Hi alwaton,
I think I was able to sent you a message privately with my personal email and can talk more at length. One thing I can confidently say openly is don’t go to University of Washington. I went to 2 pain centers in Seattle (one was in Edmonds) The Seattle based pain doc (after treating me for about 2 years with so so results) finally sent me down to Tacoma to see a neurologist by the name of Patrick Hogan. He specializes more in all types of injections in the neck, ears, skull,etc. He was the one who after 5 years of going everywhere brought up Eagles. Thats when I started doing online research when I saw my PCP and went in well armed. I also was in a very acute pain flair and not in good shape and needed pain meds. I had to twist my PCP doctors arms to get the CT scan ordered even with the neurologist’s suggestions. I also brought in a peer reviewed article on diagnosing Eagles and that a CT scan without contrast was the gold standard for diagnosis. He capitulated and gave me the order, said it was unlikely I had eagles and chalked it up to TMJ. I did get my CT scan and it did indeed come back with elongated styloids and already had a cone beam CT from UW that showed calcifications in my neck (which I also showed PCP). I would start with your PCP and press hard for the CT and do highly recommend Dr. Hogan. He may be able to order the CT scan but it will take you several months to get into see him. He is well worth the wait. Feel free to contact me anytime privately.
