Living With Facial Pain

DX and MVD approaching


I haven’t been here since it was the old site, and have had a lot going on, ear pain and otherwise in life.

The neurologist I had been seeing kept insisting I had atypical facial pain. The dx just didn’t sit right with me, but since he was prescribing appropriately, whatever the actual cause (I had done my research!) I figured I wouldn’t rock the boat, since getting tagged as a doctor shopper can make getting taken seriously harder.

However, my faith in him was truly eroded last year when he BS’d me (and I knew he was doing it) but he still prescribed, so I bit my tongue. Lyrica did help a fair bit - until it didn’t. (Same old story!)

Last winter, things got worse - well, more like back to my previous normal before I had started on Lyrica. I thought I would tough out the winter and see if spring improved matters.

In that interim, though, I saw a shoulder doc for shoulder pain that turned out to be stemmed from my neck. Ended up with a neurosurgeon who ultimately did a cervical fusion.

While I was recovering, my ear pain started kicking up a few more notches, and I called the neurologist. He upped my dose of Lyrica, but after a month, that still hadn’t helped. I decided at what would have been my final post-op appointment with the ns, to ask for a second opinion.

He immediately thought glossopharyngeal, asked a few questions, and sent me off for another MRI. (Last one had been 2 years prior, and was normal.)

He had some different images taken, though, not the same as the last one, and it did, indeed, show a vessel playing footsie with the nerve. (okay, so that isn’t how he said it. He said it was irritating it. Same thing, right? :grin:)

He bumped the Lyrica up another 100 mg, and - nada. Then he took a more extensive history (I have a weird ear pain history from infancy), and decided I should see an ENT before we consider surgery. ENT said he didn’t see anything that would account for my pain (primarily ear, though I get some throat pain, too), so now I am scheduled for an MVD on August 11.

Fingers crossed!

(And if anyone has any experience with MVD, particularly MVD for GPN, feel free to pipe in!)


You are lucky they found where it’s compressed. Hopefully you will get relief via MVD. MY NEURIOLOGIST QUIT ON ME. Because I do so crappy on antiseizure medications he said it was surgical and the neurosurgeon said its not a surgical option so I’m stuck in the middle, hating it. Many people have had some success from MVD. praying it works for you! Good luck!


I had my MVD awhile ago for TN-1. Immediate, 100% relief when I awoke from anesthesia. Unfortunately pain returned after 4 years. ON combination of Tegretol, Neurontin (before Gabapentin) and Baclofen for years. Then around 2005 went into remission. Gradually weaned myself off all drugs. Attribute success to large dose of V B-12 daily (5000mcg, sublingually). Never had GPN but a lady in my support group did and got complete relief from her MVD. I understand the success rate for MVD with GPN is higher than with TN. Good luck on your surgery.


I had neurosurgeon turn me down for MVD because said V1 area usually not successful.

He wanted to refer to gamma knife but i refused. Both my pain dr and my neurologist said DON’T do GK (correctly from what I’ve read) . So now I’m fighting with insurance to get second opinion. (And someone other than at the same dr office)

Gosh 4 yrs of success sounds great right now to me.

I also have ATN in V2 and wonder in success rate of ATN to MVD?