FINALLY things are going to happen. Not sure if I am excited but I know I am scared to death and then some. I am going in next week Wednesday November 6th. Has anyone on here had good or bad experience with it? Sick? Tired? Hair loss? Etc… I want any and all info I can get. Please. I keyed into docs words like swelling and craniotomy and steroids. The rest is a blur. Any advice n info appreciated.
Tana, is the plan to have a single round of radiosurgery? Sometimes, with a large avm, it takes more than one round to do the job.
I had the radiation with Cyber knife a year and a half ago. The only thing I have had is sometimes my left arm & leg feel like numb/tingly feeling. Doctor told me if it last more then an hour to call. Still do get the occasional headache from hell!!!
Well I guess thats not too bad. The headaches are no fun! I have had a brain freeze/ice cream headache since jan 26th with a few days of reeeeally bad ones. Not fun at all! Thank you and good luck! So sorry too its no fun!
Dancermom…no he said a few treatments. It’s 7cm on left lobe. Directly on motor strip.
I just had Gamma Knife surgery last Wednesday! Not going to lie… Scary as hell & a very long day 14 hours! Radiation treatment has made me very nauseous & I have left side weakness which I was possibly expecting due to location of AVM & earlier symptoms. The first 3 days post recovery were the hardest, but I’m getting stronger each day now & today I don’t have a headache at all!!
I know the surgery was a success, I can just feel it! This option to me was the best out of anything else!
The Gamma Knife surgery, I don’t remember it all. I slept through the almost the whole procedure! I wasn’t in any severe pain until day 3.
Best of luck! It will be good for you too! I know it’s a big decision.
I have had two radiation (LINAC) treatments. The first one the had to put the frame on. That was pretty bad. I had to keep it on all day and it hurt pretty much the whole time. I threw up 3 times. As soon as they got it off I was good to go. The second go around the just made a mask to make sure everything was lined up like the first time. It went well until a week later when I had a seizure. Then the very next week my hair fell out in the left front area in about a 4-5 inch diameter. I have long hair so I can pretty much keep it covered. It had fallen out in the back the first go around but I didn't know it. I just thought my hair was parting kinda funny. There is about 6 months worth of curly regrowth back there. At least I know my hair will come back. Yeaaaaahh!
Hi Tana, some people have bad experience and some have relatelively straighforward with this treatment so it really depends on various factors..every case is different so the side effects you may get(if any!) may differ as well...I had GK 2 years ago at this stage and I have to say that last one year was very difficult..I had a lot of edema, my rightside got very weak due to edema as well, was put on a very high dose of steroids etc etc...but over the period everything settled down. Last few MRI's are showing that there is no blood flow from AVM which means its nearly closed, and the recommendation is to get it confirmed via angio but I'm not in hurry rightnow.. I'm feeling great as compare to this time last yr. The key is to have patience and just go with the flow if you have made the decision to have this treatment because that is the most difficult one...
I wish you all the very best