GKS for TN

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3 weeks ago I had GKS for TN.  No pain for 1st 2 weeks but frequency and level of pain returning daily. Back up to 1000m+ of tegretol prolonged release.  Is this normal?

john

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5 Replies

  • Posted

    I had the cyber knife done about 6 months ago and never had any relief. In fact, the procedure with the mask on my face made my pain spike up very bad on the day of the procedure. I think it's going to be a await and see kind of situation. I was told that after two months, you would know if it worked and if so, how well. 

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    • Posted

      Thanks for your reply. I do hope things improve for you I keeping my fingers crossed that this is only temporary but if GKS on the Trigeminal nerve confuses the signals later why is it not happening now? The answer is probably somewhere within the reason for me not being a brain surgeon
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    • Posted

      I'm not sure how it works in depth. You're right, we are not brain surgeons so the logistics of it all can be unknown. My radiation oncologist who did my procedure told me that the process was attempting to deaden or numb that part of the trigeminal nerve that was sending the pain signals, which might result in facial sensation changes and numbness. The fact that your face pain changed seems to indicate that something good might be happening. If not long term, then maybe they can redo the procedure since you showed results at least. I'm meeting with my doctor as a follow up for my options soon, I'll let you know what he says. 

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  • Posted

    When I had it done, it took a week or so before the pain went away (as the lesion grew on my nerve), lasted for about 2 months with very minimal pain, and then came roaring back just short of 3 months after the procedure. All the while, I stayed on tegretol. Even after my MVD, my doctor kept me on tegretol for a few weeks until it was apparent I was pain free. 

    That's my 2 cents.

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    • Posted

      Hi and thanks for your email. Two days ago and after my previous discussions I had one serious episode that lasted about 10 minutes! I am now on 1400mg tegretol to control the pain but of course I have to contend with the side effects. Your message has given me hope for the forthcoming months. Thanks and good luck to you.
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