Hi Jim,
I don't know if I can help - dear Tina sent me an email asking me to check in and talk...I've been off of the forums for a while. I've had only one MVD, but I have had 2+ brain surgeries - 2 major, and a few repairative. The second one was to install a VP shunt to regulate high intercranial pressure.
I guess the first thing to ask is, how did your first MVD go? Was it pretty smooth? Any bumps in the road or problems post-operatively? What did your surgeon have to say?
I just happen to be the poster-child for post operative complications - I've had most all of them, plus one so strange that my NS came out of my surgery to my husband saying "Well, I've never seen THAT before", and he's been a top NS in this area for years and years.
So I guess that I'm a cautionary tale for those contemplating brain surgery - all of those things that you sign off on in the disclaimer can come true, and often even when your NS is very very experienced. Most of mine were temporary, thank god, but I have met others who suffer greatly for making that decision. The second brain surgery I ended up going code blue and spent almost a week in intensive care with a breathing tube (for half of it). Again, My NS is very experienced - these things just happen.
I would advise exploring other routes - a different med regimen, nerve blocks, lidocaine infusions, peripheral stimulators, almost anything else (try to avoid the treatments that injure the nerve, though). I take a combo of nortriptyline, neurontin, trileptal (cousin of tegretol), lamictal, and opiates. They all benefit me in certain ways, but I do have to admit that I have real memory problems. I don't work, so I often don't need to worry about that, though. I was granted full disability by both the govt, and my private insurer through work. Take the highest disability benefits that you can, those of you who are still working - change it now.
All of this is my experience and my perspective only - I do hope others will chime in on this.
Best of luck, hope this helps,
Lily