Why is it so hard to find a doctor that Treats Eagles and Ernest Syndrome?

I have looked in SC and my oral surgeon has too. There is no one that has seen or done surgery on Eagles Syndrome here. There is a Dr Depenas as CMC that has seen 5 case but has not removed or done any surgery. I have been recommended to go to Kentucky to Dr. Okeson at the U of K. It has taken me four years of constant head pain, 24-7 mostly one the right side. Have had botox, laser and been seen and put on anti seizure meds, anti depressants, anit anti inflammatory and opiates for pain. i have been seen at John Hopkins, NY, Wake Forrest. Seen physical therapist and chiropractors. Ive gained so much weight just doing nothing but nursing my pain. I am really done. This new neurologist thinks this is what it is. All the way to Kentucky really? I do not have throat pain. I have ear pain, all around my jaw and from behind and infront of my ear to my jaw. I can press on my ear to relieve it somewhat. And no I do not have TMJ. I praying that someone can lead me through this. If it was not my saving faith in Jesus I do not know how to make it through. I am a 46 year old mom of 4 kids. any advise but spell correction. Please help. I am really done!

Have you looked at the list of doctors on this website? Perhaps there is someone closer than KY.

It’s a done deal now. I’ve looked and no one comes up. I’ve researched and so has my oral surgeon and neurologist. Thx though for the reply.

You are right and doctors think this is rare but they are not looking for it. They say fbromyalgia, trigeminal nerve pain, glossopharyngeall nerve pain, acid reflux, TMJ. The fact is that all pain is caused by something, but they just have never been trained in Eagles because it is rare. On top of that, even if they do diagnose, they are afraid to operate because of the nerves and arteries in the way. The discussion "Doctor's Spreadsheet Update 05/11/2014" is my most recent post of doctors that have helped our members. I have searched every discussion on this forum back to the beginning and these are the ones that I have found. I am sure that I could have missed some and dozed off while reading years of discussions, but I hope members would continue to let me know of any that I missed.

The South East and mid west are pretty lacking and the majority of doctors are in CA, PA, OH. One in TN, a couple in FL WE ALL WISH WE COULD DO MORE! Yes, you will have to travel, but check out the spreadsheet that is posted in the discussion that I mentioned above. Dr Cognetti, Dr Samji, Dr Forrest seem to be the ones most experienced (based on member reports) and they are in PA, CA, OH respectively. If you find that Dr. Okeson works for you, please let us know. Others will appreciate your help.

its hard to find legit Docs because its Rare. I had to find an Oncologist specifically one that looks for Cancer in the neck. He ultimately was able to snip my Syloids.

Have you had a CT scan of the neck yet ?

Can you please give us dr. Forrest’s contact information?

He’s on the doctor list (the US list) under Doctor Information.