I am copying my Facebook posts here, because I received no response there.. They are in order and any glimmer of hope would be appreciated..
Ok I have had a sore throat ear ache (on the right side) for 7 months now, I have been to the VA several times, To my Doctor, and an ENT specialist, and neurologist. There are other symptoms that come and go such as headaches, and a sensitivity to light and sound. Also the right side of my throat is sore to the touch. The docs have tried several antibiotics, nose sprays, and Gerd Medicine. Nothing helps. 3 Weeks ago I was driving down the road, and blacked out momentarily. Luckily no accident! Spent a night and day in the hospital, Where they ran EEG's ECG's Echo grams , cat scans, and MRI's on both my chest and my head. They found absolutely nothing wrong, no reason I should black out, and nothing wrong with me. In the fitness of health. From what I have been reading (hours of searching the web) I am starting to think I might have this eagles syndrome. I have another appointment with the ENT tomorrow and was wondering if and how I should bring this up? He's convinced it's neurological, and the neurologist is convinced its not, I feel like a tennis ball going back and forth. Any comments would be appreciated.
So I saw the ENT at the VA (A PA), he told me that Diagnosing me was now beyond his ability. He told me that the Eagle syndrome I mentioned did not exist, he would not test for it, and that he was going to get VA permission for me to see an offsite specialist. Who knows how long this will take... sigh
So any recommendations for an ENT in the St. Petersburg, or Tampabay area? Someone that will test for Eagle Syndrome if necessary?
Well since no-one has responded to me in any of these forums, I guess I will just keep you all up to date. I finally have an appointment next Friday with Dr. Katherine Hall at USF in Tampa.. Hoping for an answer, will let you all know how it turns out..
It sure sounds like you could have Eagles. In order to diagnose it, you need a 3D CT scan, or a CT scan with contrast. Eagles won't show up on a regular CT scan from what I understand. Don't even go back to the doctor who doesn't believe Eagles exists. Obviously it does.
The best results come if you can go to somebody who has experience doing the Eagles surgery, if they do an external surgery, and if they take the whole thing out - NOT just a tip or a part of it. Emma has a great list of experienced doctors and if at all possible try to see one of them. I believe there is a doctor there at the Cleveland Clinic in Florida. Most of us have had to travel quite a ways to get treatment. It's best NOT to have surgery with someone who hasn't done it before.
Oh, I also wanted to add that a CT scan with contrast will show the styloids, but a number of us have had the experience where our styloids are actually longer than what is seen on the scan. So a 3D scan is better, but a CT scan with contrast is at least something that will show the styloids.
Also, when ordering the scan, tell them to look for the styloids.