Side effects of Cyberknife treatment for trigeminal neuralgia

Hello, did your problems ever resolve? I was thinking of having this done but after hearing this i don't think so! Hope you are better

I am also considering hs procedure as my liver is being affected with the high dose of oxcarbazapine I need to keep he pain at bay. I hope things have calmed down for you. Please give us an update.

@geedle12
My problems have not resolved. I was told this is a very rare side effect. There can be a small area of numbness. I was the unlucky one.

@valarino
I still have all my numbness, but no pain. I was told I may have a small area/spot of numbness on my face. Unfortunately I experienced a rare side effect.

I had the laser procedure after nothing helped and the meds the doc prescribed cause tremors in my arms.
It was bliss for about 8 months until the right side of my face went numb. That was 4 years ago. Although I am grateful the full pain of TN is gone, I still get nerve "critters" that crawl on my face. I take 1600 mg of Gabapentin daily and it helps for the most part. I do get a severe tingling or tickling sensation sometime that makes me want to push my nose into my face or push my eye as hard as I can. It has made me jump out of a deep sleep. I will last about 2-3 minutes. It has brought me to tears on occasion. I sometimes take Baclofen, a muscle relaxer to help relax the muscles in my face. I have also noticed that something with a little weight will calm the "critters" in my face.

I know this sounds almost worse than the TN, but I promise I would rather deal with this than to ever have to deal with TN pain again. I totally understand why it is called The Suicide Disease.

I don't know if you have had the procedure since your message, but I hope you can get some relief

I understand. I know I will deal with this for the rest of my life, but it is still better than the pain of TN. It truly is a major disruption of my life.

I wish you all the best. I am 80 years old and just try to live my life the best I can

I'm about to turn 70 and the numbness continues. I agree, it is truly a major disruption of life. I don't think anyone who hasn't experienced it can understand what we're going through. It's very weird. I keep hoping to find a neurologist who is possibly doing research to repair the trigeminal nerve, but still nothing. I wish you all the best, too!

I had Cyberknife in 2021. My trigeminal neuralgia is on the right side. In early 2023, I started having a funny feeling in my face. My lips were extremely dry then I lost feeling. It moved to my jaw then the complete right side. I was sent for physical therapy which could not help. I was sent for physical therapy with a therapist who dealt with Bell’s Palsy and tried different facial exercises which did not help. When I drink, it drools down and I can’t feel it. Medication I’m taking, Carbamazepine and Baclofen are no longer helping. I have seen my neurologist through it all but on May 15, 2026 he informed me he had no other options and have never dealt with this before so he was referring me to the Mayo Clinic. He asked that I do not drive but I have to work. My face becomes so tight it is unbearable. I went grocery shopping and reached to get a soda and they all fell and hit my face but I felt nothing, however, it burst my face open on the right side very badly. So happy my daughter was with me and the Pharmacist helped stop the bleeding. This has been a nightmare and caused me to be so depressed I can barely function.

I am so sorry. I know what you're going through. It really does affect our quality of life. What I miss most is being able to taste. I was hoping that some medical professional would at least be researching this, but I haven't been able to find anyone. Very discouraging. I am still searching and will update you if I find anyone. May have to extend my search outside of the U.S.

I'm so sorry to hear of all pain and suffering that I've been reading, for I know a little bit about it.

About 2 years ago I began to have a pain on the upper left side of my face by left eyebrow. For example, as a bicycle rider on the greenways, I noticed while driving to get there with my bike, when I rolled down the window on a nice, spring day, and immediately had to roll it back up because of the pain. I thought to myself "What is that all about, I can't even wash my hair in the shower or even scratch my eyebrow."

I scheduled eye exams at two different ophthalmology centers, but they could not find anything wrong. Finally, on the next appointment with my PCP doc, I described the situation, and he told me he thought it was TN. Sure enough, I finally went to Dr. Buck at the cancer center in Roanoke, Va. and he diagnosed it correctly.

This was last Fall a month before Halloween. I was scheduled for CyberKnife treatment as soon as there was an opening and after I had an MRI done. I was eager to have it done, because I couldn't imagine the life-style I would have to go through to endure the pain of TN. It's called Tic Douloureux because it comes with involuntary muscle spasm or twitch, and douloureux meaning painful.

I heard that the treatment is successful for about 60 to 80 percent of times. So, after the MRI and the fitting for the head gear a week before the treatment, I was ready and eager to get it, and was praying to be included in the 80%. In fact, I told my friends in a Christian group I'm a part of to keep me in their prayers when the time of my treatment came, because I believed in and depended on God's answering of our heartfelt pleas when we are in need.

It takes about 45 minutes, and its no worse than an MRI, in fact it's not as noisy as one of those. Dr. Buck's assistant, Kim was great, putting me at ease. So, on my back, I held completely still with the head gear, and everything went as planned, I heard some buzzing, and was aware that the machine was moving in every which direction shooting rays of radiation, and it was over in no time, and I was on my way. They said it would be a month or so before I would know if it cured me. I asked what I should do with the head gear. Do you know what they told me? "No, we'll just throw it away, or you can use it for a Halloween mask" and we all had a good laugh.

Over the months since then, I have not had a single trace of pain!!. Thank God.
I say this to everyone - prayer works. I'm not a religious nut, just an advocate of God's grace.
Try it, if you are struggling. He will listen.