1. < Ear, Nose & Throat (ENT)

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?

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timber128 | @timber128 | Nov 24, 2022
In reply to @lacy2 "Sorry to hear this... although five years ago, am wondering who diagnosed your Eagle Syndrome and..." + (show)
@lacy2

Sorry to hear this... although five years ago, am wondering who diagnosed your Eagle Syndrome and if that person/dr has some suggestins for you?

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It was my local ENT Dr who has retired in the past few months.
My family Dr asked the ENT practice what they have done previously & they referred them to Mayo, which is what we did.
I don’t know what has changed since but they are not willing to help in Rochester 😡

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sanderson7635 | @sanderson7635 | Nov 24, 2022
In reply to @timber128 "I had Eagle Syndrome diagnosed in 2017 and it has become chronic now. My Family Dr..." + (show)
@timber128

I had Eagle Syndrome diagnosed in 2017 and it has become chronic now.
My Family Dr sent a referral to Mayo & after being sent to ENT, then Gastro then Neurology & back to ENT they finally after a month declared they don’t have anyone to help & can’t give me an appt!!! I am frustrated, furious & in pain with NO-ONE to help me!
I have jaw/ear pain, tinnitus, headaches, feeling of something stuck in throat. Gag if I suck through a straw or use a q-tip in my ear. My hearing is bad due to tinnitus.
Tried steroids & shots, Botox, lidocaine, pain meds, but it’s getting worse.
I am at my wits end as I thought Mayo Rochester would at least be able to help or point me in the right direction. But they have failed on both counts.

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The University of MN has options for you. I was referred to Dr. Hamar. I have an appt with him next month for the same symptoms. I was diagnosed with ES a few weeks ago.

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1 reply
timber128 | @timber128 | Nov 24, 2022
In reply to @sanderson7635 "The University of MN has options for you. I was referred to Dr. Hamar. I have..." + (show)
@sanderson7635

The University of MN has options for you. I was referred to Dr. Hamar. I have an appt with him next month for the same symptoms. I was diagnosed with ES a few weeks ago.

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That’s good to know & close to us as we are in Iowa. I will seek out his info!
Thanks 😍

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eaglessoar857 | @eaglessoar857 | Jan 9, 2023
In reply to @ladylove1962 "Good Afternoon Everyone, I came across something that has helped me, which is incredible! Believe it..." + (show)
@ladylove1962

Good Afternoon Everyone,
I came across something that has helped me, which is incredible! Believe it or not it is VITAL PROTEINS ORIGINAL COLLAGEN PEPTIDES. I started drinking this over a month ago. I try to stay away from bread and sugar which my make it worse. Just give it a try!! It works for me!! I am afraid of surgery so, I just have to live with this.
Prayers for a for everyone living with this!! People dont understand and think you are full of it!! Well, guess what!! I have proof this thing is real!!! .. BEST OF LUCK!! CINDY

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It’s funny that I came across this, because I recently found out what Eagles syndrome was and strongly believe I have it. I have been back and forth on why I might’ve developed it. Can’t rmb any trauma or injury in the past and realized the eagles symptoms started 2 months after I started taking vital proteins collagen powder daily. So I was wondering if the collagen powder had anything to do with the Calcification..

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henry55 | @henry55 | Feb 3, 2023
In reply to @rosie68 "Yes I was diagnosed in 2015. I’m stable and will have to have surgery some time...." + (show)
@rosie68

Yes I was diagnosed in 2015. I’m stable and will have to have surgery some time. My symptoms are getting worse and it’s no fun. I hate it. I’ve learned to not do caffeine and I have to rest a lot. I take turmeric and ibuprofen at times and do Epson baths.

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You say your stable now, is it because your taking medications? If so did the medication help? Will you end up having surgery?

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henry55 | @henry55 | Feb 7, 2023

I'm sorry to hear about your son and my prayers go out to him. My wife is also dealing with Eagle Syndrome and we are just now beginning to find medical help.

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lilwolf | @lilwolf | Apr 25, 2023
In reply to @vbammer "Mine is calcified and not elongated. I would look for a otarlongist. My doctor is David..." + (show)
@vbammer

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

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I know this is a old post but was wondering how you had liked Dr Ludlow.I am seeing him next month for ES (had alot of problems with ears,neck back of jaw etc) for along time but was sent back to dentist n he found it (ES)

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rebeccaismit | @rebeccaismit | Jul 20, 2023
In reply to @thomason "After suffering for one year with ear and throat pain, I went to several different doctors,..." + (show)
@thomason

After suffering for one year with ear and throat pain, I went to several different doctors, having throat-scoping's, exams and x-rays. Doctors concluded I had everything from allergies to Tonsillitis. Disturbingly, my tonsils had long since atrophied away due to age. Once, while in agonizing pain, I went to the Emergency Room (ER) and requested a CT scan. The ER doctor stated, "I guarantee you it would be a waste of money, since you don't have cancer." Finally, yet another doctor finally prescribed a CT scan. After reading the scan, doctors said it must be Eagles Syndrome since my Styloid bones were slightly elongated. The way the pain was increasing. I did not believe this conclusion. Finally, yet another ENT did another scope (just like the others had done) and immediately saw a white patch in my throat. After a biopsy, it was determined to be cancer of the Pyriform Sinus. These are located near the vocal cords in the throat. I will never understand how the radiologists that read the CT scan did not see the tumor, because when the doctor showed me the CT image on his screen it was very obvious. All this to say, do not give up with a few opinions. Go to a University Specialist and get yet another opinion. If I had listened to the radiologists, I would be waiting around with a growing cancer. As it is, by the grace of God, I am alive.

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Omg that is awful. I'm in horrific tmj pain every day bout to have surgery and think I have Ernest or eagles. I'm going to see a ent and neurologist if surgery doesn't work.

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1 reply
thomason | @thomason | Jul 20, 2023
In reply to @rebeccaismit "Omg that is awful. I'm in horrific tmj pain every day bout to have surgery and..." + (show)
@rebeccaismit

Omg that is awful. I'm in horrific tmj pain every day bout to have surgery and think I have Ernest or eagles. I'm going to see a ent and neurologist if surgery doesn't work.

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@rebeccaismit, best wishes to you for a successful surgery and no more pain.
Please let us all know the outcome. Hugs.

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planetjanet | @planetjanet | Aug 21, 2023
In reply to @mommyg33 "I am new to this group and found out a few weeks ago I have eagles..." + (show)
@mommyg33

I am new to this group and found out a few weeks ago I have eagles syndrome. I went to my chiropractor and got adjustments to my neck. The pain has gotten better. I am able to swallow with a lot less pain and moving my neck around doesn’t cause pain in my throat or ear. So for those of you not able to find a doctor to help, I suggest seeing a chiropractor. Best wishes to everyone who aren’t able to find a doctor that will help.

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Thank you for this. I have all the symptoms of Eagles syndrome and yet my old ENT doesn't see it on the CT. So right now I am at square one still. Every symtom I have read is EXACTLY the pain I feel and it is getting worse. I am definately going to try the Chriropractor to see if I can get some relief.

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