Ankle fusion

[adele]

Not sure if it was ok to start a new topic, so mods if you want to move it feel free...

Ok i was way to scared to come on here and post because i was scared of the responses i would get. However i feel that there might be some advice from people that may help.

First a little background... I have had ankle problems since the day i was born and was told i may never walk... i was a late walker though very stubbon and determind to do so, even though it ment that i fell over constantly.
I started having physio on them for as long as i can remember. But it got to the point physios gave up on me as it wasn't getting anywhere... i have since found out that the physio i was doing had made my ankles worse.

I have tried multipul orthotics and AFO's, wearing each one until my ankles got to bad for each of them. The last one being the richie brace which was amazing for me. which was gradually changed and built up until it couldn't have anything else about it changed.

Before i dislocated and broke my ankle my ankle had got a stage further so i booked an appointment to see anyone i could. They were hoping that it was just a case of the plastic getting flimsy so they sent my spare pair off.
In the mean time i hurt my ankle and was unable to do anything about the AFO's or go to the appointment with the main guy i see.

I am still currently in cast (aircast boot) but went to see a member of the team yesterday.
Due to how bad my ankle was and the amount of damage caused by the fall it has now got to the point nothing will work.
I had the option of full time wheelchair, or ankle fusion. I knew this day would come (i was told about 2 years ago that it would eventually get to the point where this would be the case) but we were hoping that it would be many years away yet.

I always said that if it came to the choice between the surgery and wheelchair i would go for surgery. I am fully aware of all the complications that can occur and these were discussed in detail at my appt. They (both the surgen i normally see and the member of the surgery team i saw yest) seem to know a lot about EDS and the complications it can cause. The guy i normally see has even talked about the effects on eds and podiaty problems at a conference i believe (using my ankles as the example). Because of his knowledge it was said that surgery would only happen if it really was the last resort and there was nothing else... i really trust him that there is nothing else left (he is one of the best guys i have ever seen)

I wont know exactly what will be done to my ankle until i get back from theater. Based on the assesment i had yest apparently there is a very stong possibility i may have to have a triple fusion (a big shock to me cus i always thought it would just be a subtalar fusion). They will only know exactly what they will need to do once i am in surgery.
It was said that to give my ankle more chance of healing more stabley (sp) they may reconstruct the ligaments while i am there (they are very aware that just doing that does not tend to work with connective tissue disorders). So it will be major surgery.
I know also that there is only a 50% chance of it working... so am pretty scared.

I am seeing my main guy, who is the main surgeon on monday for a kinda pre op assesment and discuss more about what he may or may not do... so hopefully i will know a little more then.
I have also been told that due to how unstable the ankle is i have to stay in the aircast boot until surgery which could be up to 3 months away.

But i want to know if you guys have any expreience of things that def should or should not be done. They have already said that they will keep me in a plaster cast for a min of 3 months to give it optimum chance of healing properly.
Also my surgery is at charing cross hosptial and i was wondering what peoples experiences are of that hosptial if you have been

your knowledge would be greatly appreciated.

Thanks a lot for reading this, sorry its so long, but i wanted to give the whole picture so that hopefully you will see that i am not doing this lightly and i really have tried all the options.

Take care, lots of love and gentle hugs,
Adele xXx <><

[gila]

no knowledge, no advice- can only send BIG and strength for making your decision-
xxg

[Blaadyblah]

I believe there was a topic back before the 'troubles' but since, there've been just ankle reconstructions and total wrist fusions. You really have run out of other choices, haven't you? Do you know when the surgery is likely to be?

[Englishgremlin1]

It strikes me you are doing the only thing possible. If you can retain walking then you have to give it a go, at this stage there is nothing to loose.

If looks to me like they have taken a vary careful in thinking of your care and the possible problems - can I borrow your team?

One thing I would think about is asking about a rehab programmme for after. I have just gone onto fixed AFO's which lock the ankle joint and they mean new techniques for standing and balance.

[Sue New]

Hi Adele

I am sorry it has come to this, but it sounds as though your surgeon is well clued up on EDS and will do all he can to get you back on your feet again.

I will be thinking of you

Sue.

[jayne]

hi Adelle, am sorry to hear about your ankle. I hope that all goes ok.
I am 8 months on from having 2 ankle ligaments reconstructed with tendon and all other ligaments in the same ankle tightened. the surgeon is really amazed that I hav'nt started subluxing again yet. He could'nt believe that I had been walking around for 18 months with just a bandage on and no crutches! As he put it after my surgery ' we moved you in theatre and your ankle dislocated before we touched it'. my reply was 'it did it everytime i took a sock off or lie on my right side!'.

My surgeon has been brilliant, he understands how fragile my tissue is. We agreed if i could get an 'almost normal ankle' from soft tissue surgery and get at least 2 years out of it I would be happy. If I somehow undo this repair we are considering artificial ligaments as a step before fusion. He is worried about how that would effect my knees as I am fairly active. It will all depend on whether or not I put my foot in a muddy hoof print again!

I was however in plaster for 4 months and was still struggling to walk properly until july/august. I am now waiting for new orthotics from Leeds, (I dont trust anyone else to make them).

It sounds to me like you have had a really rough time with your ankles, for a much longer time than me. am guessing from you post that all other avenues have been looked at? i think you are very brave to be going ahead with fusion, I would be scared too.
You are the only one who can make the decision about surgery as it is your body.
Let us know how things are going, take care.xx

[Katt]

Hi Adele

I wondered how your fusion had gone? I'm looking at the same surgery - talonavicular but more likely a triple arthrodesis as so many joints are affected. What was your recovery time? I'm not in a brace atm but walking is 'very' painful (not helped by a fracture / dislocation this week that took three goes to reset - TG for gas and air LOL!).

Katt

[loosebones]

Hi Katt, I don't know how often Adele reads the forum but she's not had the fusion as yet. Currently Adele uses a Calliper for her knee and ankle instability. Maybe Jayne can help you out?

[jayne]

Hi, I don't know much about fusion, except it's very final and leaves no other options.

I had been having subluxations and recurrent falls through my ankle giving way for nearly 20 years! I eventually went over on it heavily enough to rupture 2 ligaments two years ago. I feel so lucky that my surgeon decided to try a soft tissue repair first, because it has worked and I was discharged from his clinic today! There was no 'abnormal' laxity to be found nearly 10 months after the surgery. Even before my injury my ankle was classed as 'grossley unstable' and even scared Professor Bird! My ankle used to get stuck on a regular basis and sometimes I needed help to 'unstick' it.

my surgeon is fully prepared to do the same proceedure on my left foot if I start to get further instability. He felt that a fusion was too final for me and too restrictive.
If you see my other posts on ankle reconstruction, there is a bit more info from myself and Paw.

[paw]

Katt, the only one I know personally with an ankle fusion is a friend who destroyed her ankle in a fall on a wet floor at the restaurant she worked at. She said her foot turned all the way around and it was on backwards with the toes pointing behind her. (Sorry this is so graphic, but it tells how bad the damage was) She is the one who turned the foot the right way because everyone else was afraid to touch it. She is not hypermobile and she does not have any chronic health conditions.

She ended up with everything fused and she has less than 30° flexion so her walking is severely impacted. It took months and months before she was able to stand on that leg, she was in a wheelchair. With a lot of work and constant pain she gradually got walking. She has special custom shoes called "rocker soles" that look like those Shape ups only with an even rounder sole. The shoes are really expensive, about $700 a pair.

It has been about 5 years since her accident. Last year she stopped wearing the rocker soles and she is trying to walk without the help of the rounded sole. It hurts all the time, especially when she puts weight on that foot. She says they were really close to amputating her foot and that she wishes they had done it. She would walk better with a prosthesis.

The reason I wrote all this is to give a glimpse at one crushed ankle, fusion and recovery. Don't expect it to give you normal function. I would avoid this unless they can't do anything at all. It would be my last choice. I have had a triple ankle fracture so I know about the recovery and the pain involved. Mine hurt constantly for 4 years. It is not to be taken lightly. I have fairly good function and my ankle is stupidly hypermobile again.

Good luck to anyone who has to have this surgery.

[WinonaLemonade]

hi i haven't had an ankle fusion but have very limited dorsiflexion in my ankles (upwards movement). i can't move my feet into neutral position myself but doctors can push them into neutral and most days the weight of my body pushes them down so i can stand flat on the floor.
i still have the hypermobile movement were i can bend my ankles down very far. basically i don't want to put you off but having such limited ankle movement has really messed my feet up because they are still hypermobile. you also end up taking a lot more impact through the rest of your joints, i'm looking at surgery to increase the movement in my ankles but am waiting until i can't stand flat on my feet at all and i'm still really uncertain because it's a blind procedure, weakens your legs and i don't know how it will affect the rest of my joints. i would say it should definatly be a last resort. best of luck with sorting out your ankles

[paw]

Winona, have you tried the shoes with the rounded bottoms like the Shape Ups? There are a bunch of people making similar shoes now. They are not recommended for hypermobile people but you might be an exception. They can be more difficult to balance in but they would make up a little for the flexion you don't have on your own.

It seems worth a try. Ankle fusion scares me. I understand it might be the last option for some people though.

[Spireite]

I'm interested to read how people have got on with ankle fusion and also ankle ligament tightening as I have had very bad ankles for a long time (since childhood). They used to jam 20-30 times a day and were getting worse. I haven't heard any good stories about fusion to the ankles or spine (another problem area of mine) and it isn't logical to me that joints should be fused, though I do understand it might be necessary as a last resort. I have had prolotherapy to my ankles and I'm very pleased with the result so far, with much reduced 'jamming' and has enabled me to keep walking and running and other activities. I have also improved dramatically on the wobble board. I plan some more to stabilise my ankles further and hopefully make them a bit less overpronated and help my spine also. I would definitely think it is worth a try before something as final and profound as fusion.

[rediceblue1000]

Hi Adele Okay so i dont have hypermobility syndorme but what i did have is a triple artrodesis (full fusion) of my left ankle 18years ago when i was 19 years old. I had an accident that left me with basically my toes sole of foot heal and back of ankle intact. Following 3 years of trying to keep it in position and 31 surgeries i went for the biggie surgery. What can i say yeah it is not great not to have movement HOWEVER it all depends on you.. it is not the end of the world and even though i have a strange shape to my foot that you wont have that causes trouble for shoes i have no pain...

I would suggest you agree with the Surgeon the exact positioning of your foot- think about how you put shoes on etc anb sure the angle it is set at is agreed with you. Too flat and it will leave you with a severe limp to angled and you will not be comfortable in shoes...

The recovery itself can be a little harsh but nothing in comparison to what you have already suffered.. I swim, hike, and run after my kids (okay so i cant catch them) but day to day no pain. Have to say would love to wear high heals Red ones for Christmas but you know what knee high boots with a low heal are fine! Best of luck to you on your surgery and to anyone out there who is faced with this decision.... Amputation is a last resort you can always do that afterwards if you really have no choice... Me!!! Ive done everything i have wanted and by the way sking is great for anyone with a fusion it puts you in the same league as everyone else.

Best Wishes for Christmas

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[Rosie]

Hi all

Rediceblue, I am not sure that you understand the impact that HMS/EDS3 can have on surgery and recovery.
Adele, I do think that you are maing the right decision here. You have had trouble with your ankles for so long and I think that you have been given some good advice, you have a good surgeon who understands the issues.
One thing to consider is that a cast can be quite heavy, so have a think about how you are going to cope with that.

I wish you luck with the suegery. It's a hard decision, but I think it is the best option open to you.

Rosie