So after two years of trigeminal neuralgia, three medication changes and a lot of crying in the car, I finally have my Gamma Knife date. Tuesday morning, 7am check in, frame fitted around 7:45 they said.
And now instead of being relieved I am lying awake thinking about four screws going into my head. I know it's local anaesthetic. I know thousands of people have done it. My brain does not care about statistics at 2am apparently.
The nurse said "most people say it's not as bad as they expected" which is exactly what people say about things that are bad. Can anyone who has actually worn the thing tell me what it honestly felt like? Don't sugarcoat it, I'd rather know.
Had the frame in November for an acoustic neuroma, so this is fresh for me. Honest version: the numbing injections sting, properly, for maybe ten seconds each. Four of them. That was the worst part of the entire day and it was over before I'd finished swearing in my head.
The pins themselves I felt as pressure, like someone pushing a knuckle hard against my skull. Not pain exactly, just very firm and very weird. The whole fitting took less time than my morning coffee. After that the frame is heavy and you feel a bit like a satellite dish, but it stops registering after half an hour.
Tight headache that evening once it came off, gone by the next day with paracetamol. Two tiny scabs on my forehead for a week. That's the honest whole of it.
Agree with the above. AVM here, treated last winter. For me the waiting around between the scan and the treatment was far worse than the frame. Bring headphones and a very long podcast.
R #4 May 20, 2026, 11:05 pm Gwen, the 2am brain is a liar, mine told me the same stories the week before my own treatment. I had the frame for an acoustic neuroma and I kept notes the entire day precisely because I could not find an honest description beforehand. The short version matches what Mark says: the injections sting, the pins feel like strong pressure, and the fear was worse than every single part of the reality.
I turned those notes into a full write-up, what the Gamma Knife frame actually feels like, and there is a companion piece walking through the whole treatment day hour by hour so nothing on Tuesday takes you by surprise. The waiting really is the biggest part of the day, Susan is right about the podcast.
One practical thing: tell the team on the morning how anxious you are. Mine adjusted nothing medically, but they narrated every step before doing it, and that helped more than I expected. Come back and tell us how it went.
Meningioma, treated March last year. Only thing I'd add is that one of my pin sites at the back stayed tender for about two weeks and a small patch of my forehead was numb for a month or so. Both normal per my team, both went away on their own. Mention anything like that at your follow up call but don't let it rattle you.
Also seconding the headphones. I watched blue tits on the feeder outside the waiting room window for two hours. Wasn't even mad about it.
Reporting back as promised. IT WAS FINE. The injections stung like everyone said, counted to eight and it was done. Pressure yes, pain no. I actually dozed off during the treatment itself, which if you'd told me last month I would have laughed at you.
Face pain is still with me for now, they told me clearly it can take weeks to months for the nerve to respond so I'm not reading anything into that. But the thing I lost sleep over for a fortnight was genuinely done in five minutes. Thank you all, this thread got me through Tuesday.
