Thanks for sharing the link. I read it last night. I wish there were a more recent version with more current research. It's interesting that even docs don't agree on regrowth vs. recurrence, etc.
This is the link that I discovered when it looked as if my son had a recurrence. (He did). We were told that the surgery was a "cure". We were also told that emboliations are not premament, and that Gamma Knife treatment can miss, so surgery is the only way to ensure that the AVM is gone. The surgeon forgot to mention that the things can grow back! When we were talking after the angio came back positive, then it came out that, yes, AVM can grow back, no one understands why, or when. Some docs seem to think that it is because of parts left behind, others that they are new growth.
Hi Tori…you were treated in 2006 how come they did another angio in 2010? Where you having problems or something? I’m pretty sure once I’m told I’m cured my dr wont order any more test and that makes me nervous b/c I dont want to have it regrow and end up with a bled or worse. Thanks for sharing
Tori said:
Julia,
My spinal cord AVM was obliterated in 2006 by embo. Six months later an angio showed it was still all obliterated. However, my latest angio done on 9/20/2010 showed the AVM has grown back.
I learned that we can’t always trust test results. I had the same angiograms read by different doctors and the reports were vastly different. This was done by two of the “best” University hospitals in the country. After my last angio (10 yrs ago) one report said no change, the other said completely obliterated. Who to believe?? I chose to live my life and let whatever happens happen. I have had so much work done on my brain now and have been lucky. I believe that if I keep letting doctors invade my brain sooner or later I will pay the price.