Does anyone have a guide for newbies? That has symptoms, what to do to help with the pain, what type of dr to see, what type of tests to get, treatments, and recovery times?
It seems we all ask a lot of the same questions it would be nice if we could put together a guide with the group's combined knowledge to give to new members that join.
Hi Auree, If you look through the past discussions, you will find a treasure of information and answers to some of your questions. Each individual person is different - symptoms may vary; pain will vary; treatment will vary with each person; the gold standard for ES diagnosis is a 3D Cat Scan with and without contrast; also recovery times and results are mixed with each patient. I am still in a seven week recovery phase from intra-oral styloid surgery and still have some bad symptoms to deal with. Surgeons who deal with ES patients have a basic symptom and diagnosis guide to go by. Some of us experience symptoms that don't fit into the "normal symptom guide". A guide could be put together, but the variations would be great.
I've been thinking of putting together a website on eagle syndrome when I have totally recovered. It would be nice to kind of organize information in a neat template and make it a little easier to find.
Like viperbone said, there is a ton of variation from person to person. Even tips for treatment or pain relief vary. For example, caffeine and sugar seemed comforting to me, while they were damaging for most people with eagle syndrome. Popsicles were my saving grace, but others had to avoid them because of the sugar or NutraSweet. Also, some of us have symptoms that are nothing like the general description the doctors have. In my case, that meant very convincing "heart attacks" that sent me to the ER at least four times.
Anyway, I'd recommend you google this site with key words for your questions. I've been on this site for at least a year, and I know there has been a ton of great content.
Best wishes!