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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Moderator
Colleen Young, Connect Director | @colleenyoung | May 27, 2022
In reply to @karencecilia "I have had facial pain for a long time. I have been wearing a hard plastic..." + (show)
@karencecilia

I have had facial pain for a long time. I have been wearing a hard plastic splint for "TMJ" for 30 years. With excessive stress I felt like I needed to have a new split. I found my face was hurting, my ear ringing loud (right sided) . I had a tooth injury from biting wrong. I went to my dentist to ask to have a new splint made, he was really concerned with the degree of pain in my jaw and ended up referring my pano x-ray to an Oral Surgeon who identified Eagle Syndrome, my dentist then forwarded them without suggestion to another Oral Surgeon who also immediately identified Eagle Syndrome. My PCP has never heard of Eagle Syndrome. The diagnosis is helpful, it answer a lot of the oddities that I attributed to stress. I have dizziness, ear pain, often feel like something is sticking in my throat. I have a tendency to get hiccoughs when I have the sensation of something in my throat (which is embarrassing). I feel like there is a scary road ahead. The images and stories.... As a mother of 5, I am a bit scared, a bit of anxiety about the unknown. I am hopeful that my care will fall into capable hands.

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Welcome @karencecilia and @chefcole. Being newly diagnosed with Eagle syndrome can be scary. But you're not alone. Here you'll meet many members, like @hoping @hdeshazer @rondam @bitoberry @mindyf @vbammer @pam71 @brooklyngirl @meliss @de9g @elimpert96 @jchristophersen @alcorreia0123 @empy @abby4paige @theeaglehasland @keetee @jenlink @fayzaibrahim @rosie68 @christina61 @stacybf @ladylove1962 @kariheppner @marjana @rosie68 and more who have shared their experiences in this related discussion:
- Eagle Syndrome https://connect.mayoclinic.org/discussion/eagles-syndrome/

What, if any, treatment or management approaches have been suggested for you?

REPLY
ladylove1962 | @ladylove1962 | May 27, 2022

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

REPLY
3 replies
ladylove1962 | @ladylove1962 | May 27, 2022
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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I HAVE EAGLE SYNDROME !

REPLY
abby4paige | @abby4paige | May 27, 2022
In reply to @wuebbenjohn "I was in contact with Mayo yesterday and they told me they have no doctors who..." + (show)
@wuebbenjohn

I was in contact with Mayo yesterday and they told me they have no doctors who deal with Eagle Syndrome

Jump to this post

My surgeon was at the University of Minnesota.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 27, 2022
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

Jump to this post

Hi Cindy,
I hadn't heard of collagen peptides, but found this article from the Cleveland Clinic
- Everything You Should Know About Collagen Peptides https://health.clevelandclinic.org/what-do-collagen-peptides-do/

Registered dietitian, Beth Czerwony, states "At worst, they may not work — but there’s no real risk. “More research is needed on the overall benefits of collagen peptides, but it’s well-documented that they won’t harm you, in proper doses,” she says. “So if you feel like you’re benefitting from them, go for it.”

Studies show that you can safely take 2.5 to 15 grams of collagen peptides per day. Be sure to read the label on your collagen peptides to determine how much you’re getting per scoop."

Cindy, how has this helped you with managing Eagle syndrome?

REPLY
ladylove1962 | @ladylove1962 | May 28, 2022
In reply to @karencecilia "I have had facial pain for a long time. I have been wearing a hard plastic..." + (show)
@karencecilia

I have had facial pain for a long time. I have been wearing a hard plastic splint for "TMJ" for 30 years. With excessive stress I felt like I needed to have a new split. I found my face was hurting, my ear ringing loud (right sided) . I had a tooth injury from biting wrong. I went to my dentist to ask to have a new splint made, he was really concerned with the degree of pain in my jaw and ended up referring my pano x-ray to an Oral Surgeon who identified Eagle Syndrome, my dentist then forwarded them without suggestion to another Oral Surgeon who also immediately identified Eagle Syndrome. My PCP has never heard of Eagle Syndrome. The diagnosis is helpful, it answer a lot of the oddities that I attributed to stress. I have dizziness, ear pain, often feel like something is sticking in my throat. I have a tendency to get hiccoughs when I have the sensation of something in my throat (which is embarrassing). I feel like there is a scary road ahead. The images and stories.... As a mother of 5, I am a bit scared, a bit of anxiety about the unknown. I am hopeful that my care will fall into capable hands.

Jump to this post

Hello Colleen,

I found a doctor that would do surgery but, he explained it is painful or could potentially be dangerous. So I opted out of surgery. I live in Henderson, Nevada and he is a specialist. Either, I do surgery or live with this dreaded problem everyday. I think TMJ is also involved with this. I went to an allergist thinking it was my sinuses and he said I had an infection in my teeth. I am a dental assistant so, I knew it wasn’t that. Ibuprofen does help but, cant rely on that everyday. Take care Colleen!! Keep me in the loop!! Cindy

REPLY
emptynose | @emptynose | May 29, 2022
In reply to @christina61 "Is Dr. Burlkey experienced in Eagles Surgeries? I can't imagine any head neck surgeon that had..." + (show)
@christina61

Is Dr. Burlkey experienced in Eagles Surgeries? I can't imagine any head neck surgeon that had done numerous ES surgeries would say that. I had bilateral styloid removal to the skull base with the Davinci robot and did great.

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Please recommend where to go. I'm terrified and cannot handle the pain

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cjohansen | @cjohansen | Jul 16, 2022

Has anyone had a case, or know of one, of Eagle Syndrome bone or calcified ligament pushing the hyoid bone out of place, actually vertical instead of horizontal. It's also affected my thyroid cartilage is affected and they are intruding on my larynx. The intrusion or lump is in my trachea area, covering half of my vocal cords and it has made my airway smaller, and it's difficult to swallow. I have seen a specialist but was hoping for more answers or to hear of another case like mine
Thanks

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 17, 2022
In reply to @cjohansen "Has anyone had a case, or know of one, of Eagle Syndrome bone or calcified ligament..." + (show)
@cjohansen

Has anyone had a case, or know of one, of Eagle Syndrome bone or calcified ligament pushing the hyoid bone out of place, actually vertical instead of horizontal. It's also affected my thyroid cartilage is affected and they are intruding on my larynx. The intrusion or lump is in my trachea area, covering half of my vocal cords and it has made my airway smaller, and it's difficult to swallow. I have seen a specialist but was hoping for more answers or to hear of another case like mine
Thanks

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Hello @cjohansen and welcome to Mayo Connect. I'm glad that you found our online patient network. You may wish to join Connect members talking about Eagle's Syndrome here:

– Eagle's Syndrome https://connect.mayoclinic.org/discussion/eagles-syndrome/

How long ago was this problem diagnosed? As you say, this problem is affecting your vocal cords, I'm wondering if you have both speech and swallowing problems?

REPLY
1 reply
Amanda Burnett | @amandaa | Jul 17, 2022
In reply to @cjohansen "Has anyone had a case, or know of one, of Eagle Syndrome bone or calcified ligament..." + (show)
@cjohansen

Has anyone had a case, or know of one, of Eagle Syndrome bone or calcified ligament pushing the hyoid bone out of place, actually vertical instead of horizontal. It's also affected my thyroid cartilage is affected and they are intruding on my larynx. The intrusion or lump is in my trachea area, covering half of my vocal cords and it has made my airway smaller, and it's difficult to swallow. I have seen a specialist but was hoping for more answers or to hear of another case like mine
Thanks

Jump to this post

Hi @cjohansen, I second Teresa's welcome and just wanted to make you aware that I did move your post to a discussion about Eagles Syndrome so that you could connect with other people going through similar situations.
I am sorry to hear that you are having so much trouble swallowing. I would be interested to know your answers to Teresa's questions as well.

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