Gamma Knife surgery

I`m have an AVM in the right hand side of my brain, had a seizure or 5 in 2010, Ive been half blind in one eye for about a year and a half, but that cleared up somehow... I feel kind of bad for being on here since I seem kind of lucky that everything that`s happened to me seems miniscule compared to a lot of people here.

But, I`m scared. I don`t really know what the after symptoms are of Gamma knife radiation, the doctors arnt very clear about it and I`ve looked it up but it seems different everytime.

I`ve read that you could go partially deaf and have brain swelling as well as feeling sick for a bit afterwards... anything else? I havn`t much of a clue actually. It`s kind of scary. Has anyone here experienced Gamma knife surgery?

Hi Vonzero,

We are also from East Sussex, My 15 year old daughter is having her gamma knife surgery next Wednesday at the Cromwell Hospital, London. She has a small avm deep in the back left side of her brain and suffered a bleed from it last April. Like yourself we don't really know what to expect after she has it done. All I know is that we can't take the risk of it bleeding again, which in time most definately would. We haven't really been informed of any risks but I have read of so many awful things that have happened. Fingers and everything else crossed for her.
Lisa.

I have had Gamma Knife radiation 3 times. No major side effect for me so far. I had been having migraines for a few days prior to the 3rd treatment & ended up with headaches for the next few days--enough that Maxalt & Tylenol weren't working & I had to get a prescription of Norco & take that for a few days. The first two times I had a bad headache when they removed the halo & didn't feel like doing much other than hanging out on the couch for a couple of days.

I've also had a craniotomy to clip two aneurysms. GK was WAY easier than a crani!

I havnt had a bleed yet but that`s the thing about it isnt it.. you can`t risk it. Anythings better than that.

My opthamologist was telling me about his brother having gamma ray on his ear I think, he seems convinced that it`s quite amazing technology.

I hope shes alright, I`m sure she will be. Tell her I said hi and I hope it goes well x

Doesnt sound too bad then! Ive just heard that some people get some really bad affect like going partially deaf and whatnot.

I guess Im just gonna have to wait and see what happens to me, its not like I have a choice lol.

Hope youre ok and you dont have to have any more gamme knife or craniotomies again! they sound awful, youre very brave. x

i had GK in 2011 and apart from swelling headaches and some other side effects caused due to swelling im doing ok. The other side effects includes slurred speech,right hand weakness but steroids cured both symptoms. I still hv headaches but they r manageable with no medication.Hope this helps.

Good luck with ur decision.

I've had LINAC radiation three years ago and my avm is now obliterated. I just got my results from an arteriogram on the 18th of Feb. I had no side effects after the radio surgery.

The unknown is scary but it was the best decision for me. Mine was not operable apparently. I'm so happy to be avm free and can go on not worrying about it anymore. Best of luck! Keep us posted.

Rachel

hi I had gamma knife surgery twice in 1999 and 2002 and didn't have too many problems afterwards. the skin on my scalp on the back of my head was a bit numb but the feeling returned after a fortnight. no headaches etc. My temp lobe epilepsy did seem to get worse for a while more seizures but that has settled now. my avm is now obliterated which is the main thing after 20 year with an inoperable avm. don't worry about having this done it doesn't hurt when they put on the frame its just a tight feeling and its all worth it.

Hello Vonzero...I had GammaKnife in September of 2008 for an AVM Bleed in the right parietal/occipital lobe. The side affects that I remember experiencing were double vision, weakness, major head pains, and light (sunlight mostly) sensitivity with my eyes. I remember sleeping a lot for a few weeks. Those side effects began to cease a few weeks post GammaKnife.
Good luck to you in your decision, and your journey.

Hi my avm was in my right temporal lobe. My docs told me that as it was in this area there was less chance of any side effects afterwards or any damage as this part of the brain didn't control speech or sight etc. However, I do have short term memory problems but this could be due to my bleed, 30 years of seizures I've never found any meds to work and then the 2 lots of gamma knife treatment. However I'm pretty good for my 52 years considering. This place is really good. There was nowhere for information when I had my bleed and no one who understood. Don't worry too much. Good luck.