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Eagle Syndrome

Ear, Nose & Throat (ENT) | Last Active: 6 days ago | Replies (307)

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@travelgirl

@hoping @rondam @jackiejean So sorry you are all going through this. It is very rare to have eagles syndrome. So few people have this disease. I posted above a list of Dr's who treat eagles syndrome. If I can offer any advice. Please make sure whoever you deal is a TOP SPECALIST in the dealing with Eagles Syndrome.
Here is another site I found with advice, tips and lists of Dr's people have used to treat eagles syndrome.

This site Living with Eagle's Syndrome lists some Dr's that have treated patients. I told my son we would need to see them all on the list to figure out which one we could trust. Case the two we met both said to make the surgery the last resort for treatment.

This Dr list is 3 years old on this site.
https://www.livingwitheagle.org/t/4-10-15-updated-doctor-lists/774/41
I wish you all the best.
Jackie

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Replies to "@hoping @rondam @jackiejean So sorry you are all going through this. It is very rare to..."

It took more than a couple of ENT's for diagnosis with me. A panoramic ct scan (you sit in a chair and the device rotates around your head) was the only way the tech or doctor could see what the F I was talking about! Im 55 years old. It has been over 20 years since then. I want surgery but cant find someone that "wants" to do it. Meaning one surgeon at a fairly prominent hospital (Loyola University) was wiling but stated it in such a manner as to not give me confidence. There are a lot of vital nerves and blood vessels in there. That being said, as I understand it a surgeon can go in externally or inter orally (through the mouth, into the throat). This last method has a poor surgical field but sounds safer to navigate around the vital stuff. Either way Im ready after all these years. It messes with my sleep. Maybe it is the angle of my neck on my pillows but I wake up all the time with pain in that region. Pushing on the one gland in my neck, the one that swells when you are sick, creates pain and pushes up so it crackles in my ear. I did recently watch a you tube video on the surgery so some one ifs doing it. I'd like to find a surgeon in my area near Chicago. It seems to be getting worse. Maybe the calcification is growing. I have read of some doctor papers( I forget the terminology), pre and post, that did have patients that had symptoms eliminated most but not all. Im ready.