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Old 04-09-2011, 11:35 AM #6
jjlsongbird jjlsongbird is offline
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Join Date: Oct 2009
Location: Pennsylvania
Posts: 131
15 yr Member
jjlsongbird jjlsongbird is offline
Member
 
Join Date: Oct 2009
Location: Pennsylvania
Posts: 131
15 yr Member
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Sorry for taking so long to respond. I had a Rhizotomy in May of 1998. I was pain- and medication-free for maybe 4-1/2 years after that. At first I didn't like the numbness the procedure created, but after awhile it was comforting. The procedure threw my bite off and I can no longer move my jaw to one side, but that is no big deal. Just had to have some teeth ground down a little so I could chew better. I haven't heard of anyone else that had that problem and I must admit I didn't follow instructions to exercise my jaw by opening it wider and wider so I can't open my mouth as wide as I used to. (Makes it a little hard on the dentist but not too much.)

I decided on the procedure when 1200 mg of Tegretol plus morphine wasn't holding the pain. At the time scans couldn't show compressions and I wasn't ready to try a MVD.

When the pain came back, it wasn't as bad as before and lower doses of Tegretol took it away. I was fairly stable at 600 mg a day, though I hated the way I felt on it. Finally I decided to try a balloon procedure. I got a hemotoma (no big deal) which went away. A week or so after I got off the Tegretol, the pain started to come back. Back on Tegretol I went and over the next year the pain began to escalate. I added Topamax to the Tegretol. Still the pain was escalating in frequency and strength.

Finally I was ready to try a MVD. Scans showed that I might have several compressions and doctors do find compressions that don't show on scans when they operate. So I had my MVD in October of 2009 and taped off the medicine. I have been pain- and medication-free for over a year now. My neurologist is no longer following me - said I may not need him again, but call if I do.

The time to try something for me is when I can't stand the pain or the side effects of the medication or when the pain starts increasing frequency or intensity. There are no easy answers. I've read that having an outpatient procedure can lower the rate of success of a future MVD, though I don't understand why that would be. It sounds like you are putting up with a lot of pain - only you can decide if you have had enough of that and want to try a procedure to get relief. You didn't mention your age (or I missed it) and that is something to consider. If you are fairly young, several rhizotomies probably wouldn't get you through the rest of your life - so then what. I had the MVD at age 67 - I didn't want to have a rhizotomy then and need another something at age 72 if I could help it.

Good luck with whatever you decide to do! Keep us posted.
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