Okay, it's been awhile, thought I would provide an update.

As mentioned in my first post, I had an MVD performed on my right side at Mayo on 8/21. At that point I was taking 3000mg of Gabapentin and 400mg of Tegretol daily, still had considerable pain and was unable to work/drive.

During that surgery, the doctor noted another possible location where the nerve and artery were near one another but were not touching. As they were in no closer proximity than a location on the left side (when examining my MRI) he decided not to act on that location.

I tried backing off the meds at the two week point, starting with the Tegretol. I was never able to reduce it successfully. After six weeks, there was still no improvement.

The decision was made to perform another MVD on 10/21, exactly two months after the first. The second location noted during the first surgery was now touching, but only slightly. The nerve and artery were separated and padded with teflon, just like the first time. The surgeon also divided/sectioned the trigeminal nerve itself.

The nausea from the second MVD was MUCH worse than the first. I had spoken with the anestethiologist before the second surgery (I'd also had nausea the first time around) and asked what they could do different. They did what they could, but on the second surgery they were pushing/pulling stuff around for quite awhile, and so attributed my nausea to the effects on my inner ear.

One month later, I am still having equilibrium problems, so I have to keep my cane handy. The right side of my face is numb from my right temple down to the bottom of my jaw, from my ear to just past my cheekbone, and then right down the middle of my mouth to my chin. I can't taste on the right side of my mouth. (I take that back, I have taste there all right, but it all tastes like a rusty cast iron spoon.) None of the muscles in my face are drooping, and I still can control them all.

On the other hand, I have been able to slowly reduce my meds to the point I have quit the Tegretol altogether, and am only taking 1200mg Gabapentin daily. Once in awhile I'll have a slight twinge of pain in one of my teeth. It's nothing compared to what it was, but I have to admit I'm pretty gun shy, so it really gets my attention when it happens.

I have good days-bad days. It's hard to predict what day I'll have my balance, or be stumbling and bouncing off walls. What day I'll have energy or feel exhausted. What night I'll get rested, or be tossing and turning all night.

The current plan is to keep reducing the meds to zero, and then proceed from there.

I still can't work or drive, but the short term disability is in place. I'm approaching the point where I have to accumulate enough documentation from my doctor to roll over to the long term disability.

Thanks for listening.