Hi & welcome to the site!
There’s lots of info about common symptoms & possible explanations in the Newbies Guide Section which you might find useful if you’ve not seen it already, your symptoms could be caused by the styloids…Here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
A CT scan is the best way to diagnosed ES, but they can be seen on a panoramic X-ray, so if you can get a copy of yours it might be useful. I’m not sure of the US system, whether your PCP can send you for a CT or does that have to be ordered by a specialist? (A CT needs to be from the base of the skull to the hyoid bone & should be requested to evaluate for ES)
If that’s the case, perhaps Dr Tanaka could order you one, or Dr Rajasekaran otherwise. (a head and neck surgeon is a good bet to see as they operate in the right area & quite often remove the styloids routinely to give them more access to remove cancers etc)
I’m sorry that Dr Leahy doesn’t treat ES- all the names on the list are given to us by members who’ve had surgery with them, but the original list was compiled a while ago so maybe he doesn’t do the surgery any more. I’ll remove his name from the list!
And frustrating for you that Dr Cognetti’s office weren’t too helpful- I don’t think I’ve heard of others experiencing that…maybe some of the members who’ve had surgery with him can let you know what scans/ reports etc he likes to see.
There’s info in the Newbies Guide Section about treatments- there are some medications which can help, and also some members have had lidocaine/ steroid injections into the tonsillar region which has made thigs easier for some. PT can help with loosening muscles which have got tight because of the pain, & sometimes bad posture can worsen symptoms. Be careful to see someone who is aware of ES though as some exercises or manipulations could worsen nerve or vascular damage. Surgery is pretty much the only real ‘cure’, but other treatments can keep symptoms manageable, so some people find they can live with it & don’t opt for surgery.
TMJD & ES together are pretty common, there have been several discussions about this so you could do a search for that.
I hope this helps, and that you get somewhere towards a diagnosis with the doctors you’re seeing!
1 Like