By Beth on Monday, June 05, 2000 - 04:39 pm:

He gave me Physical Therapy for my knee and said that I was Subloxing(sp) my knee cap. He said it happens in alot of women but never mentioned it's possible
association with the HMS. What do you guys think? Is this guy worth my trouble or is he going to be nothing but trouble? He was nice enough, but......

By Sue C. on Monday, June 05, 2000 - 04:39 pm:

I know all about subluxing knee caps and frustrations from doctors because of it!

My left knee cap sat 1/2" outside of the groove and tilted at least since 1987 -- I have the xrays to prove it! I saw several "specialists" around that time frame. One
of them noticed that I had other loose joints and sent me to a pediatric rheumatologist who claimed it was HMS. (Age 20; 1989)

10 years and some research later, I discovered it was actually EDS. About 8 doctors later, I finally had a confirmation that it was EDS!

Anyway, subluxing (i.e. partially dislocating) knee caps is fairly common in women around age 20. Many grow out of it. Apparently it's a result of puberty that nature
tends to correct as you age.

PT, especially focusing on quad strengthening, is the best thing for it. All I got was a brochure that said to sit & kick your leg out. Had I gone to a PT 10 years ago,
perhaps I could have avoided or postponed surgery and maintained a more active lifestyle in my late 20s.

I know now that a GOOD PT will take your joint instability into consideration when assisting you with exercises. I also know now that you are supposed to be very
slow and deliberate in those particular exercises, and you should not hyperextend while kicking -- which they failed to tell me back then!

I tried PT before surgery. My right knee cap started responding a little. The left was about 10 years further "gone" and kept right on moving from subluxed (its
normal state) to almost dislocated during each exercise. My PT even was in favor of the surgery!

Good news -- the surgeon and PT are being very cautious of me because of the EDS! And I'm healing faster than a "normal" person.

My suggestion: Talk to your ortho surgeon about your other joints. With the "quacks" I saw, I called first to see if they had EDS/HMS experience. Several doctors'
offices turned me away immediately over the phone, saving everyone time and frustration. The "quacks" focused STRICTLY on my left knee, without the context of
HMS/EDS.

I felt comfortable immediately with Dr. Zaslav because he had some experience with EDS/HMS and knew immediately what it was and the precautions to take. He
and my PT view my knee problems as a result of EDS, not an isolated issue. I can finally relax around these 2 and obviously trust them with surgery and recovery!

My PT also gave me the advice that you should ask several different PTs in your area who the good surgeons are, since they see the day-to-day recovery of the
patients. That's how I found my doctor!

I hope this offers some help, from someone who has been there, done that, got frustrated, but finally found trustworthy honest people! (I'll be going thru it again when
I move next month.) Feel free to contact me if you have other questions or are located in Virginia.

By Bianca on Monday, June 05, 2000 - 04:40 pm:

I remember that I read something about a higher risk for HMS people to subluxate their knee caps.
I would say give him a try.
I wish you all the best.

By Gwen on Monday, June 05, 2000 - 04:40 pm:

Beth, why not give him the benfit of the doubt at least short term. Have you mentioned HMS to him? If so, what was his response? Try him out with some of the
articles on HMS and see his reaction, then decide whether you are wasting your time. Good luck.