Quote:
Originally Posted by ella138
i had this on the Braintalk site, so I thought I would update this one too.
July 22, 2007
2 year anniversary of my MVD.
Just thought I would let you know how I am doing two years post MVD.
Physically
•Still off all meds
•Still pain free
•Managing to sleep well even without Tegretol (that took a while)
•Some twinges or sensations once in a while, which may or may not be TN related and often related to the timing of my menstrual cycles (a few days before or during).
•Small area of permanent numbness in the lower lip/chin area
Indentation in the bone on my scalp has not gotten any better or worse. Wearing sunglasses for an extended period of time still bothers me .
•The ice pick headaches have definitely gotten better. Not gone altogether, although I’m still not convinced they are TN related either.
Emotionally
•TN still has an emotional hold on me
•I still assume that every sensation I feel is TN coming back, when at my age (50 in a few days) the sensations are probably more likely caused by my receding gums.
•I’m still afraid to fly for fear of setting off an attack
•I’m still afraid to go to the dentist for fear of setting off an attack
•I still carry a few tabs of Tegretol in my purse along with my Advil and Tylenol
So for me, day-to-day life has become very normal. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over.
I continue to not take any day without TN for granted. I was one of the lucky ones for whom the MVD worked thanks to an excellent experienced MVD surgeon (and whomever was watching over me upstairs )
I would be very happy to answer any questions for anyone who is about to venture on this journey. Please just pm me.
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I am so happy for you that it worked. My tics stopped 10 years ago and unfortunately the fear of them coming back is always there. It is an insidious part of this disorder.
I was unlucky in that my MVD, done by Peter Jannetta in 1979, was not successful. It also left me with a facial paralysis of the left side of my face. There has been some movement return but it is almost 100% gone still in my forehead and the smile looks like, as one stranger commented, I had a stroke. It also causes my eye not to close completely and I have had to have it sewn shut a few times over the years. (It was supposed to be closed permanently after the MVD but it was so ugly I had opened AMA.).
I have friends who have had successful MVD's and when they work, as with you, it opens up a whole new life.
Again, congratulations for your success. And also for your staying here. Often, once people no longer have the pain they leave the groups they are with/on not wanting to be involved anymore. It is a true kindness that you want to stay and help.
leej