What side effects have persons experienced after cyberknife treatment for Trigeminal Neuralgia?

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At age 82 i received the gamma knife treatment at Wash. U in St Louis for trigeminal neuralgia on the right side of my face. it worked well with no side effects but pain returned after five years. A year after pain returned I received the cyberknife treatment at Stanford U ( July 2017) with pain diminishing after six weeks. ( wonderful experience with Dr. Chang and staff) After about a year my face became numb and right eye dryer than usual. The worst is my mouth fills with saliva faster than I swallow and hinders my speaking. And the droll runs down my face. Has anyone experienced these types side effects? However the best is there is no pain so will live through these nuances! I should mention 1200 Neurotin did diminish the pain before and after the surgery! Thanks , Thomas!

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  • Posted

    Hi Thomas,

    I had Gamma Knife Surgery July 2016. My TN got worse until !st March 2017 when I woke up and had NO PAIN, by the end of April my face on the left side began to feel numb this spread to the whole of my left side of my head, then I began to experience odd sensations on the numb side - frantic itching, pins and needles, frozen or really hot, badly grazed, spiders crawling I feel nothing when I touch the left side but feel these feelings it was diagnosed as "anesthesia dolorosa" which can be an after effect of Gamma Knife Surgery. I was told that 5 years was the longest it could last but as I also have MS it would only last about 18 months but all the time my face felt numb the TN could not return. I have now gone over the 18 months and am terrified the TN will return. I agree anything is better than TN. I wish you the very best and hope your reactions get no worse and I hope improve for you. I live in England and my Gamma Knife was preformed at The BRI hospital in Bristol.

    Sally

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    • Posted

      Thanks for your reply Sally! Contrary to your experience my pain diminished after receiving the Gamma Knife with no pain or side effects for nearly five years. That positive experience led to some disappointment with Cyber Knife treatment with its apparent side effects. Again I am pleased with no face pain but wonder if the excess saliva hindering my speech and my embarrassing drooling is a side effect experienced by others. My Mother was treated for the rigidity type of Parkinson and drooled excessively and I, as she, have some difficulty in walking. I recognize the numbness is a side effect but wonder if the excess saliva might be from some other malady. Sally, I certainly hope you remain pain free and some of your described side effects subside! Best wishes for 2019! Thomas in California!

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  • Posted

    Hi Thomas, I do experience the saliva / drool problem that you mentioned and its embarrassing at times. Definitely on my mind during social interaction

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    • Posted

      yes, a problem! In fact my mouth is so full of saliva, I can hardly speak! Now did you receive treatment to your fifth cranial nerve in your face by a type of surgery for trigeminal neuralgia? Or can you attribute your excess saliva to another medical condition? Thanks, Thomas

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  • Posted

    I had MVD for TN in March 2016. No excess saliva in my mouth after. They also had to do a partial rhizotomy so I am left with no TN pain but a mostly numb left side of the mouth so I sometimes have drool come out involuntarily. I've posted all about my experiences. Click on my name to read my posts.

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