Suggest Treatment For Parry Romberg Syndrome

I was diagnosed with parry rhoberg syndrome by U. I was diagnosed with parry rhomberg in November. I had an upper/lower jaw surjery done by Kaiser in1999, and never recovered because of the remaining and debilitating soft tissue problllems the bone growth had caused. I had to go on disability, got back into kaiser hoping they could figure out what went wrong. no answers. So I swithed over to the U.C. system after being told by an outside maxofacial group they would be the only provider in CA who could help me. I stepped right into an interfacility political situation. The U.C. doctors don t want to get involved in any malpractice suit, and I can t find a doctor who works with parry rhombert syndrome. I recently had an active period, it was the worse thing I have ever experianced. Can you tell me where I can get help?