Well the C-Spine MRI came back negative for signs of M.S. My neurosurgeon is now having me start a daily regiment of 300mg 2x a day of tegretol to see if that helps control my TN. If it does then he says I am a candidate for "procedures." What a nice euphemism for Brain Surgery. He seems to think I would only be a candidate for Gamma Knife because there are no visible compressions on my MRI. But reading all the posts here makes me think that compressions don't always show up on MRIs (plus what I read in Striking Back). Not that I want MVD surgery, but I sort of wish it was at least on the table. I don't even want Gamma Knife. But then again I do! I am sick of medications. I am sick of being home and not working. Bah! I am sorry for complaining. I have only had TN for 8 years. I know many of you have suffered for much longer, and much worse.
Back to M.S for a moment. I know they "ruled it out." But that is just for now. Is it normal to still be worried I might have it? I know it takes years to diagnose it. I do have a "spot" on my brain. Granted it has been stable for 8 years, but it is there nonetheless.
On a good note- I may be getting some work from home shortly! I hope I can do it :D.
LBhiker,
Compressions aren’t always seen on MRI as you noted…in fact I just read of one of our members who had MVD a year ago pain returned, had MVD again within the year and TEN more compressions were found…both MVDs performed by very experienced Neurosurgeons!
Research and consult with at least two neurosurgeons before making a decision.
My compressions we’re never seen and they were significant compressions until in surgery. I had mris over a ten year span, nothing was ever seen…
That dose of Tegretol is the start of the therapeutic range…I’ve read 600mg-800mg offers many people a pain free existence.
We’re all different however… I hope you start to get some continuous relief!
Positive thoughts! (( hugs )) Mimi
Hi Mimi, I will try to be bolder and insist on meeting with more than one neurosurgeon (at more than one hospital). It is my brain after all! Thanks for the story about the compressions found that weren't on MRIs. I am seeing my Neurosurgeon with my husband on Feb. 12. I am going to go in with lots of questions written down. I am building up to 300mg 2x a day of tegretol because neither my neurologist nor my neurosurgeon told me if I should just start at the dose or work up to it. They aren't great at clear directions/returning calls. I hope to be at that dose by Monday night! Anyhow, thanks for your response. I appreciate you reading my babble.