Does anyone know of a doctor who treats Fibrous Dysplasia in adults?

Posted by cpy @cpy, May 25 9:39am

Newly diagnosed with Fibrous Dysplasia this past week. Temporal bone biopsy had to be sent out to another state for diagnosis. My neurosurgeon that did the biopsy does not treat this disease. There do not appear to be doctors in the Houston Texas area that monitor/treat older adults (late 60's). Does anyone know of a doctor in the Houston or Texas area that treats adults that can give me guidance?
I looked at the medical literature and came across the names of Dr. Jad Sfeir at the Mayo Rochester Clinic in Minnesota and Dr. Leila Khan at the Cleveland Clinic. Does anyone know if they are treating adult patients with FD (not just research)? I will travel if necessary.
Thanks!

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Rubyslippers | @triciaot | May 25 3:19pm

I used to live in Houston and would recommend doctors in the Methodist Hospital system. You would still want to check out credentials and reputation, but my husband and I had very good care from Methodist when we were there.

“Houston Methodist Hospital is consistently ranked among the top hospitals in Texas and the nation, including being ranked as the number one hospital in Texas for 13 years in a row. U.S. News & World Report has also named Houston Methodist Hospital to its Honor Roll, signifying its excellence in patient care and quality.”

There are two doctors at Methodist listed as treating fibrous dysplasia. A neurosurgeon and spine surgeon, Dr. Peter Yeh, who has a clinical interest in fibrous dysplasia. He is affiliated with Houston Methodist Hospital, Houston Methodist Sugar Land Hospital, and Houston Methodist Neurological Institute, according to Houston Methodist.
Dr. Kamal Busaidy is another Houston Methodist doctor who consults for fibrous dysplasia treatment.

I would not discourage you from traveling to find the doctor you want, as I travel to Houston to go to MD Anderson. But just wanted to say that if I were in Houston, the Methodist is the first place I’d start looking for care.