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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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lostintranslation1 | @lostintranslation1 | Sep 1 5:54pm
In reply to @riverflow1 "FYI he is internationally sought after, so will have to wait I’m sure. Hope this helps...." + (show)
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FYI he is internationally sought after, so will have to wait I’m sure.
Hope this helps. I was diagnosed with Eagles Syndrome/ venous insufficiency
which isn’t true eagles syndrome but an enlarged styloid can impede the blood flow through the blood flow in brain. So my condition is most likely different from yours, I did a right jugular decompression surgery it he had shave off past of my styloid. So he would be able to do a styloidectomy as well
Sorry forgot to add that.

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@riverflow1 did you ever have the surgery done. They say I have the same thing and no one is wanting to do anything about it here in Minnesota . I’m a single mom with two kids and no family around. I’m scared of what’s going to happen if the damage continues to my carotid Artery and I’m worried about having the surgery at the same time. I don’t know what to think or how to feel about any of this.

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lostintranslation1 | @lostintranslation1 | Sep 1 6:08pm
In reply to @sanderson7635 "I have bilateral Eagles Syndrome. There are ENT doctors at the University of Minnesota Fairview clinic..." + (show)
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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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@sanderson7635 dr hamler has now retired any other drs you might know that treat this

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sanderson7635 | @sanderson7635 | Sep 2 3:50pm
In reply to @lostintranslation1 "@sanderson7635 dr hamler has now retired any other drs you might know that treat this" + (show)
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@sanderson7635 dr hamler has now retired any other drs you might know that treat this

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@lostintranslation1
I believe he mentioned one of his partners to me....
Samir Khariwala, MD

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lostintranslation1 | @lostintranslation1 | Sep 2 6:06pm
In reply to @sanderson7635 "@lostintranslation1 I believe he mentioned one of his partners to me.... Samir Khariwala, MD" + (show)
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@lostintranslation1
I believe he mentioned one of his partners to me....
Samir Khariwala, MD

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Thank you @sanderson7635

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fantasia866 | @fantasia866 | Nov 1 7:36pm
In reply to @linda21 "I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture..." + (show)
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I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture of perfect health’. Finally, last week, a new female ENT told me it MAY be Eagle’s Syndrome and I’m getting a CT scan on Monday.. I’m 99% sure I auto-diagnosed myself months ago but nobody would listen. Wishing you the best on your recovery!

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@linda21, I had to diagnose myself after 3 years of torture because the medical community gaslit me. My newly licensed physical therapist performed the Spurling test wrong and with such force she fractured my styloid process. I just googled my symptoms and there it was. There was no reason why any of the specialists that I saw couldn't have googled my symptoms. Our state university hospital agreed with my diagnosis. I was going to have exterior neck surgery, because I know how horrific interior throat surgery can be around all those sensitive nerves, but the female surgeon that had actually performed these surgeries moved out of state. That God I didn't have the surgery , I diagnosed my own blood clot correctly when everyone ignored the symptoms. This should be on every state board of medical imaging to look for. I believe every stats of people who have this condition is much higher, they are just not being properly diagnosed.

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kayekaye | @kayekaye | Nov 2 5:32pm
In reply to @lostintranslation1 "@riverflow1 did you ever have the surgery done. They say I have the same thing and..." + (show)
Profile picture for lostintranslation1 @lostintranslation1

@riverflow1 did you ever have the surgery done. They say I have the same thing and no one is wanting to do anything about it here in Minnesota . I’m a single mom with two kids and no family around. I’m scared of what’s going to happen if the damage continues to my carotid Artery and I’m worried about having the surgery at the same time. I don’t know what to think or how to feel about any of this.

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@lostintranslation1

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