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Living With Facial Pain

DX and MVD approaching


#1

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!)


#2

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!


#3

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.


#4

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?