Quote:
Originally Posted by Clairemc
Hi, I'm 25yr old TN sufferer. I was diagnosed in Nov 2008, although I have suffered for over 8yrs prior to diagnosis- having many root canals and teeth removed before they realised what my pain was!!! I have been put on Gabapentin 300mg three times a day and can add in tegretol 200mg 3 times a day when it gets bad. I had an MRI scan in Feb and they said I had some blood vessels quite close to my nerve, but they weren't seen to be pressing on it. I don't want to be on my meds for the rest of my life and wondered if anyone else had a similar diagnosis to mine and has had surgery. I just want to be pain free and drug free as my medicines are already losing their effectiveness to control my twinges etc. Thanks, Claire
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Hi CC.
I'm now 42 and suffered with TN since 2002. Over the years as the pain progressively worsened, I tried everything. I tried diets, herbal remedies, acupressure, acupuncture, chiropractics, and then on to the meds, Tegretol and ramped up all the way to 1600mg per day. Once the meds quick working I had reltively few choices as I wanted a permanent fix.
On September of 2008, I had a gamma knife procedure performed. Unfortunately, it only gave me about 60 pain-free days after the it took affect. I recently (4/3/09) had the final procedure done; MVD surgery. Yes, it was scary. Yes, it was painful for a few days. I woke up from surgery having NO pain strikes at all and haven't had any since. It feels quite miraculous!
I was like you in not wanting to spend the rest of my life on drugs. Tegretol is extremely hard on your liver not to mention fatique, muscle soreness, bad short-term memory and so on. I know there are several other options other than the MVD surgery like the 'balloon compression' etc. If my surgeon had read my MRI back in '06, I would have opted for the MVD back then and saved myself thousands of dollars on other temporary treatments and tons of suffering.
My advice is to get a 'kickass' neuro surgeon (like mine) to read your MRI; not your primary doc or even a nuerologist. Only have a seasoned neuro surgeon read your MRI. They will help determine whether you are wasting time and money on useless remedies. I know this from my own experience and will gladly give you doctor's information if you would like.
Best of luck and I hope your pain is manageable.
Todd