoid the pain will have a knock on effect on other, bigger joints. But so far that hasn't happened. And I guess a fused toe/ankle isn't exactly going to lend itself to 'normal' walking in future either.

For now I want to hold on to some movement, even though it's painful, for as long as possible. But I do envy people who took the chance and are now pain free.

I hope your scan maybe made your decision a bit clearer op.

[BringmeGin]

Had the scan and just waiting for appointment to see the consultant again now. Will keep you posted x