Eagle Syndrome

Posted by Jackie, Alumna Mentor @travelgirl, Apr 25, 2018

My son was diagnosed with Eagle Syndrome. It took years of him complaining to Dentists and Doctors before it was diagnosed. Finally a Dr referred him too the Cleveland Clinic. They were able to diagnose it, but didn't have a Dr on staff that could offer any advice. Being that Eagle syndrome is so rare less than 4% percent have this condition and of that 0.16% show symptoms.
We found a couple of Dr's who have treated the condition. But they claim the surgery is horrible they found it creates more issues. That to hold off as long as a person can.
It is very painful at times for my son. He said right now, he can feel the Styloid pressing on his Hyloid bone.
Does Mayo Clinic have any studies or Dr's that deal with Eagles Syndrome?

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

eastmas1 | @eastmas1 | Jan 15, 2022

Dr John Coniglio in Rochester ny will do my surgery. I’m sorry you have this. More to tell.

John, Volunteer Mentor | @johnbishop | Jan 15, 2022

In reply to @eastmas1 "Dr John Coniglio in Rochester ny will do my surgery. I’m sorry you have this. More..." + (show)

Hello @eastmas1, Thank you for your helpful response. You will notice that we removed your email address to protect your privacy since Connect is a public forum and anyone can see your email address. Members can share personal contact information easily using the private message function of Connect. See the Get Started on Connect guide for step by step instructions for how to send a private message and other tasks available when using Connect -- https://connect.mayoclinic.org/get-started-on-connect/

kariheppner | @kariheppner | Feb 13, 2022

In reply to @johnbishop "Hello @eastmas1, Thank you for your helpful response. You will notice that we removed your email..." + (show)

Hello, I was diagnosed with Eagle Syndrome about two years ago. My ENT was great that dignosed me, but was going into retirement so referred me to another, ENT who basically asked me what I was doing there as I didn't need surgery and dismissed me. I continued to doctor for throat/neck pain, headache and feeling like there was something lodged in my throat, no one else agreed with the diagnosis as they didn't understand it so blamed it on my scoliosis. Started PT in August for neck pain and was just dismissed with not much succes, but did give me temporary relief. At the end of December, I went to a different ENT for tonsil stones (coughed up one over a 1/2 inch in diameter) and throat pain. He just said it was probably nerves in my neck and if I wanted to get rid of the tonsil stones I'd have to have my tonsils out. He also cleaned the wax out of my ears and saw a cyst in my right ear which he ruptured. Since he ruptured the cyst, I have had severe pain in my right ear. I went back to him a week later and he said it looked good. A month later after having intermitten pain and now a lot of pain in my right ear, throat and side of my face, I saw my regular physical. He gave me antiinflamatory medicine and said it was my TMJ. The meds are not working so trying to figure out what to do. I had forgotten about my Eagle Syndrome diagnoisis since no one else acknowledged it, but now with this flair up feel that's the culprit of why I'm feeling this way. Would love to find a doctor who could help with this pain, as ear, throat, neck, face and head pain are difficult to deal with and do anything. Thanks for any help in this matter.

John, Volunteer Mentor | @johnbishop | Feb 13, 2022

In reply to @kariheppner "Hello, I was diagnosed with Eagle Syndrome about two years ago. My ENT was great that..." + (show)

Hi @kariheppner, Welcome to Connect. I'm really sorry to hear the ENT that diagnosed you with Eagle Syndrome retired and referred you to another ENT that wasn't helpful. I wasn't familiar with tonsil stones and found some information that may explain why the ENT said you might need to have your tonsils taken out and also has some suggestions to prevent the tonsil stones from forming

Tuesday Q and A: Self-care steps may help prevent tonsil stones from returning:
-- https://newsnetwork.mayoclinic.org/discussion/tuesday-q-and-a-self-care-steps-may-help-prevent-tonsil-stones-from-returning/

@eastmas1 @ddmarie @boofinley @marjana and others may have some suggestions for you also.

I can understand why you want to follow up with the Eagle Syndrome diagnosis and I would do the same thing. Have you considered seeking help at a major teaching hospital or health facility like Mayo Clinic?

kariheppner | @kariheppner | Feb 13, 2022

Yes, I would like to see a specialist who has dealt with both tonsil stones and eagle syndrome to find out what is the best option for me in dealing with these things. Do you know of an ENT who has experiences with these medical symptoms? Thanks so much for your help.

marjana | @marjana | Feb 13, 2022

In reply to @carolinedoubt "Anyone out there that knows anything about eagle syndrome surgery? I have been diagnosed and surgery..." + (show)

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.

marjana | @marjana | Feb 13, 2022

In reply to @carolinedoubt "Anyone out there that knows anything about eagle syndrome surgery? I have been diagnosed and surgery..." + (show)

Yes I did have surgery in 2021 and if you need more info *** please send me a private message.

John, Volunteer Mentor | @johnbishop | Feb 13, 2022

In reply to @marjana "Yes I did have surgery in 2021 and if you need more info *** please send..." + (show)

@marjana, We removed your personal email address from your messages above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.