I'm one of the small percentage of MVD'ers that went horribly wrong and left me in more pain than before. Yesterday, I was shocked in my face several times. Last night, I was shocked out of my sleep and as soon as I stepped out of bed this morning, I was shocked again.
I haven't had shocks quite like this in seven years. ( I was an atypical TN and had a general, constant burning, aching, throbbing, stabbing pain). Only very early on some seven years ago was I getting shocked, but no where like this.
On top of the shocking sensation, I still have all the the painful numbness. The tip of my tongue, most of my gums, some parts of my teeth and a SMALL part of my chin are very numb with constant, continuous pain. Only every once in a while, this does leave and just tend to go on a hiatus for a few days, only to come right back. As of this morning, I have been pain/ burning free in my mouth only to have been shocked to death yesterday. I am seriously about to lose my mind. I am on a host of medications, and they can't add anything because I have a liver/bile duct problem and they already had an issue where my liver enzymes flew through the roof and I was throwing up for a day straight.
However, when at the pain clinic on Friday, I complained to the doc how the burning sensation was spreading. He stopped writing and asked me to repeat what I said. I told him again that on my worst days, my cheek, chin, half my tongue and my gums are burning whereas it was just generally in the tip of my tongue. He told me this sounds like a new compression to him. Huh? What? I'm trying to get on with my life the best that I can, but this painful numbness colors my world. I wish I could just go to sleep somedays and wake up normal again. Needed to vent.
Audura, I would tend to share your doctor's reaction. It sounds to me as if the Teflon installed during your first MVD may have slipped. If the operation was seven years ago, it's also possible that another compression has developed. In your case, however, re-operation might be complicated by your having Anesthesia Dolorosa (AD) in reaction to the first MVD. I think you need to consult with a neurosurgeon who does a lot of MVDs for facial pain conditions.
If you are on a "host" of medications, it may also be useful for you to schedule a drug interactions survey with your neurologist. That can be especially important if you've had a history of liver enzyme elevation.
I also have a surgery scheduled for May 21, and reading this scares me too. I will pray you have a positive outcome eventually, and like Bob, I'll be forcing myself to pursue positive thinking between now and the 21st.
Thank you all for your positive thoughts. I have been pretty pain free since I last posted this ( but still needed to vent) and ALOT more of my numbness has diminished.
Red- I had the MVD in September of 2011- not seven years ago. The seven years was in reference to how long I had trigeminal neuralgia before I had the MVD.