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AVM Survivors Network

Brain Swelling and Vision Problems


#1

Hello all. Finally got a second opinion at University of Penn and very pleased. Not great news but pleased with the course of action and information. She showed me I have significant brain swelling from the cyber knife radiation even though it was 7 months ago. She’s a bit worried about the amount of swelling so she’s keeping me on the steroids and increasing my seizure meds. The swelling is also is from trying to go off the steroids and my body not being ready. She said it’s abnormal to have the amount of swelling I have this far out but that it will eventually go down. Problem is, when I went into the icu earlier this month for the swelling episode, she said it could have caused permanent damage to my vision because it’s still a bit blurry. She couldn’t say if the vision will fully come back once the swelling goes down because she can’t see if there was permanent damage. They just know there was no bleeding.

Has anyone else experienced significant brain swelling 7 months or later after radiation and had any vision problems permanently because of it? I’m hoping once the swelling goes down my vision will come back but we just don’t know. She’s expecting by March to do some more scans to see if I can get off the steroids and she’s hoping the swelling will be down by then, or should be at least
Sincerely,
Alyssa Coffey


#2

I never had noticeable brain swelling symptoms from the radiation but my vision actually improved after the radiation. I went from 20/60 to 20/15 in the year after radiation treatment, which my doctor thinks was due to the reduced pressure of the shrinking avm on my optic nerve. I’ll pray that your vision improves in the coming months.


#3

Thank you for the kind words!