Hi!
We’ve had members with gastritis and other digestive issues; these can be caused by irritation of the vagus nerve. I’ve not heard of any members having the tests you mention that I can think of, so not sure if it’s worth you doing these before surgery. Some have had their gag reflex cause issues too because of nerve involvement.
Oral nerve pain meds can help, like Amitriptyline, Gabapentin, Lyrica, Carbamazepine. It can take a while before they work though, and can be trial and error to find one which does. The lidocaine and steroid injections are often done into the tonsillar area guided by ultrasound, and again , they have helped some members, but not always. They’re only a temporary solution though as they can’t be done too often. I don’t know about pulse treatments or the Morrison clinic I’m afraid.
There is a FIESTA MRI which can show how nerves are affected, but it doesn’t seem to be widely available. Usually it’s a matter of having the surgery & seeing what improves! My understanding of MVD is that it’s done when a blood vessel is compressing a nerve, and the surgery is done by putting a mesh in between them. If styloids are causing the irritation then removing them is the permanent solution. The transcervical approach is generally accepted as the best way to remove the styloids (external surgery). Here’s a link to our info page about surgery:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hearing cracks can be calcified ligaments, although people with cervical cranial instability get cracks too, and TMJD can cause that in the jaw area…
Pain in the roof of the mouth isn’t one of the more common ES symptoms but could be from the GP nerve.
I’ll post a link to the Doctors List; all the doctors on there have done at least one successful surgery to have been included, but you’re right that Drs Cognetti, Samji and Annino are experienced. There are others though; Dr Hepworth in CO, Dr Hackman in NC…As far as I’m aware we’ve not had anyone have surgery with Dr Samer Al-Khudari; in the surgery info section I linked there is info in there about questions to ask your doctor. I think one of our members mentioned a site that you can look up doctors on which lists their experience but I can’t remember it I’m afraid!
Here’s the link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I don’t know about surgery costs, it does vary, hopefully others can help you with that one, as we’ve had some Canadian members who’ve travelled for surgery.
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