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?

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

ladylove1962 | @ladylove1962 | May 15, 2021
In reply to @amandaa "@ladylove1962 Welcome to Mayo Clinic Connect. I am sorry to hear about your Eagle Syndrome diagnosis...." + (show)
@amandaa

@ladylove1962 Welcome to Mayo Clinic Connect. I am sorry to hear about your Eagle Syndrome diagnosis. It sounds as though your physicians are taking a safe approach for treatment.
Have they talked with you about the possibility of surgery for symptoms relief?

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Yes, he did mention two options one is more risky then, the other. My sister ( Debbie) her son had cancer and passed from Rhabdosarcoma so she had mentioned maybe to contact Mayo about my issue. I just want to make sure that it is nothing else before I have surgery. Looking for a second opinion as you could say.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 17, 2021
In reply to @ladylove1962 "Yes, he did mention two options one is more risky then, the other. My sister (..." + (show)
@ladylove1962

Yes, he did mention two options one is more risky then, the other. My sister ( Debbie) her son had cancer and passed from Rhabdosarcoma so she had mentioned maybe to contact Mayo about my issue. I just want to make sure that it is nothing else before I have surgery. Looking for a second opinion as you could say.

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@ladylove1962, here is the contact information to request an appointment for a second opinion at the Mayo Clinic location of your choice http://mayocl.in/1mtmR63
You can request an appointment yourself (self-refer) or ask your doctor to make the referral.

I'd also like to bring other members, like @travelgirl @john567 @nrd1 @stacybf @eastmas1 @christina61, so they can share their experiences certain foods getting stuck, second opinions and treatments for Eagle's Syndrome.

@ladylove1962 what 2 treatment options were suggested for you?

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1 reply
ladylove1962 | @ladylove1962 | May 18, 2021
In reply to @colleenyoung "@ladylove1962, here is the contact information to request an appointment for a second opinion at the..." + (show)
@colleenyoung

@ladylove1962, here is the contact information to request an appointment for a second opinion at the Mayo Clinic location of your choice http://mayocl.in/1mtmR63
You can request an appointment yourself (self-refer) or ask your doctor to make the referral.

I'd also like to bring other members, like @travelgirl @john567 @nrd1 @stacybf @eastmas1 @christina61, so they can share their experiences certain foods getting stuck, second opinions and treatments for Eagle's Syndrome.

@ladylove1962 what 2 treatment options were suggested for you?

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Dear Colleen, thank you for all the information on Eagle Syndrome. I didn’t realize how rare of a condition this is, so I think it is in my best interest to make an appointment with Mayo. I can deal with this for time being, some days are better than others.

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taml | @taml | Aug 17, 2021
In reply to @abbyco "Hello! I was diagnosed with ES after a 9 year hunt that lead me to more..." + (show)
@abbyco

Hello! I was diagnosed with ES after a 9 year hunt that lead me to more specialists than I can count. I’m reading through these posts and it seems that most people have not pursued surgery. I just wanted to offer that I had a styloidectomy in Aug 2020 and would be happy to answer questions for anyone who is looking for information. Please note that I had the vascular form of ES, meaning my jugular was impinged. My main symptom was intercranial hypertension which is different than the more typical form of ES and it’s symptoms (however it’s the same surgery regardless of impingement). I also struggled with neurological issues, face numbness, vision changes, dizziness, neck pain, daily headaches, migraines, etc. I’m here if anyone has questions!

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Hi. Just found out I have ES. after 50 yrs of TMJ diagnosis. Just joined Mayo connect and totally confused. Why is there no information about Mayo doctors and ES. Haven't seen any mention of Mayo docs for neck pain, ear pain and vision problems due to ES. or Mayo doctors for anything. Really confusing what Mayo has to do with this site. Sorry. Also most ES info is from 2018..... confused. Thank you.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 17, 2021
In reply to @taml "Hi. Just found out I have ES. after 50 yrs of TMJ diagnosis. Just joined Mayo..." + (show)
@taml

Hi. Just found out I have ES. after 50 yrs of TMJ diagnosis. Just joined Mayo connect and totally confused. Why is there no information about Mayo doctors and ES. Haven't seen any mention of Mayo docs for neck pain, ear pain and vision problems due to ES. or Mayo doctors for anything. Really confusing what Mayo has to do with this site. Sorry. Also most ES info is from 2018..... confused. Thank you.

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Hello @taml, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @travelgirl shared a post earlier in this discussion to a support website that you may find helpful for resources - https://livingwitheagle.org/t/4-10-15-updated-doctor-lists/774/41/ The support site lists discussions as late as Aug 2021.

I know it's frustrating not being able to find current information. Another source that you might find helpful is Google Scholar (https://scholar.google.com/) as it allows you to filter results by year so that you can find the latest medical research information. Here is a search done using "Eagle Syndrome treatment" sorted for 2021 -- https://scholar.google.com/scholar?as_ylo=2021&q=eagle+syndrome+treatment&hl=en&as_sdt=0,24

May I ask what confuses you the most?

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eastmas1 | @eastmas1 | Aug 18, 2021

I have Eagles too. The most confusing thing is lack of knowledge in medical community and no general consensus among Doctors of symptoms, treatments and surgery.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 18, 2021
In reply to @eastmas1 "I have Eagles too. The most confusing thing is lack of knowledge in medical community and..." + (show)
@eastmas1

I have Eagles too. The most confusing thing is lack of knowledge in medical community and no general consensus among Doctors of symptoms, treatments and surgery.

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@eastmas1, Have you seen the Living with Eagle Patients Support Community website? You might find it helpful to learn more about Eagles Syndrome - https://livingwitheagle.org/

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eastmas1 | @eastmas1 | Aug 18, 2021

I am connected with these people. It’s my only support as Doctors in Rochester New York have little knowledge or none.

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1 reply
lynniecat | @lynniecat | Aug 20, 2021

I am wondering if I have this, Started a year ago - woke up at 5 is, with debilitating pain in the back of my throat, under jaw, neck and face (cheek area shooting to ear, Could not move - lasted 10 minutes then slowly faded. I have had 15 attacks, Docs are doing a variety of test. It’s the strangest thing,

If I catch it at the start and slowly drink water with consistent swallows - maybe 10 to 20 swallows - then I usually can get the neck and throat pain to fade. It will come back but I use the trick again. If it starts up in the night - I just have to suffer though. The attacks last 2 minutes to 2 hours.
I’m curious to hear of if it sounds like GN

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 24, 2021
In reply to @lynniecat "I am wondering if I have this, Started a year ago - woke up at 5..." + (show)
@lynniecat

I am wondering if I have this, Started a year ago - woke up at 5 is, with debilitating pain in the back of my throat, under jaw, neck and face (cheek area shooting to ear, Could not move - lasted 10 minutes then slowly faded. I have had 15 attacks, Docs are doing a variety of test. It’s the strangest thing,

If I catch it at the start and slowly drink water with consistent swallows - maybe 10 to 20 swallows - then I usually can get the neck and throat pain to fade. It will come back but I use the trick again. If it starts up in the night - I just have to suffer though. The attacks last 2 minutes to 2 hours.
I’m curious to hear of if it sounds like GN

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Hi Lynn, I'm bringing your post to the attention of @eastmas1 @stacybf @ladylove1962, who have been diagnosed with Eagles syndrome.

Naturally, we can't give a diagnosis. You can read more about this condition here: https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome

Have you brought up Eagles syndrome in your discussion with your doctors?

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