Connect
Eagle Syndrome
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.
Connect
No, I have not had any orthodontic work.
-
Like -
Helpful -
Hug
1 ReactionI had an accident ran into a board hit between the eyes went to Urgent Care Dr took 2 ct scans one of my head and one of facial structure when he diagnoised me with Eagle Syndrome . I am currently under a nueroligist care in Augustai drive an hour to see her. At age of 58 it was discovered i have been habing TiAs i was told if i was 80 it would be normal thst was a punch in the gut. Now i find this may be partial of the cause i also have MHFT Genetic disorder my MRI has worsened from last year so i am having a repeat Lumbar Puncture i just dont kniw what to think anymore
-
Like -
Helpful -
Hug
1 Reaction@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
-
Like -
Helpful -
Hug
1 ReactionHello FaithandHope, I have had orthodontic work done when I was in my teens. I am now 55 yrs old and was just diagnosed with Eagle syndrome from a CT scan that I had done to look for a fracture in my skull. No fracture was found but then they found that I have calcified stylohyoid ligaments.
-
Like -
Helpful -
Hug
1 ReactionHello, @bitoberry, and welcome to Connect. If you click on VIEW & REPLY in your email notification, you will see the whole discussion best.
With this new diagnosis, I imagine you may have some questions and/or concerns. I'd like to introduce you to @travelgirl @hoping @rondam @jackiejean @fatihandhope @carolinedoubt @davidmth, who've all mentioned Eagle Syndrome in this discussion. I trust they will have some input for you about their experiences.
@bitoberry - what symptoms have you been experiencing?
-
Like -
Helpful -
Hug
2 ReactionsI've had the surgery done in March of 2017. I have no feeling in my chin/neck on both sides all the way down to the scars on my neck where they opened me up. It was a 5 hour surgery and I had 2 drains on the outside of my neck while being in the hospital for 48 hours. It was very difficult to swallow solid foods for a very long time and I still have difficulty with it at times. I often drink out of a straw because my swallowing mechanism doesn't seem to want to cooperate without that feeling in the area. About 4 months ago the pain in my left ear started coming back, at first a dull "earache", then the feeling of a match being lit deep in my ear and sometimes like someone taking a screw driver to my ear. I started experiencing the stroke like symptoms. I'm now waiting for the results of my CT to see if the part of the process that was left in is just slightly still "ticking" my carotid. This is certainly not a fun oddball disease to have to deal with and if anyone has questions about the surgey....I would be glad to help
-
Like -
Helpful -
Hug
2 ReactionsI have also been diagnosed with Eagle Syndrome and am scheduled for surgery January 4th. It took two years to get diagnosed. I am in pain constantly and feel like I have something stuck in my throat. The surgery is to take two hours with a good percent that it will relieve all my symptoms. Just not to thrilled with having my neck cut into. I have calcification in styloid not elongated.
-
Like -
Helpful -
Hug
1 ReactionWhy did they have a drain from your neck. My doctor is telling me my surgery will be outpatient.
-
Like -
Helpful -
Hug
1 ReactionI had to have both sides of my neck done due to calcification of the whole styloid on both sides. I was in the hospital for 72 hours. During the surgery I had 2 ENT doctors and a cardiovascular surgeon there because it was pressing on my carotid causing stroke like symptoms. They put drains on both sides of my neck while I was in the hospital to drain the blood and fluids out from my incision sites. It was quite the ordeal really. The pain and swelling after the surgery was pretty intense. What ended up being a 2 hour surgery turned into a 5 hour surgery. The main surgeon for the surgery had stated that they had never seen a case where the whole entire styloid was calcified
-
Like -
Helpful -
Hug
1 ReactionYour experience sounds horrible. I hope mine is not like that. I am at the point that my quality of life due to discomfort is affected. I have a nasal cyst that is being removed as well while I am under surgery. I will post back when I am done to share with others my experience with the surgery.
-
Like -
Helpful -
Hug
1 Reaction