My AVM came back and I don’t know what to do…this is my story

Sandra, I hope the Avastin treatments do the trick for you. This part has me concerned as well, since my daughter has been exposed to quite a bit of radiation with the 15 catscans she's received in the past 2 years. I suspect Radiation Necrosis that doctors knew little about, and now they're learning more about the frequency. I have fought insurance battles, too, so I know how frustrating they are. Keep at it. They count on you giving up. Don't let up on them. Keep hammering away!!

Sandra. I would love to hear how the treatment with avastin worked for you. I also suffer from radionecrosis. I was treated with radiation 2x for avm. I have been treated with hbot a long time ago and recently steroids and trental for the edema. Now the docs are considering avastin for me. Just wondering did it help, did you have adverse effects?

Hi sandra, I am so sorry to learn that your avm has returned, it puts my neurosurgeons theory right out the window. Like you i was told me when its gone, its gone but over the last few weeks since joining this site unfortunately I have learnt that this is not always the case. You have been through so much already and Life can be so cruel. Right now you are probably still in shock but when things settle down you will need to make some important decisions. It is everyone’s worst nightmare but for you it has becone reality. However, you succeeded once and you can do it again! This time though it will be an easier journey because half of the battle seems to be actually understanding what a avm is becuse most of us disgosed dont have the first idea what we are dealing with. Keep strong, you’ve got the fight in you, you just might not know it yet! :slight_smile: