Hello All I have an important question to ask about brain swelling after cyber knife radiation. I am now 6 months post cyber knife radiation and my radiologist said this is called an acute swelling phase when the brain swelling comes back 4-6 months after treatment.
Well I am now 6 months after treatment and I just got out of the neuro ICU due to significant brain swelling.
I have not been able to get off the steroids because the brain swelling keeps coming back from the cyber knife even after all this time.
How long did it take for your brain swelling to go down after cyber knife for good and not come back so you could stay off the steroids? Thanks.
Hi, I’m 4 weeks post gamma, no experience to share. I want to let you know my thoughts are with you and you are in my prayers. I’ve read all your posts, you certainly are an example of strength and courage in this odyssey of AVMs. Stay strong!
I was lucky, I didn’t have swelling of brain or any side effects from my radiation treatment onmy avm. My doctor was sure after a year all side effects, if any would diminish.
Oh no! So sorry to hear all this… How are you feeling now?? Neuro ICU is never a place you wanna be, trust me I know… I’ve read a lot around this forum and been two hundreds of appointments and never heard of something called an acute swelling phase… I do hope that they did an MRI and cat scan for you while you were there… Then you will have updated ones for a second opinion if you still want one from Jefferson or anywhere else… And I have to tell you- it just may be a better idea than once originally thought. Stay strong girl, I’m thinkin about ya!
Jeannine
Thanks girl. Yeah just got out of the ICU the other day. The sad part is the doctors dont know if i had another seizure or a mini stroke… I just want answers. Still recovering at home
I had no brain swelling after my Gamma Knife procedure in Sept, 2016. I kept expecting that something would happen, so I stressed out from not knowing what to expect. I felt like this AVM was holding me hostage. Bit by bit, I learned to relax (a little). You are going to get stronger and braver over time. You’ve been a trooper so far. You’ve got a lot of fight left in you, so lets fight together! Keeping you in my Prayers.
Sharon D
Hi - I had swelling after both GK surgeries around the timeframe you describe. My doctors told me it was fairly common and they gave me a VERY strong steroid (I was put on short-term disability for two weeks). The edema finally subsided but the steroid experience was really unpleasant. Hang in there and maybe get another opinion or try a stronger steroid? Have hope! After an 8 year journey I just found out my AVM has been obliterated. It will happen!
Thank you for sharing! I appreciate the info. Congrats on obliteration! If you don’t mind me asking, what was the size and location of your AVM? Thank you!
Honestly, I’d have to go back to my records for the size but it was just under the cut-off for GK. It was a deep one - located near Broca’s region so I wasn’t a candidate for open cranial (risk of severely impaired motor speech abilities wasnt one I was willing to take). Something to consider - I understand that where the AVM is has a lot to do with auras etc…for example my auras presented themselves as an inability to get my words out. That’s when I knew a seizure might be coming on. (I was prescribed Ativan to take if I had an aura.) you may want to consider where your AVM is - does it have anything to do with your resistance to the steroids? Sounds strange but worth considering.
One other thought that may be of some comfort - I noticed that I had the most issues several months after my cyber knife treatments - swelling, auras etc… and honestly I think it’s because that’s when the treatment was working - something was “going on” and changing. I was pretty diligent about having MRIs every 6 mos and that’s when they did see change. So maybe be encouraged that something in there is happening for the good!!! Ps - I had all my treatment done at UVA - Dr Sheehan. I live in NYC and also consulted with team at Columbia and dr Soloman but just had a much better fit at UVA.
I know the radiation really starts to do its work months after you get treatment, I just didnt think 6-7 months after treatment. Seems so long after, but I could be wrong. Hopefully thats all it is and that it will pass soon