I hate to hear that. It is frustrating.
I read a lot of literature on radiation surgery, and it seems like the medical community doesn’t really have any sure way to predict if radiation damage will take place when used.
But it’s a nasty side effect.
Sorry i forgot our conversation. See last time I heard from you was in December and you were saying that the doctor was figuring out what to do about the necrosis.
So wow you just had the removal, ok. Glad to hear from you !
so still some left sided weakness. You really went through a big thing. Do you feel better? Worse ? Hope you had some time to take for yourself to just rest.
Yes, I went thru Cyberknife radiation treatment in June of 2012, I began having some left sided weakness one year later. I was told in Feb 2014 that my AVM was 80% occluded & then when I went for follow up in Sept. 2014 I was told it was only 50% occluded. After I changed doctors & finally had a follow up angiogram I was told my AVM was still about 3 cm, which I’d the size it was before radiation. I was then told that surgery to remove the AVM & hard necrosed tissue, I had my surgery on Jan 28th & am now finally AVM free! I still have some left sided weakness but am undergoing PT & OT and am hopeful that the weakness will improve. I hope the Avastin works for you & I’m glad you were told your AVM was obliterated with the radiation.
I agree Josh, it is a nasty side effect but you kind of weigh your options before the treatment...I had my GK in Oct 2011, had edema but got treated with Steroids, on and off I took steroids for 6-9 months and have gone through all side effects. I had to follow-up after 3 years which i still have to do but my MRI a year ago showed no blood flow through AVM so assume that means its 'GONE'.
Good luck with your Avastin treatment, I'll be watching the updates.
I have a general question though for people who has suffered from radiation necrosis - is it something which happens soon after the treatment or shows up after years?
6 months to 18 months. I started tripping over.