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.
I was recently diagnosed with bilateral Eagle Syndrome this past December. My symptoms I believer began when I was diagnosed with Otosclerosis back in 1990. The disease causes calcification of the bones in the middle ear. Interesting that with Eagle Syndrome the styloid becomes calcified also. I wonder if there is a connection. Anyway I suffered for years with vertigo and dizziness mostly until recently after a tooth extraction one year ago this March I began having right inner ear pain, right jaw and neck pain. I was told it was TMJ. I had a mouth guard made by my dentist but this seemed to make the pain worse. In addition I felt a lump on the right side of my neck and was having swallowing pills. Several visits to ENT with no clear diagnosis until I was seen by a wonderful nurse practitioner at an ENT visit. I asked her if she would please order a head CT scan and a neck CT scan. And this was the first ever mention of Eagle Syndrome. I have an appointment with Dr. Anino in Boston. I also sent my imaging studies to Dr. Cognetti but do not have an appointment until July 9, virtual visit. He is booking way out. There is an Eagle surgeon in Chapel Hill NC by the name of Dr. Trevor Hackman. He uses robotics to do the surgery. I wish you the best. I feel so fortunate to have found this site.
Best,
Lydia
@lydiah - Dr. Hackman seems to have stopped doing ES surgery via the DaVinci robot & does his surgeries manually now. He is the only surgeon on our list who routinely does bilateral ES surgery all in one surgery.
That’s interesting having calcification in your ear as well- we have had members who have had calcifications in other areas of the body, bone spurs etc, so it may be there’s something metabolic going on causing this…hypercalcaemia or some sort of autoimmune condition. If I remember right one of our members @Henrik had a family history of hypercalcaemia…
Thanks for that information about Dr. Hackman Isaiah.
Jules, I think there may very well be some correlation between otosclerosis and Eagle syndrome in regards to the calcification. But I’m sure there is a very small sample group to study this.
Lydia
