I thank you for all of your comments and discussions. I feel so much more educated about my painful condition. I have scheduled my external surgery on the right side on June 19. At my consultation, my surgeon said he has never done this surgery before (only 2 intra-orals), but that he was willing, albeit reluctant, to do the external surgery. I agreed to the intra-oral at his urging when I left, but changed my mind later after getting feedback and reading the discussions on this site. So I scheduled surgery, but I'm not sure if he knows he's doing it yet. He was out of the office until Tuesday. So if he agrees, I'll guess I'll be his first external. Wish me luck!
So Cal - There are more experienced doctors in California. For example, Shaw went to one in LA that hasn't done many Eagles surgery, but is a skull-based surgeon and did a good job on him. Just FYI if you're interested.
So Cal, I found this website 4 days before my surgery and had I found it sooner, I would have taken another month at least to check out other doctors. Shaw has had an ongoing issue with Eagles and as Heidiemt says he found a skull based surgeon in your area. That being said, my ENT who did my surgery did a good job, but my recuperation period was a long time and I have had a few recurring issues, one of which may come back to push me to use a skull base physician. Our syndrome being in the intracranial area, has the ability to involve many different nerves. The styloid twists and contorts uniquely in each of us making it difficult to predict our outcome. I wish everyone would be cured first try. Better yet,I wish for no disease at all,but we all know that is not the way life works.