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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Wow, Ella, I had my MVD at a Hospital in Tampa I was under heavy sedation and some a-typical symptoms. I left with a walker because of all the pain meds I had been on and it wasn't until February when I went to a clinic and stayed 6 days to get off all the drugs then I got Anesthesia Dolorosa. I wore a halo for my first surgery which was Stereotactic Radiosurgery, no changes in the pain. Many Neurosurgeons/neurologists told me an MVD was risky, but my husband was anxious for me to be well as were my family members so I did. Now, my pain is in all three nerve areas of the face as before it was in the lower jaw. It is the worse pain I have ever had, I am scared to death of it. I take a different pain medicine not Oxycontin like before when I was up to 80 mg 3x per day -- wow, hard to believe, but I am so afraid even now. So it was 6 months later that I developed the AD. I feel like I am going to die sometimes because the pain is so intense and I wonder what will happen if I become immune to pain medication? It has been 10 years since I got TN and I was 40. Some drs. just blew me off and said I was too young. Now, my 76 year old mother is having same symptoms. Congratulations to you and I pray this pain I have will find a way out. God is my neurosurgeon now. Way to go, woman. Thank you for sharing your experience.