Happy Holidays to my fellow TN travelers.....My first procedure for TN was six years ago...GammaKnife..it roasted my nerve and made my condition worse. Over four years or so I had four balloon/glycerol compression procedures that helped me get by but only for short periods...then the "feared invasive" MVD in 2010. The operation revealed a severe atrophied trigeminal nerve with a large vein attached as opposed to a vessel or artery. They removed the vein but left the old worn out nerve in place. Five months later pain returned and just got worse and worse. My surgeon referred me to a pain clinic where they recommended an electric implant system installed into my face...($50,000) I went for a second opinion to a doctor, very experienced in MVD surgery, who had done a few of these implants. He said they did not work for TN and that he had implanted several and had to remove them. He recommended that I "section" the nerve, which of course is also feared. Sectioning or cutting is how TN was treated in the old days. I asked myself...its either jump off a bridge or cut the nerve so what should I do ?...I'll cut the nerve. I went into surgery Nov. 29 and they opened my old scar and inside they went...they found the beat up nerve barely hanging on and it had a large vein attached underneath it. The first MVD surgeon had cut away an attached vein but had somehow missed the other vein underneath the nerve. My surgeon went ahead with his plan to section the nerve as not much was left of it anyway. So here I am 19 days after surgery feeling no pain and writing to you folks. I have decreased my intake of tegretol from 800 mgs per day to 200 and my dylantin from 300 mgs to zero. I have not much feeling on the left side of my face and mouth and I cannot feel my eyeball but its moves and sees just fine. I cannot feel my teeth on the left side and have little tingles up and down my face every so often. I was numb before the surgery and much more numb now...but so far no hint of TN pain...zero pain shocks.
I hope this brief narrative can help someone suffering out there make a better decision for themselves. When a person has severe TN its hard road to go. In my experience the Gamma Knife and the other balloon compression procedures just made things worse for me and my nerve in a big way. I wish I had not listened to the people who sold me on "non-invasive" and "pain free" procedures. As far as I am concerned the MVD is the only way to go. Wish me luck and may you have a pain free Merry Christmas and Happy Holidays...God Bless.