I have never posted anything on here before, usually I read and like the feeling of knowing I am not alone in this journey.
I decided to post today as I have recently been having a “flare up” of pain and symptoms. I say flare up as I feel I can usually handle the pain pretty well, but it has been extra lately. I recently sent out my records to DR. Cognetti at Jeffereson University and I am hopeful he can shed some light on this.
I have had symptoms for years and been to many doctors and overall they all confirm it is Eagle Syndrome but no one will say that it is 100 % the cause of the pain.
I was told in early 2019 that I had ES. Multiple doctors agreed and the pain would come and go. In late 2019 I “committed” to finding a cure as I felt pretty crappy most days. Since then I went back to the ENT, Neurologists, Oral Surgeon, Yale Head and Neck Surgeons and an Ear Specialist - they all say it is ES but they don’t seem very confident
I also have new symptoms in the last year that I wonder if they are related: I have been to the ER for Trigeminal Neuralgia and had another episode if it recently. I also have Seborrheic Dermatitis on one patch on my head right where the pain from my jaw is. The Derm said it was odd to only have the one patch so bad. Anyone else have the Neuralgia or skin issues? Anyone know how long Dr. Cognetti takes to review and get back to you if he can see you or not?
Thank for letting me chat! I know its a long long process sometimes.
Hi, & glad you posted!
TN is quite common with ES, & Glossopharyngeal Neuralgia which can cause ear pain has ES listed as a cause. So lots of members have had that pain- have you been prescribed anything for it? There are some nerve pain meds which can help if you’re not taking anything?
Not sure how long Dr Cognetti’s waiting times are, I think they can be quite long by US standards; Dr Jason Newman also in PA is very experienced too; you could consider a consult with him too? It can be a long process, but getting the diagnosis is usually the hard part, so you’ve got that bit done! US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
Not sure about the Seborrheic dermatitis, can’t remember anything ever being posted…had a quick look using the search function & nothing came up. There can be some weird & wacky symptoms with ES though which can’t always be explained!
Have a good weekend too
Just wanted to give some doctor info in addition to Jules suggestions (her other information was thorough so I have nothing to add there).
Dr. Delacure in NYC & Dr. Annino in Boston both are experienced w/ ES & do not book out as far as Dr. Cognetti. Though Dr. Cognetti is experienced, he does not make ES a priority in his practice, & as a result does ES consults & surgeries only 1 day per month, thus the wait for the consult & then the surgery can be quite long (i.e. several months). You will most likely be seen sooner if you contact Dr. Newman, Dr. Delacure or Dr. Annino.
