Anyone diagnosed with Eagles Syndrome: Where and what treatment?

@kathy513, Hello. In 2017, I suffered with increasing one-sided ear/throat pain, I was diagnosed with Eagles Syndrome (ES). This, after several nasal endoscopies (NE) produced numerous false diagnoses. After insisting on a CAT Scan with scan reluctant doctors, (one doctor insisted I "Did NOT have cancer) the diagnoses came back ES. Praying to our creator for an answer, finally produced the truth. Praying gave me the definite feeling that ES was not my problem.
How several radiologists can read a CAT Scan and get it so wrong is suspicious, to say the least. Finally, an Indiana University ENT did another NE and saw the tumor down by my vocal cords. Again, how several prior doctors and several NEs produced conflicting and wrong diagnoses is very disappointing. This University ENT performed the same exact NE as the others had done, yet he saw the tumor immediately. The tumor of the "Pyriform Sinus" was extremely visible on the scan, which was shown to me on the medical device screen.
So, obviously my advice to anyone with these diagnoses, is to continue on with second, third and even fourth opinions. The ES diagnosis may just be a "grasping at straws" diagnosis.
If you are interested, there is much of my journey written in my profile posts. To clarify, the other diagnoses were everything from "arthritis in the neck," to "needing a tonsillectomy." I do not even have tonsils.

I was diagnosed with bilateral ES approx 2 years ago. I was referred to to the University of Minnesota and saw Dr. Hamlar. We made the decision to try a more conservative treatment which consisted of manually fracturing the styloid on the right side. It was a same day procedure and the results for me are great so far. It actually felt like my entire jaw was shifted back into place. We haven't done anything on the left side as the symptoms so far are mild. Time will tell.

Thank you, may I ask what your symptoms are or were?
The Mayo Clinic has it on a list of diagnosis that I thought was Occipital neuralgia because my pain follows that path. I am being treated for structural/ arthritic pain with inflamation at C1 C2. So far I have had an injection at C2 Dorsal Root Ganglion and I am scheduled for another. If it does not help then they will look at ES as causing the symptoms. How did they fracture your syloid?
Currently I have a stabbing pain in my throat when I reach or bend over and then it lingers when I swallow for about 30 minutes.

Welcome @kathy513, in addition to the helpful replies you received from @thomason and @sanderson7635, you may also be interested in this related discussion:
- Eagle Syndrome: https://connect.mayoclinic.org/discussion/eagles-syndrome/

I had the constant sensation of something stuck in my throat with pain that radiated to the ear and hyoid bone. I had a hard time swallowing. It took 3 visits to the ENT over a year to figure it out.
The elongated styloids are palpable in my throat. They put me out and pushed on the styloid until it fractured.

I was treated for Eagles Syndrome in 12/22. There’s a Living with Eagle forum website that has a wealth of information and patient experiences. They compiled a list of surgeons who treat ES.
Best wishes!

Welcome @noble, Thank you for sharing this great resource. I thought I would share the link for you to the Living with Eagle Patients Support Community - https://livingwitheagle.org/ since new members are prevented from posting links for a short period of time to protect our Connect community from advertisers.

I think you might have to join the Living with Eagle site before you can see their list of surgeons or doctors who treat Eagle Syndrome. You mentioned you were treated for Eagle Syndrome in December 2022. Did you have Styloidectomy surgery?

Thanks for your comment. I have a user account with the Living with Eagle Forum. By engaging in their Forum I was able to find a physician to treat my ES. It was a successful procedure.

For the past 4 years, I’ve been really struggling. I’ve gone through so many doctors, yet none of them will help me. My doctor and local ENT said I have symptoms of Eagle syndrome. I got a scan back in December and my ENT said I have an elongated styloid process with calcification starting in the middle of the ligament rather than the top, which he said was very rare. He then sent me to this surgeon in hopes he could give me a styloidectomy. He was supposedly the best around me. I just received news that the doctor wont give me surgery since he works with calcification from the top of the ligament and that’s just not my case. Instead he is recommending an injection, in which he isn’t sure that will even help. I’m reaching out in hopes to find someone who can help me. I try to describe my symptoms and people just think I’m crazy. It messes with my nerves bad. My symptoms include: feeling like there is a large knife or foreign object in the back of my throat, tingling on the back of my head, neck and spine, my throat feels like it’s closing and it gets hard to swallow and breathe, it gets so bad it leads to my whole body uncontrollably shaking. I am always in pain, the best I can explain is it’s like a sharp stabbing pain in my neck. My doctor has perscribed me gabapentin. It helps a little bit, but the pain is always there. I live off that medicine, without it the pain gets so bad I feel like I am going to die. I can’t even get out of bed when I don’t have my medicine. I don’t want to live like this anymore. I’ve watched many videos on eagle syndrome and I truly feel a styloidectomy is what I need. So I hope someone can help me. The pain is bilateral, worse on my left side. Even with the medicine, I have symptom flare ups when I feel like I am going to die because I can’t breathe and the pain gets so bad. I am just losing hope. When I find a new doctor and gain hope, they always end up saying they can’t help me. Wondering if anyone else has eagle syndrome or can relate to my pain. I am looking for an ENT who can help me. Any advice would be helpful. Thank you.