I thought I'd share my MVD experience and I also need to make sure to thank KC Dancer for pushing me in the direction of Dr. Casey. He was definitely an excelllent choice for me.
I saw Dr. Casey for the first time last Tuesday. I was quite nervous and scared I'd hear that I didn't have TN afterall and he didn't know what I had so I'd need to start all over with this nightmare. Well I shouldn't have been so worried because I don't think Dr. Casey would ever just push somebody out and tell them go do some more searching if he thought a patient didn't have TN. But it turned out that all of my symptoms were right on target with TN 2 and a few with TN 1. No other doctor had agreed with me so I was surprised to hear that I was actually "normal". By the way, Dr. Casey told me there isn't really a normal, what is your normal may not be anyone else's normal.
Then everything just fell into place. I had to wait one day for the surger so I went in bright and early Thursday morning. They gave me something to relax and that's the last I remember until about 5 hours later.
He put 5 pads in and found a section of my nerve was grey. He also found a very large blood vessel which he rerouted so it's gone now. That's scarey to think I had that all this time. I am guessing that may have contributed to all the pressure I felt all the time.
All my sharp stabbing pains are gone and the massive pressure is gone. My face is kind of numb on my right side (MVD side) but so far it doesn't bother me much. My neck muscles hurt so much at first I couldn't life my head without using my arms to help. I was also VERY dizzy and still am a little. I have to move slowly. I am still on my pain meds every 6 hours and still nauseated unless I take meds for that. I eat very little but I'm sure all of that will continue to get better. The first couple of days were the worst and now it's honestly not as bad as I expected. Oh yeah, and I get very tired quickly but I am trying to walk a bit every day.
I am so thankful I decided to have this surgery. Every day I feel a bit better and I'm not sure that it would have been good to leave that large blood vessel in there.
I made the decision that I wanted to have MVD and get off the meds that made me so forgetful and uncoordinated so I could start living life again. I was still working but not able to do what I could before. My supervisor is great and I haven't been demoded but I was really feeling down most of the time because I knew I wasn't producing the kind of work I could before. I also couldn't travel with TN and the meds. All of our kids just graduated and we want to travel now.
I've only had this for 2 years but I'm hopeful I will make a full recovery and be able to do everything I could before. I know I need to be patient and let my body heal so I will listen to it and rest when I need to. I think sleep is now my favorite pasttime (ha, as if it wasn't before).
For all the others I see having MVD soon, good luck and please let us know your stories too. Everyone who posted on here really helped make my decision much easier and I felt at ease going into it. I was not apprehensive at all!!
