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
@robertcort You have dysphagia and you are looking to connect with members with similar experiences. Members like @travelgirl @hoping @mindyf @vbammer @meliss @de9g @brooklyngirl @elimpert96 @alcorreia0123 @empy @christina61 have all been part of similar discusses and members @alpaca @wgatap21 @hopeful33250 may be an additional resource as well.
It sounds like you are not finding the care you need in your area and you are looking for a provider closer to where you live. I know that finances and insurance can be common barriers for receiving the care you need. May I ask what your barriers are regarding seeking care outside your vicinity?
I am in Tx too. Do you mind me asking who you sought help from, and they treatment they provided?
NO BARRIERS WITH INSURANCE...BUT I HAVE A BARRIER WITH NOT BEING ABLE TO SPEAK NORMALLY MAINLY BECAUSE OF THE OVER-LOAD OF SALIVA THAT IS NON-STOP TO CALL UP A DOCTOR WHO MAY DO THE SIALENDOSCOPY PROCEDURE... PLUS I DO NOT HAVE A CAR EVEN THOU I HAVE DRIVERS LICENSE BUT COULD NOT DRIVE ANYWAY BECAUSE I WOULD NOT BE ABLE TO WITH MY SALIVA PROBLEM KEEPING MY TWO HANDS ON THE STEERING WHEEL...ALSO I AM 83 YEARS OLD AND LIVE ALONE WITH MY FEW FRIENDS THAT LIVE CLOSE BY THAT HAVE CARS THAT COULD HELP ME ...TO HELP ME TO DRIVE ME TO ANY DOCTORS APPOINTMENT OR FOR SPEAKING FOR ME ALSO BUT THEY ARE OLD & SICKLY LIKE MYSELF SPECIALLY WITH THIS VIRUS EVERYONE ELSE IS BEING SAFE... YES I HAVE DYSPHAGIA BUT HOW MANY HAVE SUCH A SERVER SALIVA PROBLEM THAT OVER-TAKES ME WITH SALIVA POURING OUT OF MY MOUTH LIKE A WATER-FALL NOW FROM 2017 & NOW IN 2020 LIKE 2 WATER-FALLS ...I SAW ON GOOGLE THE INFORMATION THAT I COULD HAVE A STONE IN THE SALIVARY GLAND OR A INFECTION ? BUT IN ANY CASE I NEED TO HEAL THIS SALIVA SOMEWAY & ONLY KNOW THAT SIALENDOSCOPY IS MY ONLY HOPE INSTEAD OF REMOVING THE SALIVARY GLAND..YES I HAVE A INITIAL APPOINTMENT WITH A ENT DOCTOR DECEMBER 20 BUT BEFORE THIS WEEK THE DOCTOR MESSAGE ME THAT I REALLY DO NOT NEED A SIALENDOSCOPY WITHOUT SEEING ME FIRST,,& EVEN ASKED ME TO CALL HIS OFFICE TO TALK BUT I MESSAGE BACK THAT I WAS NOT ABLE TO SPEAK ...I AM THINKING THAT THE ENT DOCTOR AT THE UNIVERSITY HOSPITAL DOES NOT DO SIALENDOSCOPY ANYWAY..I KEEP SEARCHING....BUT WHERE? THIS IS MY LARGE BARRRIER REGARDING SEEKING SEEKING CARE....ONLY TIME IS ON MY SIDE BUT HOW LONG CAN I HOLD OUT IS THE QUESTION ? ROBERT CORTAZAL
I went to Dr. Burkey at Cleveland Clinic and he told me to live with also. He said surgery would be worse than what I’m living with.
Is Dr. Burlkey experienced in Eagles Surgeries? I can't imagine any head neck surgeon that had done numerous ES surgeries would say that. I had bilateral styloid removal to the skull base with the Davinci robot and did great.
-
Like -
Helpful -
Hug
1 Reaction@arj607 Welcome to Mayo Clinic Connect, a place to give and get support.
May I ask if you are looking for information regarding Eagle Syndrome because you have the diagnosis?
-
Like -
Helpful -
Hug
2 ReactionsYes I have Eagles Syndrome. I had bilateral styloid remove about a year ago with the Davinci Robot. I have some symptoms that all the specialist say has noting to do with Eagles but so many have the same symptoms. I have double and blurry vision that started around the time I started getting the wild headaches from the ES. Most of my symptoms nerve compression, my carrotid artery was being compressed and TMJ like symptoms are gone. I do still have the eye problems and the mump like feeling. Dr. Hackman my head neck surgeon has given me botox in my parotid gland that helps but it comes back. Just wanted to gather more insight. Thanks.
I have not had surgery for my Eagles and was ad used not to do surgery, because symptoms were intermittent. Dr Burkey at Cleveland clinic said surgery would be worse than living with condition. I. The meantime, getting worse. No Dr in Rochester NY has expertise on condition. Don’t know what to do.
@robertcort You are in need of support and relief. I'm wondering if you have considered attempting to get a social worker with the county or a local aging and disability office. I know that you said you have difficulty speaking. Would emailing these institutions be an option?
@eastmas1 Welcome back to Mayo Clinic Connect. You don't have a doctor near you and you don't know what to do.
May I ask if you have the means and mobility to be able to travel for medical care?
-
Like -
Helpful -
Hug
1 Reaction