Getting a correct diagnosis

I need to ask a question from people experianced w/underdiagnosises. I had upper/lower jaw surgery for “tmj” in 1999, and was told everything was fine I would heal perfactly. I never healed.
Let me first say that my condition began as an odd sennsation, on my face. Then I began to loose the feeling of my lips, then the sensation began having a pulling feeling. I recently, after getting into another HMO, found out that my condition is actually Goldenhar. That sensation, well, it began at 13, and the reason it was never taken care of (as I found out, is that the HMO which did the surgery did not have the faciluty medical protocol to do soft tissue work), so, they went ahead and did the orthagnostic part of the surgery without checking for soft tissue damage. They should have sent me in to the state system, which is where I am now.
The nuerologist at the new state system is covering for the initial HMO-and I am on my way down. I have been struggleing to keep myself stable as I look for the correct doctor doing surgery/diagnosis for “Goldenhar Atrophied Triangularis”-I am going down!
My life is in danger, please help! I don’t want to play politics, I just want medical help-the surgery for this condition-Please Ben…Advise me about this I AM DESPERATE, and trying to stay stable and healthy while I search for help everywhere I can.
No-one tells you what to do when faced w/an unethical doctor or clinic. And you feel yourself sliding into a nuerological maw…
Please help BEN!
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I am sorry for what you're going through.

Have you tried messaging other patients or parents of patients? There is some Facebook page for Goldenhar in children, and you can Google for other patients. I am seeing some parents asking in parenting forums. They might know of good surgeons or doctors.

You probably have to travel to a specialist. Would you be able to get a referral from a doctor you already see, or can you see a new doctor about the referral?

Kathy, there is something I am not understanding from your story. Goldenhar is a birth defect, yes? and should have been readily apparent when you were born. Also, I'm not clear from your story just what the medical issues are. When you say struggling to keep stable, are you talking about pain levels? loss of muscle control? Inability to swallow? I need to better understand how to help you.