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.

fayzaibrahim | @fayzaibrahim | Feb 21, 2022

In reply to @fayzaibrahim "I went 3 Orthodontic" + (show)

And I’m from Sugar land TX also

fayzaibrahim | @fayzaibrahim | Feb 21, 2022

In reply to @marjana "Yes I'm the one that had surgery in 2021 and if need more info here let..." + (show)

Did you do it in Houston? And if yes can you send me the doctors name pleas

John, Volunteer Mentor | @johnbishop | Feb 21, 2022

In reply to @fayzaibrahim "Did you do it in Houston? And if yes can you send me the doctors name..." + (show)

Hello @fayzaibrahim, Welcome to Connect. I see that you have asked both @marjana and @fatihandhope for their doctor's name. Hopefully @marjana can share her doctor's name and location information. I don't think that @fatihandhope is currently following Connect since they have only posted the one time which in unfortunate since you live in the same location.

This link was shared earlier in the discussion and may be helpful for finding more information on Eagle Syndrome:
https://livingwitheagle.org/

Have you been diagnosed with Eagle Syndrome?

fatihandhope | @fatihandhope | Feb 21, 2022

In reply to @johnbishop "Hello @fayzaibrahim, Welcome to Connect. I see that you have asked both @marjana and @fatihandhope for..." + (show)

Thx for the email notification John. Yes, I have not recently followed the post since two other doctors believe I was incorrectly diagnosed with Eagles Syndrome ( although I continue to feel I am being slowly strangled to death). My condition has worsened and I have now been diagnosed with obstructive sleep apnea, severe airway and nasal collapse. All of my problems begin when my dentist recommended invisalign. I'm sorry I do not have a referral for @fayzaibrahim . If you do hear of names in the Houston area, please let me know so I can get another opinion. The doctor I saw in UT Southwestern in Dallas was Dr. Teresa Chan Leveno. She ordered a CT scan of my neck and a barium swallow. She may or may not be a good doctor, but she showed no compassion and had a horrible bedside manner. I pray we all get some relief.

fayzaibrahim | @fayzaibrahim | Feb 22, 2022

In reply to @fatihandhope "Thx for the email notification John. Yes, I have not recently followed the post since two..." + (show)

Thank you so much

rosie68 | @rosie68 | Feb 28, 2022

In reply to @carolinedoubt "Anyone out there that knows anything about eagle syndrome surgery? I have been diagnosed and surgery..." + (show)

Yes I was diagnosed in 2015. I’m stable and will have to have surgery some time. My symptoms are getting worse and it’s no fun. I hate it. I’ve learned to not do caffeine and I have to rest a lot. I take turmeric and ibuprofen at times and do Epson baths.

hdeshazer | @hdeshazer | Apr 13, 2022

In reply to @fatihandhope "Thx for the email notification John. Yes, I have not recently followed the post since two..." + (show)

Did you find a doctor in Houston? I am looking for a doctor in the area as well

wuebbenjohn | @wuebbenjohn | May 12, 2022

I was in contact with Mayo yesterday and they told me they have no doctors who deal with Eagle Syndrome

karencecilia | @karencecilia | May 24, 2022

I have had facial pain for a long time. I have been wearing a hard plastic splint for "TMJ" for 30 years. With excessive stress I felt like I needed to have a new split. I found my face was hurting, my ear ringing loud (right sided) . I had a tooth injury from biting wrong. I went to my dentist to ask to have a new splint made, he was really concerned with the degree of pain in my jaw and ended up referring my pano x-ray to an Oral Surgeon who identified Eagle Syndrome, my dentist then forwarded them without suggestion to another Oral Surgeon who also immediately identified Eagle Syndrome. My PCP has never heard of Eagle Syndrome. The diagnosis is helpful, it answer a lot of the oddities that I attributed to stress. I have dizziness, ear pain, often feel like something is sticking in my throat. I have a tendency to get hiccoughs when I have the sensation of something in my throat (which is embarrassing). I feel like there is a scary road ahead. The images and stories.... As a mother of 5, I am a bit scared, a bit of anxiety about the unknown. I am hopeful that my care will fall into capable hands.

chefcole | @chefcole | May 25, 2022

In reply to @karencecilia "I have had facial pain for a long time. I have been wearing a hard plastic..." + (show)

I have just found out today I have eagle syndrome as well. TMJ dr, dentists, and finally after 5 years have my answers for all the pain and discomfort. I am a bit scared and worried that I would have to live with this till I can afford surgery without insurance.