Hi All,
To share my story; TN for past 5 years. Began with trileptal 2oomg twice a day and it worked for about a year. Symptoms returned, Dr upped doasage to 300mg twice a day. Next year (always in Sept??) symptoms returned. Dr. added Neurontin to the trileptal and upped that to 600mg twice a day.Worked for another year. Symptoms returned. Dr. added Lyrica to the mix just at bedtime. Did not help. He said it was time to consider other options - gamma knife, glycerol injection, or MVD.
He referred me to a neurosurgeon at U of P hospital (Phila). I went. He explained everything - of course I had already researched it all. I got a second opinion 2 days later at Jefferson Hospital for Neuroscience (phila.) I chose Dr Moshell at Jefferson. He spent more time showing me the MRI and reassuring me that I was a great candidate for the surgery; young enough (age 60), in great health, and no previous nerve damaging treatment for TN (such as glycerol or laser). Jefferson also replaces the hole with your own removed circle of bone; Penn would have used titanium plate. Dr Moshell had done a Fellowship in MVD surgery and had already performed close to 400 when he came to Jefferson last August. He feels that MVD is more of a "cure" while the others are more a "treatment".
In the last month I had lost 15 lbs. because all I could eat was soft food - couldn't chew. Writing notes because I could not talk. Avoiding dentist for a year (although he is actually the one who diagnosed it and referrred me to neurologist in the first place). Brushing teeth only on left side and very gently using Q-tip on right side. When it became painful to swallow even water, I knew I had to do something fast. Thankfully the surgery had been scheduled 3 days after that.
Went in 5:30 am. Surgery around 8am, 3 hours later in recovery. Spent the night in ICU. Got up in the am and they brought bkfst. I looked at the toast and thought "I can't chew this". Began to break it into little pieces and remembered I had the surgery so I tried chewing. Heaven!!!! I could chew with no pain. Nurse brought me toothbrush, etc - it felt sooooo good. Put me in step-down unit and I came home on the third day. Staples/scar nice and neat, no pain. A little headachy.
Dr's are coordinating to wean me off the meds although he warned that I may not be able to be totally med. free. Funny, my jaw gets fatigued when I eat meat - haven't chewed in so long.
I am deliriously happy with results. Was very scared but believe me, the prayers of my family, friends, and church miraculously gave me an incredible peace the day before I went in which stayed with me. I thank God for His hand in my healing and for sending Dr Moshell to Jefferson at the time I needed him.