Here is some good information about HBS doctors from our new member @YcrowY who’s been diagnosed w/ HBS.
For those seeking an appointment w/ Dr. Dewan, & who haven’t heard back from her office, she was apparently out of her office for several months but is back now. YcrowY said - I was able to ask questions and communicate indirectly through her assistant Allysia who contacted me once after they had received the referral from my primary care physician. The only other way I would think to get into contact with her without a referral would be to call the phone number on her OchsnerLSUhs web page which I did once to see if they had received my referral, but that only seems to connect you to a secretary for the main Ochsner LSU health system.
Talking with Doctor Dewan provided me with more information on experts on the west coast that can perform the surgery. She actually learned about the condition as well as the surgical treatment (the resection of the greater horn of the hyoid) during her residency from Dr. Gerald Burke at UCLA Medical Center, who pioneered the specific surgical technique that she uses. When I told her that I wanted her assessment on my situation because of her expertise, she said that he is the true expert on it (although I could tell she was being modest). But then she also told me that I was fortunate to be living in southern california because a member of her cohort who works as an ENT at UCSD’s medical center is Dr. Andrew Vahabzadeh-Hagh, and he can also perform that surgical technique.
And then the ENT at UCSD whom I was referred to from my initial ENT is Dr. Philip Weissbrod, who is the director for UCSD’s center for airway voice and swallowing. He is capable of performing the surgery, although he would prefer to exhaust all conservative treatment techniques prior to performing that surgery, which is why I am having the steroid injections first. Dr. Dewan actually knows him as well (apparently ENTs are a very tight knit community) and said she would message him with what she found/thinks about my case, but basically told me that it’s a positive sign if you respond well to the steroid injections: according to her about 97% of people with hyoid syndrome only require those injections in order to treat it and very few end up actually requiring the surgery.
So yeah, in short the individuals I learned who can perform the surgical techniques (besides Dr. Dewan) are Dr. Gerald Burke of UCLA Medical Center, Dr. Andrew Vahabzadeh-Hagh of UCSD Health, and Dr. Philip Weissbrod of UCSD Health. And Dr. Burke is the “true expert” on the condition according to Dr. Dewan.
If you have any questions, please feel free to either ask them in response to this post or send a PM to @YcrowY.
