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AVM Survivors Network

POST Cyber Knife Radiation


#1

Hello All,

Finished my 3 days treatment of cyber knife radiation. I did the treatments June 1st 2016 - June 3rd 2016. Each treatment lasting about 30 min. You lay on the table with the plastic mesh mask and the robot comes out from behind you and hits the area of the brain/AVM at all different angles.

I will remain on the steroid until June 21st. I have begun the tapering off of the steroid. The main purpose of it was to reduce brain swelling. Still on my Keppra seizure meds as well.

Here are my current side effects:
Still don't feel 100% but it could be worse. I have some headaches and a "pressure" like feeling around my head. I have big problems right now with extreme ear ringing and it almost always sounds like its raining outside even when its not (I know this has something to do with hearing my blood). I experience some vertigo like symptoms. During the treatments I was falling asleep hours afterwards and staying in a deep sleep, just knocked out. My appetite actually went down despite the steroids. During the treatments I was also smelling a burning metal type of smell. I still feel light headed at times and slightly disoriented. Almost like I can't focus. Hoping all off these side effects go away over the next few weeks.

Nothing to do now but wait for a year for an MRI to see how much has closed off, but they said they probably wont see obliteration until around 18 months after radiation.


#2

Hope the best for you. Just stay strong and happy. Best ways to keep going are just telling friends and family funny stories about therapies surgeries and funny moments in the hospital. I have a lot of funny stories about my time in the hospital and therapies. Best of luck to you.


#3


#4

Thank you very much!


#5

Wondering how you are doing now, June 21 or so? You are a real trooper!


#6

Eileen,

Doing better. Sleeping is getting better. The noises in my ears have gotten better as well. I have started to get patches of hair loss though on the right side above my ear where the cyberkinfe radiation was. Not sure how much is going to continue to come out. It is underneath so it is able to be covered right now but it is becoming a bald spot. Hopinh that its not the whole side or anything.
Also just took my last steroid yesterday so I am done with those which I am happy about.

Thank you for asking!! :)


#7

Glad you have had some improvement. I have a DAVF. Not closed after (2) embolizations & (1)Gamma Knife procedure. Will have to wait (2) years to see if the fistulas at the base are closed. I hate to have to wait the (2) years. As you know the Gamma Knife takes a long time to work. I’m on Keppra & hate the way it makes me feel. What hospital did you have your procedure? Would love to talk with you.
I can give you my email.


#8

Very true, thank you John!


#9

Hey, I went through the same thing. Some people bounce back from cyber knife immediately, but my head felt like a balloon for overy a week. The vertigo may be from the dex, I know it made me feel like that when I went back on them a year after my radiosurgery. Anyway, hang in there, you’re not alone!


#10

Thank you Mat, and good point it could be from the dex. Hope all is well!