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Author Topic: Surgical options with Hypermobility  (Read 3871 times)

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SL99

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Surgical options with Hypermobility
« on: December 16, 2002, 02:15:50 PM »
I have either Marfans or EDS VII ( awaiting conformation) and suffer with severe joint hypermobility, pain and very frequent dislocation/subluxations of all my joints. First thing I do when I wake up is pop things back into place!  ::)

My main trouble though is a very problematic left knee, where my connective tissue issue is made worse by a major deformity of the femur and knee joint. As a result my knee cap is permenently sitting about 50% subluxed medially and regularly dislocates taking trip up, down and around my leg. Primiarily though it takes the rare option of going medially and flummoxing the docs at ER!

It subluxs/dislocates with ridiculous ease and even just turning over in bed is enough to leave me in agony and screaming the house down! I'm unable to weight bear on the left leg at all now due the the instability and pain in the knee, which in itself cause problems as my right leg isn't strong enough to take the extra strain. In protest it has now started to sublux at the hip, knee and ankle and throw an occassional stress fracture too...leaving me very immobile and pained.

I desperately need to stabilise my left knee, but my physio's are unable to work the area's that need stengthening without dislocating my knee! As a result of my condition I've been told that the re-rotaional femoral osteotomy surgery I required isn't an option any more. Other surgical procedures have been gradually ruled out in case too including all soft tissue options and removing my patella. The former because of the connective tissue weakness and the latter because it would weaken the knee too much and I'd just dislocate the ligaments anyway.

I'm not even sure that a TKR would work, as I'd probably just dislocate the new components, although I'd be prepared to try it or anything at this stage. :'(

So here I am up the creek without a paddle needing something doing to my knee but nobody has a clue what. I'm even willing to consider drastic measures, even to the point of amputation. I know that sounds very major but I'm in so much pain and so debiliated I figure it couldn't be any worse that I am now...

I'm so sorry for whining away to you all - especially when you all have problems of your own many far greater than mine. I'm just getting so tired of struggling, managing and being in pain...

Thank you very much for being patient and listening to me. I apologise again for my major moan...but I promise that's it over with for another year now!!  :)

With love to all,

Jo
xx

Offline Shazinoz

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Re: Surgical options with Hypermobility
« Reply #1 on: December 16, 2002, 02:42:35 PM »
Jo,
Have you heard of Professor Rodney Grahame?? he is a Hypermobility Syndrome (connective tissue disorder) specialist, he is in London. Maybe it would be worth trying to get in to see him and/or contacting him. He may at least be able to recommend a OS or give you a final diagnosis.
Here is one of his web sites, that includes info on where his Hypermobility Clinics are:
http://www.hypermobility.org

Hope this helps MAYBE...
« Last Edit: February 18, 2010, 07:42:55 AM by The KNEEguru »
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Helen_uk

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Re: Surgical options with Hypermobility
« Reply #2 on: December 16, 2002, 07:40:23 PM »
Where in the uk are you from.
My os in Sheffield is an expert in this as he has had alot of experience mostly from me please feel free to contact me
H xxx

SL99

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Re: Surgical options with Hypermobility
« Reply #3 on: December 16, 2002, 08:49:19 PM »
Thank you Helen - that's most appreciated. I'm willing to try anything at this stage and my GP and OS have agreed to refer me for another opinion in the New Year if I can find someone I feel may be able to help.

I actually live in NE England not a million miles from Sheffield so the OS you mention could be a real option for me. Thank you so much again Helen.

It sounds like we have a fair amount in common sadly - and I have the distinct feeling from your kind posts so far though that you amy well get very sick of me in the coming months!!  ;)

I will drop you an IM with my email address and thank you once again for your time and generousity.

Love.....Jo
xx

P.S. Thanks for the mention of Prof Grahame too Shaz :)
« Last Edit: December 16, 2002, 08:52:45 PM by SL99 »

Helen_uk

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Re: Surgical options with Hypermobility
« Reply #4 on: December 18, 2002, 08:54:14 PM »
Hey dont worry about me getting fed up I wont I get fed up of being on my own and not seeing or hearing from people, a friend I havent heard from in a year mainly because she moved in with her new man.... said in her card she missed me but hasnt rung becaue she thought I would be cross at not being a good friend  what rubbish I just missed her and would ahve loved to have heard from her.
So e mail away.
H xxx ;)

SL99

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Re: Surgical options with Hypermobility
« Reply #5 on: December 20, 2002, 01:43:42 AM »
Thanks Helen - you may live to regret that though!!  ;)

Seriously I really appreciate everyones support, kindness and help since I found this site - it and you have been a complete Godsend to me.

Guess I got a really neat Christmas present from Santa this year!  ;D

Love to all...and Helen, warn your email server in advance!  ;)

Jo
xx















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