Has anybody had cyber knife procedure for TN, how long have you been pain free if it worked?
Hi Ernestine,
I have had the CyberKnife procedure done once. I went three days in a row for one hour each day. It was about eight months before I felt any relief. I woke up one morning and the pain was just gone. It was not gradual at all for me. The pain just disappeared overnight. Unfortunately, it was only gone from April to September. The Neurosurgeon then diagnosed me as having Atypical and did not recommend another CyberKnife or MVD. I have researched the CyberKnife procedure as thoroughly as I possibly can and the results I found online were consistent with my condition of ATN.
I believe it’s worth a try for you if nothing else is working. Good luck and let us know what you decide.
Mike
Thanks for sharing
Hi there -
I had CyberKnife treatment in June for my TN diagnosis (a one-time 1-hour session). Until August (for about 2 months) I actually felt more pain - more frequent, more intense episodes of the “electric shock” pain. Since then, my pain has subsided almost completely, replaced instead by some tingling and numbness.
My neurologist initially recommended a decrease in my oxcarbazepine dose (from 600mg daily to 300mg daily), but the pain was back. Now I am at 450mg daily to keep the pain/tingling at bay, and the side effects are negligible compared to the prior level of pain.
Personally, I think it was worth it, as my quality of life has returned to normal. The oncologist did warn me that the pain may return at some point and a 2nd surgery may be required, or I may want to evaluate microvasular decompression. I decided against invasive surgery for the first try and I’m glad I did.
Hope all goes well for you, Ernestine.
Best!