By Sara - UK on Sunday, June 04, 2000 - 03:35 pm:

I am 27 year old female EDS sufferer. I have had extensive reconstructive surgery on my left leg including; lateral release (unsuccessful) 4 osteotomys to realign
boney deformity, co-lateral ligament reconstruction, femoral leg lengthening procedure which re-fractured and would not unite. Due to this I was faced with a choice
'amputate or replace'. I had a J&J TC3 total replacement joint adapted for me, and thankfuly, to date still have my leg. I have had a lateral release (unsuccessfully)
on my right knee. My medial ligament has now ruptured in my right knee. My orthopaedic is at a loss of how to treat this knee, as bracing does not work, and my
ligaments do not heal. I have had a total right wrist arthrodesis (fusion), due to gross instability and ligament disrepair (after 3 unsuccessful surgeries), and am
scheduled later this year to have a distal radial-ulna fusion. What I am REALLY desperately searching for, is an orthopedic who has reasonable experience with
EDS and knee instability, as even the replacement joint is grossly unstable. There is no surgery that I have had on my left leg that I would even contemplate on my
right leg. I am also open to any suggestions that may avoid the DRUJ fusion as I feel that losing the forarm rotation will adversely affect my elbow, as the ulna also
dislocates here. I would be extremely grateful for anyone offering any info. what-so-ever on this. Good luck to everyone who is also suffering, and I hope everything
works out as you wish for it to.

By Lady Patrick on Sunday, June 04, 2000 - 03:36 pm:

I was wondering if you have heard of what I believe is new procedures (techniques) for hip and knee replacements/ repairs. I heard about it around 2 years ago, and
it was relatively new to the news.

It is a technique that uses corral (spelling?) in sea corral, as a temporary brace, or devise, rather then the old materials used to stabalize the bone, until healed. I am
not sure what the old ones were, but they had to be removed (meaning additional surgeries) once the healing, regrowth or fusion was successful. The improvements
in using coral is that it encourages and speeds up growth of human bone matter. It also recedes/disintegrates to match the speed of the bone regrowth rate. It
disolves naturally and is absorbed by the body without harm which cuts down on surgeries, since the piece doesn't need to be removed.
Just a thought. I live in Canada, and haven't heard much of an update on this, other then to know it is being used still, with better results.
I am unsure of where these types of procedures were taking place.

Lady Patrick

By Sara - UK on Sunday, June 04, 2000 - 03:36 pm:

I have heard about corral being used to 'grow' new eyes, but not in orthopaedic surgery. This is deffinately something that I shall be investigating with my surgeons.
Many thanks for your help. Keep smiling :-))) and BIG hug

By Sue C. on Sunday, June 04, 2000 - 03:37 pm:

I'm currently seeing Dr. Zaslav in Richmond, Virginia. I plan to have my first knee surgery done in a few weeks by him.

Dr. Zaslav has seen other patients with HMS/EDS. It's probably worth your time to contact him and see if he knows others in your area who would handle your
situation. Or even see him in the US. A number of us travel 2 hours to see him, right past nationally-known university hospitals!

Also call Linda at www.ednf.org for info on doctors or other info she can share.

There is a posting somewhere on this forum from a woman older than us (I'm 30) who had a knee replacement and it basically cured the hms in that joint. Do a
search on the forum and contact her for more info also.

Good luck!

By Sara - UK on Sunday, June 04, 2000 - 03:37 pm:

Hey Sue
Many thanks for Dr Zaslav's details. I have just returned from the psot office where I have posted a letter to him asking his advice. I really appreciate your help. I
wish you the very best of luck with your forthcoming surgery, and hope everything turns out just as you want it to.
Very Best Wishes, Sara

By Sue C. on Sunday, June 04, 2000 - 03:38 pm:

And good luck to you too! Let me know how it turns out.

By Hilary on Sunday, June 04, 2000 - 03:38 pm:

Take care

Hilary

By Agnes on Thursday, November 16, 2000 - 09:16 pm:

Sue

How did your knee surgery go with the doctor in Richmond?

Am having knee/ankle problems now and trying to sort out what to do.

Agnes

By Joanne Simmonds on Thursday, July 26, 2001 - 07:12 am:

I am a 25 yr old female who lives in England. I found out i have hypermobile joints when i was 11 and have had 6 operations on my knees. my last 2 operations was 2 have my knee-caps removed and know i am even worse off than before. i use a wheelchair now due 2 the pain i have when i walk. i was wondering if there is nething else that can be done 4 me as in england my surgeon says i have just got 2 live with it 4 the rest of my life and face the fact that i will be in a permanet wheelchair. thanxs 4 taking time out 2 read this. Jo xx

By Emma F on Thursday, August 02, 2001 - 01:22 am:

Don't give up hope. Ask to be sent to a pain management clinic, for if this is true then you need to be able to live with the pain and cope with it as best as possible. My mum recently went on a four week pain management course, and she benefited from meeting others in the same boat as herself and doing things she couldnt manage before.

I hope this helps Joanne

By Mickey on Monday, August 06, 2001 - 10:38 pm:

Hi Joanne,

You dont say where in England you live, but right here in London is Proffessor Grahame!! What better doctor on hms can you ask for? He 'works' out of Arthur Stanley House, (3rd Floor) in the Rheumatology Unit, Tottenham Court Road. It is one of the London College Hospitals. Maybe you can get a referal to him? Got to be worth a shot. He will send down recommendations to a local doc so making treatment easier. I hope that this helps. Let us know how it goes, I'll keep my fingers crossed for ya.
Mickey

By Joanne on Sunday, August 12, 2001 - 07:58 am:

thank you for all your help in this matter. I live in the midlands and all the hospitals and surgeons have been contacted in england ansd they all come up with the same answer. "theres nothing else we can do im sorry" thank you once again mickey and emma xxxxxx

Joanne :0)