Hi there fellow fighters :) Hope everyone is having a great day! I was curious to ask those who have more experience than I about the steroids they gave me after my cyberknife treatment last week. Today is my last day of the steroids & I understand they were given to me to reduce swelling in the brain. So far my recovery process has been good, no major complications or deficits. I'm a bit nervous that now I'm not taking the steroids that I will be more likely to have swelling. Has anyone experienced this? I have a grade 3 AVM in my occipital/parietal lobe & had a 22 grey dose to the focal point less than a week ago. I am managing the headaches with medication & sleeping a lot. Can anyone share with me? Thanks in advance!

Im sorry I don’t have an answer but pray you continue to heal without any swelling or problems
I have not been treated yet and didnt even think about having to take steroids I know they can be a good thing and the shortest duration is most likely best
I am just trying to read any and all comments to help educate myself and get some insight and I am sure some one on this sight will have answers for you soon
I can only imagine how nervous you must feel and can only add to speak and think positive

Hi Houston, thanks for your support. Do you have an AVM? I’m happy to share any info with you if I can help. I was just diagnosed 3 months ago, it’s been a roller coaster. Stay strong!

I had a grade 4 AVM in my left parietal, motor cortex, and occipital lobe treated with 16Gy of gamma knife radiation in sept 2009. It’s thankfully mostly obliterated now. There’s 2 types of radiation injury - acute and late stage. Right after gamma knife, I had minor and expected acute stage symptoms - nausea, hair fell out, increased headache. That passed after about a month. After 18 months I ended up with late stage issues - major brain swelling that became radiation necrosis. The good side of that was it meant the radiation was extremely effective in obliterating my AVM. Bad side is that I did lose some function in normal brain tissue that was collateral damage. Hyperbaric oxygen therapy helped a lot, and I’ve mostly figured out how to get around the other deficits to live independently with help from my service dog, but I still can’t work. I don’t regret having gamma knife because the AVM is now stable scar tissue and I don’t have to worry about another bleed. Hope all continues to go well for you and that your AVM will shrink up and die without complications! Best of luck :slight_smile:

Hi jjsbabies
I’m not going to lie, I don’t really like commenting on discussions with my experiences as I am aware my symptoms and outcomes are extremeley uncommon (I think I am the only AVM patient in the UK who’s outcome is like mine :()… I don’t want it to seem like I think I’m special or anything, I know everyone on here has gone through some really tough times! I’d be happy to tell you more if you want just don’t want to scare anybody!
All I will say is that sometimes the most difficult things are most worth doing :slight_smile: stay strong and keep smiling :slight_smile: xxx

Hi, I had to 2 treatments of cyberknife 4 years apart. I too was given steroids to address swelling. I was told that they give steroids to address any possible swelling. The doctors went on to say that each person has a different experience as far as the level of swelling. The Doctors went on to say that they don't like to keep patients on steroids for any great length of time but if they need to use more they would. Thankfully I didnt experience any abnormal levels of swelling and was only on steroids for about a week. The only real advice I can give you is to to take things slow. Please do not rush anything. Fatigue has been a factor for me even years later, I do not resist it. I wish you well.