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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de9g | @de9g | Mar 8, 2019
In reply to @hoping "What I learned is that an ENT is the one will conduct a styloidetomy. So sorry..." + (show)
@hoping

What I learned is that an ENT is the one will conduct a styloidetomy. So sorry to hear about the headaches, I’m sure that can be tormenting.

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Hmm, of the four I've been to two referred me to neurosurgery.

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alcorreia0123 | @alcorreia0123 | Mar 8, 2019
In reply to @de9g "For clarification, has your resting heart rate been high since ES or even before? Thanks. My..." + (show)
@de9g

For clarification, has your resting heart rate been high since ES or even before? Thanks. My rhetorical question is, why headaches? I understand ear ache/pain, jaw, neck, throat and tongue issues. I do not get why the headache is THE constant.

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I have always had a high resting heart rate as far as I know. Eagles syndrome is genetic in my family. My mother and sister both have it as well. I'm not entirely sure why I have the headaches. Neuro has attributed them to my ES. I'm assuming they are pressing on something. I'm still in the process of getting things figured out on my end.

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1 reply
alcorreia0123 | @alcorreia0123 | Mar 8, 2019
In reply to @de9g "For clarification, has your resting heart rate been high since ES or even before? Thanks. My..." + (show)
@de9g

For clarification, has your resting heart rate been high since ES or even before? Thanks. My rhetorical question is, why headaches? I understand ear ache/pain, jaw, neck, throat and tongue issues. I do not get why the headache is THE constant.

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Do you get the headaches too??

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de9g | @de9g | Mar 8, 2019

Yes, usually right side only. Longest headache at least six months.

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1 reply
de9g | @de9g | Mar 8, 2019
In reply to @alcorreia0123 "I have always had a high resting heart rate as far as I know. Eagles syndrome..." + (show)
@alcorreia0123

I have always had a high resting heart rate as far as I know. Eagles syndrome is genetic in my family. My mother and sister both have it as well. I'm not entirely sure why I have the headaches. Neuro has attributed them to my ES. I'm assuming they are pressing on something. I'm still in the process of getting things figured out on my end.

Jump to this post

So you knew of ES before getting symptoms. No one in my family ever mentioned any of these symptoms and I had never heard of it until September 2018. Is your family having better success with doctors?

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2 replies
alcorreia0123 | @alcorreia0123 | Mar 8, 2019
In reply to @de9g "So you knew of ES before getting symptoms. No one in my family ever mentioned any..." + (show)
@de9g

So you knew of ES before getting symptoms. No one in my family ever mentioned any of these symptoms and I had never heard of it until September 2018. Is your family having better success with doctors?

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No, I just recently found out about it from my mom. I think it's a fairly new diagnosis in the family. There's quite a few genetic issues that run in the family in general. I do know that my mom and my sisters styloids are not as long as mine and they are not as symptomatic as I am.

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alcorreia0123 | @alcorreia0123 | Mar 8, 2019
In reply to @de9g "So you knew of ES before getting symptoms. No one in my family ever mentioned any..." + (show)
@de9g

So you knew of ES before getting symptoms. No one in my family ever mentioned any of these symptoms and I had never heard of it until September 2018. Is your family having better success with doctors?

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I live in a different state than my mother and sister. They seem to have better luck there with doctors so I'm taking a trip up in April to see their neuro doctor since the doctors around where I am seem pretty clueless.

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alcorreia0123 | @alcorreia0123 | Mar 8, 2019
In reply to @de9g "Yes, usually right side only. Longest headache at least six months." + (show)
@de9g

Yes, usually right side only. Longest headache at least six months.

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I am so sorry. These headaches are the worst. I have them too. You are not alone. You are not crazy. I think the headaches are a more rare side effect of ES. Is the styloid on your right longer than your left?? Both of mine are long. So I think that's why my entire head gets affected..

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1 reply
de9g | @de9g | Mar 8, 2019
In reply to @alcorreia0123 "I am so sorry. These headaches are the worst. I have them too. You are not..." + (show)
@alcorreia0123

I am so sorry. These headaches are the worst. I have them too. You are not alone. You are not crazy. I think the headaches are a more rare side effect of ES. Is the styloid on your right longer than your left?? Both of mine are long. So I think that's why my entire head gets affected..

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Yes right styloid is longer and pain on right side mostly, but all molars hurt, both sides jaw pain and ringing in both ears.

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de9g | @de9g | Mar 10, 2019
In reply to @de9g "Has anyone had a CT scan show a mass lesion? What is that?" + (show)
@de9g

Has anyone had a CT scan show a mass lesion? What is that?

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Does anyone also have nosebleeds and/or bloody saliva? I do not, but wanted anyone having either of these to check out nasopharyngeal carcinoma. Almost as rare and very hard to find. Not trying to add to anyone's stress, but only condition I found very similar to ES in many aspects.

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