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AVM Survivors Network

Post gamma knife question

Hi there. I am almost 7 month post GK for left frontal avm. 6 month scan showed its a littlebsmaller which I think is really good. Approx 2 week ago started getting frustrated , headaches and crying alot. I had an incredibly hard time doubling a recipe yesterday and today I forgot how to make a star. Couldn’t figure it out. My family pressured me to call my Neuro so I did. He said around this time it is common for things like this to happen as the AVM is actively changing and the blood flow is changing. They offered a scan if I was worried but I declined feeling some comfort this happens and figured if it gets worse I will get a scan. So has anyone else experienced this after GK? If so did it last the 2 to 3 years? Thanks in advance :slight_smile: and Happy almost Thanksgiving

I had Gamma knife in November of 2016. It is common to have some symptoms around the 6 to 8 month mark, often in the form of swelling and some need steroids to calm it down. I did not need anything but did notice some head aches and “ice pick” head aches. The ice picks started and at a point would happen a few times a day, scared the you know what out of me as the first couple times I thought I was having another bleed. It was very fleeting and they gradually disappeared. I think it was over a few months. I did not have any other issues but do know of many who took a course of steroids and always right in this time frame as the radiation really starts to do its thing, which is what we want. The fact it is smaller at 6 months is really good news! I’m a big believer in making the call, like you did, with concerns. When is your next scheduled scan, one year mark? Take Care, John.

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I have gotten a few of those “ice pick” feelings. I called it a lightning strike to my husband. You sit there and think is this it,and then it goes away. My avm is unruptured. I’m so happy there is already improvement in the size. Yes my next follow up scan is the 1 year mark. Thank you for responding. Hope you are doing well.

The lightning strike is also a good way to describe it! I’m doing really well, thanks! I had an angio in February of this year and got the news that my AVM was gone. The only thing I have remaining is pulsatile tinnitus that I can hear when really quiet. I doubt that will go away now but the angio showed no irregular flows. Take Care, John.

That is awesome news!!!

Hey your AVM is going to be changing as the vessels scar off from the inside, which indeed will cause changes in blood flow. This is a good thing in the long run because the AVM itself is useless, and ideally you want that thing to be free of any blood flow at all. At the same time, your body is adjusting to a new homeostasis re: neurocirculation, but will settle out. I would try to avoid CAT scans because of the radiation - not sure what type of scan you meant. Unless your doc is looking for something specific, a CAT scan just for peace of mind may not be a good idea because of the long run increase in cancer risk that it can pose (tho they are better than they used to be). MRIs are always fine, but a lot of docs & hospitals go with CAT scans because they’re quicker and cheaper. God bless.