Eagle's Syndrome

Posted by Jackie, Volunteer 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?

Liked by de9g

@de9g

I do not know which came first, but I sure wish there would be a new study on this and other causes of the ear/neck/headache issue. Thought I was inching forward and 3 doc visits this week show me I'm at step 1 again. More tests, more ruling things out while symptoms increase. Seems like 25 years of tests would have answered some questions by now. I heard there is an injection that would be fairly accurate on a yes or no answer for ES so why not give the shot and rule it out? Instead docs need another CT scan, another MRI to rule out Otosclerosis, ETD, atypical Meniere and probably hypochondria. Didn't log on because I thought I would have good news… wonk, wonk… Disappointing!
BTW, I had that spasm, but only one time so I didn't relate it to ES.

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

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@de9g

I do not know which came first, but I sure wish there would be a new study on this and other causes of the ear/neck/headache issue. Thought I was inching forward and 3 doc visits this week show me I'm at step 1 again. More tests, more ruling things out while symptoms increase. Seems like 25 years of tests would have answered some questions by now. I heard there is an injection that would be fairly accurate on a yes or no answer for ES so why not give the shot and rule it out? Instead docs need another CT scan, another MRI to rule out Otosclerosis, ETD, atypical Meniere and probably hypochondria. Didn't log on because I thought I would have good news… wonk, wonk… Disappointing!
BTW, I had that spasm, but only one time so I didn't relate it to ES.

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Sorry all for so many questions, but has anyone been told styloid surgery is not for a neurosurgeon, but a neck surgeon?. A neurosurgeon told me that today.
Does anyone have high resting heart rate? Mine has always been mid 70s now it's high 90s?
What's longest headache anyone has had? When I tell docs I have one headache that last months no one seems concerned. My PC has to give shot to "break" headache. OTC and prescribed do not work.

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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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@de9g

Sorry all for so many questions, but has anyone been told styloid surgery is not for a neurosurgeon, but a neck surgeon?. A neurosurgeon told me that today.
Does anyone have high resting heart rate? Mine has always been mid 70s now it's high 90s?
What's longest headache anyone has had? When I tell docs I have one headache that last months no one seems concerned. My PC has to give shot to "break" headache. OTC and prescribed do not work.

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I have had a headache that's lasted for up to 2 months. It broke for a few days with slightly less pain here and there but it stayed painful for that long. My resting heart rate has always been in the upper 90s sometimes low 100s.

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@alcorreia0123

I have had a headache that's lasted for up to 2 months. It broke for a few days with slightly less pain here and there but it stayed painful for that long. My resting heart rate has always been in the upper 90s sometimes low 100s.

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

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@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.

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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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@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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@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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@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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@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

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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