New pain specialist

General
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Short recap:

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.

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Question do you have Eagles meaning was it diagnoised through a 3d ct cat scan?

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The ENT scheduled surgery after injecting lidocaine in the back of my throat and the pain went away. He also did a CT, but the styloid was just under the 3cm threshold.

At first he said the styloid was long on both sides after looking at the CT, but then canceled surgey a week after scheduling it...

I have a pain pushing on the back of my throat on the left side, when I swallow it feels like the left side of the throat doesn't contract right....

When he canceled surgery he told me to go back to the neuro surgeon that did my craniectomy for pain related to the face..

Deleone said:

Question do you have Eagles meaning was it diagnoised through a 3d ct cat scan?

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You can have TMJ and Eagles, I did/ do.

After a bite guard, better, after Eagles surgery, much better, then needed a bite guard adjustment. My head and face are feeling fine now, but do need to wear the bite guard to bed every night.

So, keep on looking for the right doctors, a great oral surgeon should be able to help in both, but my oral surgeon was clueless about the Eagles, but the best for TMJ, don't know why it happens that way.

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Shindig Have you ever had a trigger point injection in your hyoid bone was thinking of having that done soon and did all your symptoms disappear withe the trigger point for eagles

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And Emma what symptoms did the bite guard take away

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Yeah it took the pain away in the back of the throat when he injected lidocaine. I still had nerve pain (burning) across the face, but the back of throat pain was completely gone temporarily. So I scheduled the surgery with him but then a week later they canceled and said go back to the neuro...no follow up.

I'm getting a 3d CT and special xray this Friday so will have more idea of what's going on in the area...