Ankle surgery, reconstruction

[iina]

Thank you for your advices Blaadyblah! I don't have eds, just hms and some undiagnosed autoimmunedisease (might be the lupus). Orthopedist mentioned something about surgery where they could lock the ligament in to the bone or something like that.. In school they have talked about surgery where they would shorten the ligament.

But you're right, I should talk about this to my rheumatologist first. I meet him just once in a year (actually I don't even know if it is HE anymore, rheumatoligsts go and come so often in the city where I live..:/)and i have so much to ask him, so i thought that I could do a little research before going there, so it wouldn't take so much time from other important tasks..

I don't know how it is in other countries, but I think that in finland policy about sugering hypermobility joints varies very much! If I would live in some other city they might have done the op already, but in Joensuu (the city where I live) they are pretty careful when it comes to surgeries. It might be a good thing, but in this moment I would like to do something radical!

[Blaadyblah]

Just remember that radical is so named for a reason... it's risky. You're right, you should speak to your rheumatologist - but I suspect you'll fid that if he thought surgery would help he'd have referred you to a surgeon some time ago. I know it cn sometimes feel as though you should do anything and everything, but surgery (like tattoos) is permanent. If it doesn't work out the way you're hoping, you'll have to live with that forever - it's a big risk to take. Have you had surgery before? How did you heal from it last time? How have you family been when they've had operations? These are all things you need to consider. As fr as I'm aware, you can shorten a lax ligament - but if you have HMS the ligament will not neccesarily remain shorter for long and could even end up too tight! Just be careful - I'd hate to see you pn all your hopes on an op only to be crushed when someone explains that it will not work for you.

[paw]

Iina I have had a big surgery on my left ankle years ago. I twisted it very badly and it broke in three places and the lower leg broke in one. The surgery was to repair the broken bones and torn ligaments and tendons. It was very badly damaged. They put two pins in it and after eight weeks they removed one of them so the ankle would be able to bend.

I had a long recovery period and a lot of pain with walking. I needed to use a walking stick at first after the cast and crutches and I gradually was able to not need the walking stick. I needed an elastic ankle support for days I walked a lot. I had two small kids when I broke my ankle so I had to go back to being active right away. I was not able to go to physio because I did not have anyone to watch my kids and driving my car was hard for a while.

The bad side: It hurt to walk for a long time. I would get swelling when I was on my feet too much.
The good side: I DID recover. I worked up to walking a lot. I used to walk 10 miles for exercise many days with a friend. Some days I would walk more.

Now I can't walk that much due to my hips. I did not really have an option about not having surgery to repair the ankle since it was so badly damaged. It did heal well but took longer than most people would. Get all the information about the possible surgery and then decide knowing that there is a long recovery for ligament and tendon surgery and that you are not assured of a good recovery. If you do have surgery it takes a long time to walk with no pain. My surgery was nearly 18 years ago and that ankle is no worse than the other one that did not have surgery. Welcome to the site

[iina]

Thank you for your opinions! They really made me think this idea of surgery twice. But I'm going to meet my rheumatologist in april, and I will let you know what is his opinion!

[handybendybecka]

im in the sam e kind of situationn.... my consultant had said they could operate on my ankles (i have HMS) nad take Tendons and shorten them and stuff but is it worth it ?? will it really help if many people are saying it can make pain worse?

he said that just tightening the ligaments wouldnt work as mine are just to strechy and bendy!

any ideas are welcome...

[handybendybecka]

my consultant has said they could operate on my ankles (i have HMS) he sed he would take Tendons and shorten them and stuff but is it worth it ?? will it really help if many people are saying it can make pain worse?

he said that just tightening the ligaments wouldnt work as mine are just to strechy and bendy!

any ideas are welcome...Thanx

[loosebones]

not with it enough right now but don't forget the healing factor - I don't know about you but I heal badly - depends on the individual though. Results also vary for many people.

[sarahh]

Hi ya It would be up to you whether you havd it done or not, we can only give you our views on surgery. When I have had procedured like when I had my back injected twice the end of last year and the beginning of this year it took longer for me to recover and I needed more time afterwards also healing afterwards I too take longer to heal. The surgeon would have to know about hms/eds and has he ever done this op before on someone with our condition and what has the outcome been did it work or didn't it. These things need to be taken into account. I hope this helps.

Sarah x

[cuddles]

hmmmmmmmmmm
i will have to look through my info ,but i "think " i did read that some operations are not prefered because due to the weak connective tissue they do not last long ,and you are back to square one ,HOWEVER dont quote me on this

becka have you asked if your surgeon has got other patients in his care who suffer from HMS or similar conditions ,then atleast you know he knows what he is talking about

have you got a physio ,if so ask their advice ,and also podiatrists maybe also able to shed light on it ,because they deal with the feet going upwards ,and physio's can be knowledgable about muscles and ligaments
personally i would check with them first
as for slow healing ,hmmmmmm ,after my arthroscopy on my left knee 4 years ago ,my knee had 1 inch of padding ,and bandaging .
in the next bed lay someone who had just had a knee replacement ,with a normal pad dressing and tape to cover the scar
says it all
and when the physio came along to give exercises to them to do (knee replacement) she looked at me weird,exclaiming she had been told to "go easy on me " only light exercises to be given

cuddles xxxxxxxxxxxxxxxxxxxx

[handybendybecka]

yea my surgeon/consultant has gt other patients with same condition which is promising and sed he has dun this op a few times and no1 has cum bak 2 him yet:P which sounded gd...... he specialises in HMS etc so is gd and knows what hes on about im jst a bit aprehensive is all!!

hes given me time 2 decide on wot i wanna do n wetha i go ahed so ill keep ya posted.

Thanx every1

xx

[Rachie87]

Hi,

I've only just joined and noticed this thread. I have had the ankle surgery. I've been falling over since i was 3 and had the typical badly twisted ankle every week! I had mine done as i started falling down the stairs and near roads and decided enough was enough. I was told by my surgeon the more i fell over the more bone scarring inflicted on my feet and an MRI proved this.
My surgeon had done the op (shortening and tightening) on a dummy before my op so i was a little apprehensive but im a student at uni so i the need to be able to go out outweighed my apprehension. It took me about 6 months to walk unaided and a year on it is the best thing i have ever done. My feet are badly affected by HMS so i have been told that i may need the op again in a few years. But i only had my worst ankle tightened and its pulled everything else back into line and stopped my knees and hips slipping as much.
The only downside to my surgery was nerve damage, i have lost feeling to the top left side of my foot and my last 2 toes. That and the fact i can now twist my ankle again and it hurts whereas before it reached the point of tearing without pain.

So if you haven't had it done yet, seriously consider it, for 6 months of inconvenience the benefits are worth it in my mind....

Rach
xx

[shen]

This is interesting to read, my ankles have been getting progressively worse over the last year, they crack every time i move them, and i've lost count of the number of subluxtions and dislocations that i've done. i literally walk on the outside on my foot and roll my ankles as i walk, they wont go straight, i can turn my foot almost 180degrees outwards without effort, and 90degrees inwards without effort. (in fact I'm so used it i often turn around leaving one foot facing behind..) they are painful most of the time. i've been waiting 6 months to see podiatry still no news yet. Prof Bird wants me to go to physio again,but last time that made me worse. I don't know how this is going to play out, or what to do about my ankles. I used to have the contraceptive injections, which of course is bad bad bad, prof bird wrote to my GP who refused to take me off them, and gave me them every 6 months instead of every 3, and also refused his request to refer me to a gynecologist, i have all the symptoms of polycystic ovaries. This is when my ankles started getting worse of course, in a much faster way.

[paw]

My ankle surgery was no fun at all! I had a badly broken ankle and leg and it needed surgery and pins to hold the bones in place and they also had to fix the ligaments which had been badly stretched. To be very honest, I am not sure exactly what they did with the ligaments. I think some had to be reattached, but I did not get a lot of detail on that. They talked more about the fixation of the bones. I have an incision on each side of the ankle, and loss of sensation by each incision.

I had to have a second surgery about 8 weeks later to remove 2 pins and they left one in place. It is still there. I was in a cast for 8 weeks after surgery one and another 8 weeks after surgery two. Then I was gradually allowed to walk with a stick for support. I was not allowed any weight bearing while in the casts, but I had to do a little because my kids were small and I had to get their lunch to them and I would take a couple of steps in the kitchen.

I had a lot of pain, some nerve damage, and I also found out that I have a lot of muscle loss in the foot just below the ankle. A test showed that I have only 40% muscle in one area compared to the same place on the other foot. Losing 60% of the muscle was a surprise, but it did explain why that foot gets sore and tired so quickly.

My ligaments are very loose on both feet/ankles and they turn in when they are relaxed. I have to think about it to keep them straight. It took a long time till I could walk with just a little pain. I did build back up to walking miles for exercise. I would walk 5 miles many days and over 10 in the summer when it was nice out.

Personally, I would only have surgery if you were injuring yourself a lot. I know mine stretched out again within a few years and that I had severe pain for about 4 years from walking. Everyone is different and my operation was to repair a broken ankle and the ligaments were secondary for me. I do think they really affected how I healed though.

[tireesix]

OK............. Its been over a year I think and I can now say I have minimal problems with it.

I gave up going back to the hospital because they were so rude. If I am having a bad time with it now, I just either rest it or throw the support back on until it sorts itself out but I rarely need to take such measures.

So, for now, I am happy, haven't fallen flat on my face in ages!

[paw]

I am so happy to hear that your ankle repair is holding up. Mine is too, but from time to time I will get a sprain. That does heal and go away with rest.

I think that even though we have HMS or EDS when something is that badly messed up there is no good option except to get it fixed. You are proving that too.