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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 @sanderson7635 "The University of MN has options for you. I was referred to Dr. Hamar. I have..." + (show)
Profile picture for sanderson7635 @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)
Profile picture for ladylove1962 @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)
Profile picture for rosie68 @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)
Profile picture for vbammer @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)
Profile picture for thomason @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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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)
Profile picture for rebeccaismit @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)
Profile picture for mommyg33 @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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maxxdog | @maxxdog | Jan 8, 2024
In reply to @marjana "Yes I did have surgery in Septembar of 2021 in Idaho state and surgery was like..." + (show)
Profile picture for marjana @marjana

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.

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Hi, I was wondering what doctor performed the surgery for you in Idaho what hospital was it at? Thanks I also have been diagnosed with eagle syndrome but yet to find a doctor.

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sanderson7635 | @sanderson7635 | Jan 9, 2024
In reply to @maxxdog "Hi, I was wondering what doctor performed the surgery for you in Idaho what hospital was..." + (show)
Profile picture for maxxdog @maxxdog

Hi, I was wondering what doctor performed the surgery for you in Idaho what hospital was it at? Thanks I also have been diagnosed with eagle syndrome but yet to find a doctor.

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I have bilateral Eagles Syndrome. There are ENT doctors at the University of Minnesota Fairview clinic that treat this. I see Dr. Hamlar.

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