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AVM Survivors Network

Hi I'm Donna - new member

I have had two occurrences with my AVM. First was approx. 18 yrs ago, right temporal lobe presented with one grand mal seizure. Right temporal lobectomy resulting in upper left quadrant vision loss in both eyes and some short term memory loss. I was told it was gone but big surprise, it came back December 2017 with a bleed. I had the worst headache of my life for about 6 months. I had the cyber knife procedure in the summer of 2018 and approx. 3 weeks after developed chronic headaches which vary in strength. There is no rhyme or reason to when the pain increases or why it increases… I am just looking into some insight about other members experiences with this and treatments. Thank you!

Welcome Donna! Really sorry to hear about your AVM returning and dealing with this a second time. I had gamma knife back in November 2016 due to a left temporal AVM and bleed. For me the most pain I had was due to increased pressure my head, that was post bleed and during recovery. There were times around the 6 month mark post gamma I experienced head aches. They were predicted as some swelling often shows up about that time post radiation. It gradually faded and didn’t recur for me. May be worth a conversation with your Dr., I know in some cases they become severe enough that steroids are prescribed to reduce the swelling if it is the cause. Take Care, John

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Welcome, Donna. We’re glad that you found us, and we hope that you will be too.

Seenie from ModSupport

… and you’re all from Canada…!

I just thought I’d point out you’re amongst friends and (nearly) neighbours, Canada being a bit bigger than chez moi.

Thank you for replying everyone! I should have joined a group like this a long time ago. The drs believe I have nerve pain as a side effect of the radio surgery and I am currently taking Gabapentin to get some relief. Has anyone else had this type of experience and been prescribe this drug? I am just curious of other options. I am trying acupuncture too!