Atypical cranial pain on left side, affecting arm/neck/face. Pain in back of throat, pain behind eye, pain across cheek.
-Neurologist #1 said tolosa hunt syndrome.
-Neurologist #2 said Atypical trigeminal neuralgia
-ENT said Eagles Syndrome, but canceled surgery after scheduling it.
-Pain specialist says spinal damage at lower base skull.
I'm seeing a new pain specialist and he's been more interested in my neck. I had an MRI a week ago of the neck and he scheduled a 3d ct and xray where you have to be locked in various positions to further investigate the joints of the upper neck where they meet the skull.
There was some spinal damage, a hemingioma, and a few other things found that would potentially justify all the pain in my face, neck and arm...
I had a craniectomy and microvascular decompression almost a year ago for the trigeminal pain but it didn't work, but at least I got this cool scar:
The ENT said Eagles was causing the pain in the back of my throat, the neuro said atypical trigeminal neuralgia, the pain specialist says spinal damage, it's hard to get a straight answer but I'm at least moving forward ruling things out.
Currently I take 40mg of oxycontin, 125mg nortriptyline, and 120mg cymbalta for neuropathic pain on the left side of my face, neck and arm.
The pain specialist is also having me see a TMJ guy as you can hear my jaw pop from across the house, through walls.