Eagle Syndrome

37f, 175lbs, pots, mcas, hEDS

Hello everyone! So I had my tonsils out when I was 4. I was in a car accident when I was 12 where I hit the windshield.

I've had jaw pain, headaches, shoulder pain, right ear pain essentially just pain radiating up and down that whole area, difficulty turning my head at different times, and migraines since I was a child. I'm 37 now and started getting tinnitus and starting a couple months ago trouble swallowing.

I've been to pt for my neck and shoulders multiple times. I've been to tmj specialists and multiple mouthguards made that always make it worse. I've had multiple injections in my jaw that didn't help. I currently get nerve blocks I think alongside Botox for migraines. I've had two sinus surgeries one at 12 and one around 33 years old.

“Normal ct venogram of the head.

Mucosal thickening and retention cyst in the right maxillary sinus.

Bilateral opacification of the stylohyoid ligaments extending almost to the hyoid bone. This would correspond with the history of Eagle Syndrome.”

Previous ct scan around 32 yo incidentally found my styloid process bones were elongated and that's when I learned of eagle syndrome but everyone shrugs when I ask about it (dentist, ent, PCP, etc).

What specialist do I see or what else can I try to help? I'm miserable and I think it may be a cause for things that have effected me my whole life as I have tried to treat everything with no result. Except the Botox I do get less migraines but still have daily headaches/pain. Thank you.