Finally a Diagnosis

I am glad I found this site. It gave me a lot of good information. Over the last five years I have seen 2 ENT’s, a neurologist, dentist, family doctor, two ER docs and my endocrinologist. No one could figure out why I had terrible jaw/ear/throat pain. Three years ago I started with vertigo and have been dizzy almost constantly since then. I was told it would go away. Luckily, my throat started to click when I swallow. That latest development led me to Eagle’s.

Two weeks ago I went to a a 3rd ENT, who i have become friends with at church. I told him that I think I have ES and he looked at me funny. He said that would have certainly been caught by now. Anyway he said he would gladly look at my scans and also ordered new ones.

This week I went into his office and he told me I should be wearing the white lab coat that day because I was right! It would have been missed again because the radiologist didn’t mention anything about it so he called him to have him measure my Styloid because he suspected ES. The radiologist called back and said “yeah, he sure has it!”

My right side actually has grown down and fused with my neck. (I’m guessing about 6-7cm. and extremely calcified) During the physical examine my friend thinks he either broke it or detached it from my neck (the pain sent me through the roof). But it has given me some relief from my symptoms because everything can move around a little when I swallow.

Long story short - on 11/19 I am having surgery less than three weeks from the day I uttered the words “I think I have ES”. Don’t give up even if the medical profession gives up on you. Luckily, I acquired a friend who is an ENT at the right time in my life and he took me seriously.

I will post about how my surgery goes and when my pain and dizziness goes away. I can’t wait to feel normal again.

Sorry for the long post.

Ah Your so lucky!!!! Im currently struggling finding someone here...3 ENT, 2 Endocrinologist, surgeon, neurologist and over 20 physicians within the last 1 1/2. I have terrible jaw, ear and neck pain....severe actually!! My Ct / contrast scan says I have Eagles. I got rejected twice for an appointment too see a surgeon because I live too far away....and its in Canada where I live...So I have no idea where I'm going to go or where too look...especially when no one around here as heard of eagles let along performed the surgery....WHo are you seeing and where? Have they done lots of ES?? Ah I envy you!! Ur so lucky u found someone!!!! Good luck on surgery

I am in the Harrisburg area of Pennsylvania. The ENT who diagnosed me specializes in sinuses but is in a fairly large ENT group so Dr. Roger Levin will be doing the surgery. He is their neck specialist. He does a lot of neck surgeries and is highly regarded so I feel very comfortable with him doing it. I guess I am lucky to live in a capital city in the US.

Well done you, for not giving up, and for diagnosing yourself! That's not too long to wait! SaaMee is having surgery the same day as you, so you could compare post-op stories!

If you want to know what to expect, there's some good stories in past discussions-

Hope that all goes well, and let us know how you get on,

God Bless, Jules