SO MY DR WANTS ME TO DO RADIATION IDK WHAT TO EXSPECT OR HOW TO FEEL ABOUT THIS CAN ANYONE HELP WITH HOW AN WHAT IT IS EXACTLY IM SCARED AN A LIL FREACKING OUT
Join this group, Tricia: http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother
There is lots of information there.
Tricia...I only had Proton Beam Radiation at Mass General Hospital...there are other kinds of radiation. So all I can say is that I had no problem have the Proton Beam Radiation.
good to know thanx louisa
Hi Tricia I have had Gamma Knife done (sadly) twice and Im "lucky" enough to be getting a third one in November maybe earlier. It is scary the putting of the frame on the waiting all day the angio. Then the waiting for up to 3 yrs to see if it worked. Even though its all a very scary and unknown road, for me it was worth it to get rid of these AVM's. Best of luck to you and just take it one day at a time!!!
Tricia....they have a Proton Beam Radiation Center in Loma Linda in California. Check their center out.
Tricia,
I had cyberknife in July 2010. I hear good things about gamma knife too. No pain, just lost a patch of hair. I had some memory loss which has resolved. My AVM was gone at 6 months post radiation. I highly recommend doing it. It was painless and so easy. My only warning, I had a very rare side effect of brain swelling a few months over a year post radiation. I was complacent and forgot the warning signs my doctors told me about. My husband also thought I was past the time of concern. I slipped through the crack and did not get another follow up MRI at the right time (should be at least every 6 months for a couple of years). I also ignored the signs of the brain swelling…I was confused and not thinking straight after all. I would definitely do radiation again. It was a great option. Just be sure to get frequent follow up scans and watch out for side effects. If you have family, friends have them educated about this so they can watch out for you. Despite the serious loss of function I have due to the late treated side effect, the cyberknife was so worth it. Btw, I LOVE my radiation doctor, Steven Damore, out at Saddleback Memorial and Orange Coast in Fountain Valley. The falling through the crack was just a slip up between my neurosurgeon (Dr. Duma of Hoag…also wonderful), my radiologist and mostly me. If I remember right, I rescheduled my follow up scan and then did it again. Not the doctors fault! Radiation sounds way scarier than it was. Go for it! God bless you!
Kathy
BTW, I am close to you…just north of Lake Elsinore. So if you need to talk person to person, friend me and we can set this up. 
nice to hear that andrea at least it worked hate angios ugh
wow good info an crazy for u im most cared of if i have side effects i do have a 2 year old an scares me to death when i dont feel good or something goes wrong when im here alone with her than x kathy for shareing ur story
i just moved to menifee still close do u have a fb if so find me Patricia Gene Cowser would love to keep talking to you as i go thro with this treatment thanx tricia
I've had 3 Gamma Knife radiation treatments (and only had to have an angio with the first, not the 2nd & 3rd). My 3rd one was in June 2012. They let me see the MRI scans from June 2011 next to June 2012 & it already showed that the AVM was shrinking.
I've also had a craniotomy for my aneurysms, and I'd MUCH rather have another GK than another crani.