I still dont have a diagnosis, currently in the process of finding a new ent since mine left his practice(was no help anyway) but ive been dealing with whatever this is for 3 years now…it varies in feeling but the last few mo thes have been focused on the back of my tongue by my tonsil area on my right side. I can’t feel a bone sticking out but i feel like i have lumps or swelling back there, also gets really dry. I have pain in my tmj and under ear along jaw, also some ear pain or itching. The side of my tongue also gets itritated and my neck and down my back also hurt. Im at my wits end. I constanly feel as though i have cancer. I had a ct done with and without contrast when it first started 3 years ago and last nasal scope in 2020. Nothing showed up but they did not heck my styloids either i asked and the response i got was they didnt check. Idk
Hi Sara!
Welcome back and I’m sorry to know you’ve gotten no answers so far. Your symptoms are all ones we see with ES but the dryness can have other causes. The neck/shoulder/back pain can be from the accessory nerve. Tongue is likely glossopharyngeal nerve, throat can be vagus nerve/glossopharyngeal. TMJ, jaw & ear pain come from the trigeminal nerve. These are some of the cranial nerves that get irritated by ES. There is a good YouTube series called Two minute Neuroscience which has a 2 min video about each of those nerves. You might want to look those up & watch them.
Your best bet for a diagnosis is to call Dr. Cognetti’s office & see abt getting a consult w/ him. If you don’t live near Philadelphia, he will do a video consult. Another good ES surgeon in Philly is Dr. Newman. These doctors are both on our current Doctors List Doctor Lists -- no discussion - #5.
I hope you’re able to make some headway getting a diagnosis soon. 
Thank you very much! I did try to call Cognetti last year but they told me i had to come in for a first appt. I live 3 hrs away. So i will try the other one to see if hes willing to do a video consult and send my scans to him. I appreciate this forum in so many ways!
If you have CT Scan with and without contrast, that is 3/4 of the battle. You may want to ask the ordering doctor of that past CT to request the radiologist recheck your scan and evaluate for Eagles Syndrome.
I had to fly out of state to get to an ES specialist and many of us do. 3 hour drive for a consult with a specialist is a lot less than 3 years of problems and pain. Going to an ENT who is knowledgable in ES is worth the effort.
You are absolutley correct id rather do 3 hrs than out of state. Its just pulling teeth to get anyone to check the ct scans 
Sara,
I’m sorry for your experience w/ Dr. Cognetti’s ofc last year but know for a fact Dr. Cognetti does video appts now. We have members from Canada who have had recent video consults with him as a precursor to their ES surgeries. I don’t know if Dr. Newman does video consults. If he doesn’t, please consider trying Dr. Cognetti again. He does his video calls & ES surgeries only one day/month but one of our Canadian members noted that he is adding an extra day in April because of the number of recent requests he’s received for ES consults.
If your willing to pay $500-$600, you can get Dr, Samji in CA to review them within about 2-3 weeks and get a video chat very soon after. If you insurance allows you to travel, it should be covered by insurance. YOU dont need to travel there for surgery but it does get you an official diagnosis.
Yes i absolutley will! I know they wanted a diagnosis first as well but if no one around here knows anything about this i wont be able to get that. Ill try contacting him at the end of the week to see if i can set up a video conference with him and am able to send him my cat scans from 3 years ago. Thank you!