After the diagnosis - how do you find an experienced surgeon?

I want to find a surgeon with experience. Then I can work on the insurance company to get them to pay for most of the procedure.

This site maintains a list of doctors/surgeons who have treated ES patients. You can start there:

Otherwise, I’d suggest calling hospitals and clinics nearby and asking if they have any surgeons with experience with ES. This can be a long process and require travel, so good luck.

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Yes, check out the doctors list first, otherwise you can try Otolaryngologist/ skull base surgeons as they’re used to operating in that area of the neck. ENTs can be helpful too, or Neurovascular surgeons who operate on the head and neck.
Good luck!

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Thank you for the quick response. Looking at the list, Seattle options look good. It will be a while before they finish all the reviews etc necessary to make any decisions.

MY ENT just approved that I can consult with the UNM medical. I wrote them to see if they have experienced surgeons with ES and did not get a response. Hopefully my doctor will, but I doubt I will get treated here.

Hi WWU - do you have any update on your consultation? I am in Seattle, and am a newbie. I am waiting for preapproval for a CT scan, although my ENT doc suspects ES. Just wondering where to go for help after the scan (assuming it confirms ES). Thanks!

Meet with a specialist at NMUniversity on Tuesday 9th. Dr. John, I will see what experience he has. NOT having anyone do anything if they are not very experienced.

Best of luck!

I had my visit at the UNM Hospital and the doctor reviewed my scan and said I would not benefit from the operation. I am not suffering any pain. He said the operation has a lot of side effects. But when I asked how many operators he had performed and he said 0. So I will be happy to hope nothing happens.

There are some risks with surgery, so if you’ve not got symptoms then perhaps that best… And definitely wouldn’t want to be a surgeon’s first patient!