Eagle Syndrome

Yes I did have surgery in Septembar of 2021 in Idaho state and surgery was like a dream,,before surgery life was living nightmare that can't even describe anyone that like to have more info please send me a private message - will give more info and have pictures after surgery.

@davidmth,thanks for sharing your symptoms. Please see my detailed note above.
I have found it difficult to describe my symptoms to my local EENT specialist. I got a strange feeling that she did not believe me or made me feel as if I was a hypochondriac.
I am a healthcare provider myself and found her reaction very disheartening.
In retrospect, I can understand the rare nature of this condition and the lack of frequent exposure to the symptoms involved.

Hi,
I have been trying to just find an ENT who will take my case and look not at me like I’m nuts. I also have been struggling with ES. My Ct shows I have bi- lateral styloid that are extending to the hyoid bone. Both are fractured and one is said to closely approximate the oral mucosa.
I have ear-pain that feels like a bad earache, sharp pain that leads to the mouth when talking. I get frequent headaches, also pain in the neck area that’s is under the ear, pain where the jaw leads into the neck ( it’s under the chin about an 1 down). At times I get this popping sound in my neck that seems like something gets caught. The left side of the face slightly swells on and off. I periodically get a pain in the bottom of the neck like a sharp poke. An maxillofacial surgery is who diagnosed the problem and felt that I need surgery. So I went to one ent and he showed his true colors and told me he doesn’t believe in the existence of eagle syndrome. So he would have a bias prognosis and could not judge not case accurately. The 2nd ent stated that I needed to go see and spine and neck doctor and that my symptoms don’t constitute an es issue. He looked at me and said well Most people hear noise when They turn their head. He said but it could be a bulging disk. It has been a very disappointing and discouraging year. I am now looking for an ent at musc in Charleston. Does anyone have suggestions? There has to be someone who really takes people to heart and try’s to help because they care. Not the patient feeling like your the lier or the weird one.

To everyone with Eagles Syndrome. Please get as many medical opinions as possible before you settle for that determination. If I had listened to the Radiologists after a CAT Scan (diagnosed Eagles Syndrome...NOT) and the three ENTs that did throat scans (said I needed tonsillectomy, had arthritis, needed mental help imagining the pain) I would be long dead. I did not listen and went for a fourth scoping--the same type scoping as the other three--and the Indiana University ENT found a throat tumor immediately. Hopefully, you do not have tumors, or cancer, but do not settle for that diagnosis. If anyone is interested, you can read about my journey in past comments. Best Wishes to you all.

Your case sounds similar to mine. I was lucky that after two years I was referred to Dr Thorpe at UNC as my neurologist thought I had a CSF Leak. I was already scheduled to go to the CSF leak center at Duke and did testing. Immediately Dr. Thorpe referred me to Dr. Trevor Hackman at UNC. After doing a laryngoscopy he knew immediately what was wrong with me. He went back and looked at all my CT scans and couldn't believe all the doctors at duke missed it. Anyway he is a head neck surgeon(this is what type doctor you need to do ES surgeries. He is the only doctor I found that is trained on the Davinici Robot. I had both my styloids removed as well as my right thyroid all at the same time.

I have sent many patients to him to do revisions etc. Not all patients are candidates for the robot. I am not sure why. I will say of all the doctors i've ever met etc he is the best I've ever met.

He is trained in so many areas. He sees a lot of cancer patients, reconstruction of cleft pallets and vascular.

There is an Eagles support group that has a list of doctors trained on the Davinci. The have a list of all doctors trained/experienced in Eagles Syndrome. Compared to the experiences I read about I had a much easier time. They do have to cut about five holes in your mouth but the mouth heels fast and easily. It is less invasive and less risky.

I read up on Dr. Hackman and he has all sorts of awards but the one I was most impressed with is the one where other doctors vote on who they would choose to do surgery on themselves. He has won it several times.
Maybe you could call the Mayo clinic and see if anyone is using the Davinci robot. It takes a whole team trained in this.

Best of Luck,

Adriene Huffman

If you have money the best ENT to do surgery is here in Idaho state he did mine and I do feel great it was right side and unfortunately I have to do left side to in December

Mine is calcified and not elongated. I would look for a otarlongist. My doctor is David Ludlow out of Metro in Cleveland Ohio.