Ankle fusion? New here!

Nissaj01

Hi everyone! I'm a newbie here! Just stumbled across this forum and all the posts look very helpful

I'm from NY, 26/F. Let me give a little background first I have a rare form of Multiple Epiphyseal Dysplasia, it's genetic, my moms side of the family has it. My mom has had multiple joint replacements (both shoulders, both hips, wrist fusion, the list could go on lol). My orthopedists here are completely stumped at what to do with me because this disease is so rare here in the states. I have tried mobic, celebrex, doctors wont prescribe me pain medication either because of my age. I also have scoliosis, right and left hip arthritis/dysplasia (will need hip replacements, but am again too young...), 2 surgeries on my right elbow (debridement), spinal stenosis...

Anyway, for the past year, I have been getting fluoro-guided ankle injections to help with pain. My ortho told me I can get them every 3 months...my ankle joints are so deteriorated that he said it won't damage them anymore. I was told I was a candidate for ankle replacement, but am far too young for it (very frustrating...so what i am supposed to do until im old enough? Not move at all!? Ugh...) He also said I could try fusion or a debridement. I am at my wits end with my right ankle. It will randomly give out on me, its in constant pain, and walking is so tiresome and painful now, I am at a loss at what to do. The injections provide temporary relief, but lately I have found that with each injection, the pain from them gets increasingly worse on my right side (not sure if he is hitting a nerve, or if there are bone chips being pushed around and irritated when getting the injections).

Has anyone had ankle fusion surgery? If so, how is it? Any relief from pain? I know they recovery process is painful but, at this point I am just fed up. I try and remain positive on a daily basis, and always tell myself things could be worse, and I think positive thinking is what has helped me through so much. But the pain is just getting ridiculous. I just wish my specialists had more answers for me or even would put me on something to prevent bone loss.

Thank you for reading!

Melissa

Nicchick

Hi!

My OH had a fusion year before last and he's still in a lot of pain now, he gets a lot of swelling still if he's standing for any length of time and he's been told that his foot bones are naturally fusing due to arthritis and eventually he'll have absolutely no movement in that foot!

I did know him before his fusion but we weren't together at the time - he's in bed right now but when he gets up I'll ask him how it compares to before as we haven't spoken about it in a while, these are just my observations.

Nic x

trepolpen

hi Melissa , wecome to the forum

you could try debridement which think is to clean out the joint but it tends to comeback soon

there is several joints in your ankle but think you mean the main ankle joint , had the small joints done myself , opperation called Triple Arthrodesis & helped a lot but will need the ankle fused at some point , the fused joint dont give any pain , could could try a brace to immobilize your ankle to see how it feels to have the ankle fused

there is several threads ablout ankle fusion/replacements on the forum , one about Scandinavian Total Ankle Replacement (STAR) & think you should do some research on it , pretty new opperation but may suit yourself

trepolpen

Nicchick wrote:

Hi!

My OH had a fusion year before last and he's still in a lot of pain now, he gets a lot of swelling still if he's standing for any length of time and he's been told that his foot bones are naturally fusing due to arthritis and eventually he'll have absolutely no movement in that foot!

I did know him before his fusion but we weren't together at the time - he's in bed right now but when he gets up I'll ask him how it compares to before as we haven't spoken about it in a while, these are just my observations.

Nic x

hi Nicchick
they dont tend to fuse themselfs , he will need a operation to do it , Triple Arthrodesis is fusing of the heel + main ankle joint , if its left to long he will get poblems with circulation because of the swelling

pegleg

Hi there and welcome , I had an ankle fusion in 2009 aged 46 , back to work after 3 months (part time at first) , its the best thing I ever did ! , gives me no trouble and can walk for miles on it , if you need any more info please feel free to ask xx

frogmorton

Hi there!

A quick welcome to the forums from me

I am useless with this as I have no experience except my BIL who has had both fused and is very pleased with the outcome. The most recent being only last Autumn. He had had both 'cleaned out' prior to tisi a few years back which bought him some time.

This 'you are too young' business is beginning to sound like a stuck record though :roll:

love

Toni xx

constable

Hi and welcome. You have found a wonderful forum. I cant help or advise as I have not had the ankle problem. Just wanted to say Hi. But I know there will be others who will be able to help in some way.

Being young should not make any difference. It does make me cross, when they say things like that. Age has no bearing on it.

You sound like you dealing with all these problems well. Keep it up. Dont give in will you. Keep on going. As far as I am concerned as you are so young they should be looking at ways to make your life as pain free as possible.

Keep on posting, they are a lovely lot on here.

villier

Hi Melissa a big welcome to the forum, I'm afraid I can't help you with your question as it is OA in hands I have, being the weekend the forums tend to be a bit quieter but I'm sure there will be a few others along to help you with your queries, nice to meet you hope to see you around........tc..............Marie xx

stickywicket

Hi Melissa and welcome from me too. I'd guess that multiple epiphyseal dysplasia is pretty rare over here, too. Certainly I've never heard of it before even on here. It sounds as if it's a very tough call.

I know we've had people with ankle fusions on here. I guess they're pretty effective on the whole as members who've had them seem to run off to live their lives And, why not?

It's interesting to me that you, too, get the 'You're too young' thing from surgeons given that healthcare isn't free in the USA. I'm sure it's a factor as younger people wear out joints quicker but, over here, I think it's also a means of saving money.

You have some tough choice to make and I hope we can support you with empathy even if we can't actually help.

stickywicket

trepolpen wrote:

hi Nicchick
they dont tend to fuse themselfs , he will need a operation to do it ,

Mine did. I've no movement at all in one and about 1/4" up and down in the other. The x-ray of my fused one looks great. The surgeon said he couldn't have done a better job himself

Nissaj01

Thank you all the the nice welcome and responses I agree about the too young thing. It's very frustrating to hear all the time. Since my original orthopedist retired last March (he was amazing! And he saw me for all of my issues, now the orthos here see you for a specific part of thr body -- the ankles, back, shoulders....I just want to scream but I am one whole person! So now I have 3 different doctors. It seems many places in thr US are doing this).

I really think I will talk to my doctor about the debridement before the fusion but am glad to hear about successful fusion surgeries. My doctor told me my entire ankle (the main joint and small joints) is the worst he has seen in a 20 something year old. And this just makes me wish more he would do something now while I can still move, instead of wanting to wait u til I'm older. I know joint replacements wear out the joint and do have a failure rate, but I'd like to be able to experience life some what pain free now. I can. I can not remember the last pain free day I had. If I was a 26 year old football star, I'm sure I'd get anything needed to get the ankle mobile again!

I just had another ankle injection in both ankles on Friday. The right ankle is in severe pain. Im starting to think he hit a nerve. I'm going to call the doctors office on Monday, and get in to see him again and bring up the debridement. Maybe it will give me a little bit of relief? I had my elbow done 3 years ago, and it still feels good (I will knock on wood here so that it doesn't start hurting again haha!).

Again, thanks for all the responses I look forward to being part of this community! I think talking to others with RA/OA will help.

stickywicket

It's the same over this side of the pond with orthopaedic surgeons. We get hip-and-knee men but the ankles are a different one and so are hands. I've not tried shoulders yet

constable

Dont forget to let us know how you get on with your doctors. I am sure we would all be interested in what he says.

Lets hope he is able to maybe offer something more for relief of your pain. You should be out enjoying your life.

Nissaj01

I'll be sure to post back. I'm going to call his office tomorrow and hopefully he can get me in sometime this week. Not sure what he hit when he did the injections this time, but can't even put weight on my right ankle now. I just want some relief.

trepolpen

hi Melissa

there is nothing they can do apart from fuse the small joints in your ankle & would recommend you do it as soon as possible , the longer you leave it could cause more problems , is it one ankle or both you need to have done ?

its well worth having it done , hope you get on well with it

Nissaj01

trepolpen wrote:

hi Melissa

there is nothing they can do apart from fuse the small joints in your ankle & would recommend you do it as soon as possible , the longer you leave it could cause more problems , is it one ankle or both you need to have done ?

its well worth having it done , hope you get on well with it

Hi! I just worry about mobility from a fusion and how changing my walking would effect my hips. I do agree the longer they want me to wait, the worse off my joints are going to be. I will need both done, but the right ankle is by far in more pain then my left one. So if I did have it done, I would start with my right ankle.