By Michelle on Friday, June 02, 2000 - 12:31 pm:

doctors have been treating my knees now for some time, I have had surgery on my right knee for Chonramalasia (I have been diagnosed EDS type III), with very
hyper-mobile paetalas, one doctor says I also have early oesteo-arthritis. They are now trying physio (when it starts),shock absorbers in my shoes, and they reckon
more surgery, especailly on my left knee to "clean the knee cap and remove the cartalidge. I have been taking tramadol, now with very bad side effects. I do find
ginger helps, but would really appreciate any advice before I go mad!.

By John on Friday, June 02, 2000 - 12:32 pm:

I am a little concerned about you thought to wear a brace. Unfortunately the compression of the patella on the bony surfaces of the femor might actually irritate the
problem. Your HMS aggravates this kneecap condition as hyperextension can allow the kneecap to sit too far anteriorly. This then allows the kneecap to ride over
the femoral ridge during activity. This is the most common cause of your condition. Treatment is not quick and often is by a combination of the surgeons and
physios. find a physio who understands your problem. If you cannot, then instruct your physio that you require strengthening of the hamstrings, adductors and the
medial quadriceps. this last one is still open to discussion as to the possibility of this, but nevertheless it worth trying. It is important to make the hamstrings
hypertonic to reduce the knee hyperextension. Best of luck.

By Mandy on Friday, June 02, 2000 - 12:32 pm:

I have tried a lot of tablets over the years but found the only thing they did to me was give me the side affects. Try MOVELAT GEL it really works for me, hope it
works for you.

By Sue C on Friday, June 02, 2000 - 12:33 pm:

This might sound like a step backward, but have you tried knee braces?

I had sharp pains, like someone sticking a knife in the back of my knee & knee cap and twisting. A brace that helped the knee cap track properly helped.

The brace was basically a sleeve-style Ace bandage with an open knee hole. You then attached another strap to it and aligned this hard chunk of plastic to rest next to
your knee cap. (the brace had the word "patellar" in the name)

The pain basically ended with this brace, but I had to keep the strap so tight that my lower leg was turning blue. I compromised by using the brace for serious
walking (and marching) only, then taking off the strap, pulling the sleeve down to my ankle, and elevating my leg -- or just taking the thing off -- when I was mainly
sitting.

Ace neoprene sleeves with open knee holes add some warmth and a modicum of support, without turning your leg blue.

Good luck and let me know how you are doing!

Also -- would you recommend the surgery to those of us with unstable kneecaps? (Mine have dislocated while I'm asleep, in addition to when I'm walking or doing
anything else.) Did your surgeon REALLY know about HMS/EDS before operating?

By Michelle on Friday, June 02, 2000 - 12:33 pm:

Thanks for the tip on the brace. I already have one brace, but it is only any good if the knee is in a 'stable mode' (not very often). I shall give it a try. Unfortunately,
things have gone down hill recently. I went to sit down the other day, and somehow managed to twist my knee, I am now in plaster from toe to thigh!! Hopefully I
can have it taken off in 2 wks when I see my specialist (ha ha) again. Cant wait to see Professor Grahame in London soon, my GP has now refered me at last.

By Sue C. on Friday, June 02, 2000 - 12:34 pm:

A cast for a twisted knee? Sounds drastic. If that happened each time one of us dislocated a joint, we'd all look like crustacians.

And what is your definition of "stable mode"? (I don't think I have one.)

Are there other remedies?

I went to another doctor today. He prescribed yet another type of neoprene brace. Those things just don't stabilize my joints. Are there other braces that DO work
and take away the insecurities of twisting/dislocating?

By Janie on Friday, June 02, 2000 - 12:35 pm:

Hi!

My understanding is that the only way to truly stabilize a knee is to be fitted for a custom brace made of graphite. That's what I did, anyway. They casted my legs in
plaster, waited for the casts to set, removed the casts and then built the braces. These require a prescription from a doctor and are built by an orthotist.

If you'd like more info, you can email me.

Best wishes,
Janie

By shelli on Sunday, January 21, 2001 - 07:58 am:

Hello!
I have just been reading your e-mails, my first visit to this site. I am 16 and get a lot of trouble with my knees. I have not been diagnosed as having hypermobility, but it is the closest thing that describes the symptoms that I get. I have been in plaster 3 times from the knee-cap dislocating and 2 years down the line, my knees still have to be strapped to hold them in. I am in constant pain with them and all my muscles. The specialist at the hospital just seems to want to operate and he is not interested in finding out what is really wrong. they will not tell us what is wrong with me.
Is there a medical test avalible to prove if you have hypermobility?
Help!

By Patty on Tuesday, January 23, 2001 - 07:27 pm:

Hi, Shelli, These problems are called "syndrome" because there is not a set test to see if you have hypermobility. There are guidelines and if you have enough of the "criteria", you are diagnosed as having HMS. Some forms of EDS are identifiable with genetics testing. Just by reading what the discussions have to say, you should be able to go to your doctor and ask some intelligent questions that will at least stimulate his thinking. You may want to check out some of the links on the opening page to see if any other symptoms fit you. Good luck!