Post gamma knife stories?

Hi guys I’ve been a member for quite awhile but I’m on and off so my apologies for that. Sometimes I like to know more about my avm and sometimes it does worse than good for my mental health and assurance. But anyways, I had gamma knife in 2019-2020 and 7 months later I had a grand mal seizure. I have brain edema in the whole right side of my brain. I was put on keppra and then 3 months later I had another grand mal. Now we’re in may 2021 and my life has changed ever since my last seizure, I have the worst anxiety and I don’t leave my home. I’m allowed to drive now but I’m so scared of another seizure since I now have epilepsy from my avm. My neurosurgeon says one day I’ll be able to get off the medication and my neurologist says I have epilepsy from now on.

What I’m looking for honestly is some success stories from gamma knife. I’m trying to be optimistic of my journey but it’s been such a rocky road and I’m hopeless. I feel like the problems I’m facing from the avm, brain edema and anti-seizure meds are never-ending. I’m hoping to get some assurance from this post.

Thanks for reading.

Sorry to hear your experiences. I had a brain bleed in 2016, soon to post a message about that, and had gamma knife in November of 2016. In February 2019 I received the word that it had been obliterated. I haven’t had any seizures, which is fortunate as my bleed was quite severe. I have a void or artifact, depending on who you ask where my AVM used to be. My wife is convinced void is much more accurate than artifact. I have no side effects of gamma, some lingering from bleed. I did have some swelling in the process but not requiring medication. I have nothing but positive form my process, the waiting was trying but from my current vantage point, positive for sure. Take Care, John.

Hi @Catmama

It’s good to hear from you and I’m sorry you’re struggling so much with your health. I agree that this place is often encouraging and often difficult, so I completely understand that it isn’t always easy to be here and talk about how you are. However, talking about these things is often important.

I’m not a gamma knife patient, so I can’t help you with that aspect of your plea. The reason I’m writing is more around the mental health aspects. I think you should recognise that you’ve gone through a lot – still going through a lot. So, it’s completely understandable that you’re finding it difficult to engage with life fully. You’ve got a big challenge and it has knocked you off course quite considerably.

Have you got any mental health support? I think it may be really helpful for you to have some support centred upon that side of things, not just the neurosurgeon and the neurologist.

Many people have challenges in life and the best way I think we could help you is to recognise your challenge and help you “deal” with it in a positive way. It’s a natural thing to withdraw but you deserve to get as much out of life as everyone else, so if you can get some mental health support to help you get out better, I think it’s the right thing to try out. It is probably the most difficult aspect of any injury, that it sets us back in terms of confidence.

The only strength for this kind of thing comes from within. What we need to do is get you the right help to find that strength and that will get you into a better place. I hope.

So, a story. Many years ago, I had saved up enough money and got myself my first car. About 11 months after I got the car, I drove through a traffic light junction and the lights changed as I went through. I hit another car that crossed in front of me BAM! straight in the side: no braking: I didn’t see him at all. That made me question whether I had judged the lights correctly – that the accident had been my fault or not. However, on the far side of the junction, the other lane of traffic was still waiting at the lights – both the traffic from the right and that from the left were waiting on the same signal – and one of the drivers on the far side of the junction testified that the lights where still red when the accident happened.

So I got a new car and I didn’t lose out on my insurance but by gosh every junction I went through where the lights changed as I got to the line took me for a bit of a shock. I more often stomped on the brakes to avoid going into the junction than I would before.

Now, if I were not careful, that situation of increased worry each time I went into a junction could have stopped me driving. I could easily have doubted myself each time and it could have been a pressure too far. Fortunately, I reasoned with myself and I just carried on. It took a while before the increased concern faded away but it did fade away, I think because I just had a go at carrying on.

So, I think you need to do your best to carry on. Recognise that you find it difficult but life is soooo worth living that it’s better not to withdraw. However, yours is a far more difficult situation to deal with, so get some help with that.

You’re worth it.

Hope something here helps,


That news must’ve been a relief! My neurosurgeon says mine will also take 3-4 years to be gone or close to gone. I have not had a brain bleed yet, we treated it since it was large and I am young. The avm itself never scared too much but the effects from the gamma knife set me back and I’m always anxious about another seizure. My keppra levels are also toxic so I have increased side effects from that too. Hoping it gets better soon.

My positivity has been on and off, the more my anti-seizure medication increases the more mental health issues I face. I can sometimes deal with it and exercise but now my body has gotten very weak especially my legs and I’m not sure if it’s from the avm/gamma knife or epilepsy. So it’s tough having to talk to two departments with any issue.

That’s a scary situation, I’ve been trying to overcome my fear of driving again but I get very lightheaded and don’t feel well enough to be behind the wheel. When I try to get up and overcome issues it seems to always knock me back down and doctors don’t help either. I used to be very positive and optimistic but my side effects from the gamma knife + medication are very strong. It’s such a huge waiting game on my side as well as the neuros.

My GK was in 2009 for an active fast growing AVM. The first 3 to 4 years are the roughest. I too had swelling repeatedly as well as some necrosis. I was getting better in one regard, but dealing with the unknown and a myriad of new issues along the way. It will level out, and when it does you’ll begin to trust your brain a little more. You’ll begin to recognize patterns, know what they mean, what comes next and how you have to deal with it. Just becomes your new normal. It gets better, I promise. I wish you well my friend.

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Wow 3-4 years sounds like a long time of dealing with swelling! My neurosurgeon tries to comfort me by saying it’s going down but I don’t see much of a difference in the mri scans. Mine might take just as long, who knows. Such a long journey, but I agree it’ll get better. Thank you

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The swelling didn’t go on for 3-4 years. Things didn’t settle into a new normal for 3-4 years. Sorry for the confusion.

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Oh okay! 3-4 years seems like the normal timeline for gamma knife then. By then I hope to see no swelling or avm. It’s only been a year a half since my last gamma knife.