Got some news from a friend of mine in Detroit who also has ECD. Apparently there's a new Laser surgery/equipment for tumors, especially behind the eyes. He called and got their info, then talked to them on the phone. They do believe the procedure can help ECD patients. It may be considered experimental by insurance folks. But, who cares? Don't think I can put a price on my life!!
So, I plan on calling them, in Indiana (A Dr. Shang), tomorrow, Friday. Will keep you up to date.
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