Hi everyone, im new here. I just took a chance searching for a brain AVM support group considering no one else really understands how you could be feeling. I received my last stereotactic radio survey in 2018 and I’ve been suffering from side effects since then, sadly. My doctors refer to my side effects as Necrosis. Is anyone else dealing with limitations or any difficulties after discovering the AVM or treatment?
Welcome Devri. Sorry to hear about your side effects. I had gamma knife but was fortunate and only required one dose. I can’t really add much personal experience, but we do have some members that have/are experiencing similar so hopefully we will her from them in the next day or two. I didn’t have further deficits due to treatment, but do have some from the bleed I had.
One thing that is consistent is that the brain seems to never stop healing, and the research supports this so much. So many people here put the real life experiences to the research. We often say forward is forward, albeit we would all like to be fast forward, patience is important. John