I've been dealing with my GPN off and on for the past two years, and I'm in the middle of another massive flare up right now, so tons of fun as you all know. Anyway, I went back to see my neurosurgeon, Dr. Joshua Dowling at the Washington University School of Medicine here in St. Louis, and we've increased my dose of gabapentin, with the option of surgery if the pain doesn't subside or the side effects are too much. Unfortunately, the side effects have been too much. I've been living in a mental fog for the past week and always tired.
So far, my options are to either try a different med, like Lyrica if the insurance will cover it, or a combination surgery of MVD and rhizotomy of the 9th cranial nerve. I'd like to ask about the Gamma Knife, but I haven't seen too many good reviews of it on here.
I'm not too concerned about the surgery itself since Dr. Dowling has done several of these, and he specializes in the cranial nerves, especially the 5th (Trigeminal) and 9th.
Has anyone had the MVD and rhizotomy? If I go through with it, what areas do you lose feeling and how difficult is it to live with that?
Hi iv had 3 mvds also had gamma knife before my 3 r&d MVD which I had my nerves severed . My 1st MVD I was left with left vocal cord palsy why ?? My surgeon couldn’t say . With my 3rd MVD I have been left with soft palette palsy also and awful reflux . I still suffer nasty ear pain which can be intense . I don’t have the severe stabbing that I use to have that dropped me to my knees 24/7 the reason for trying anything that was offered to try and help me . After the 3rd MVD has been the hardest suffer virtigo nausea choking coughing spasms , very poor vocals . I have just had reinivation nerve surgery to try and build up the vocal cord so I don’t have to have injections every year to bulk it up . You have to weigh up your life , I had no life at all I was in such constant pain . Though I struggle and depression is a problem it’s still better than before .
I wish you luck and hope what ever you decide works for you .
I'm 4mo post MVD with a partial rhizotomy and I'm glad I found the right surgeon that did it. I have not lost any feeling anywhere and most of all, no more nerve pain. The only minor issues that I'm dealing with right now are some coughing spells and my taste buds with a slight lemon zest taste. However, these are slowly but surely fading as my Dr indicated they would. The main thing for me was finding the right Dr for me, it sounds like you have so get er' done.