Has anyone heard of a brain AVM growing back after it has been obliterated or removed?
Erin,
Mine was not removed but had shrunk over 85 percent, they did not tell me that it would grow back but it is growing back, have been silent in this forum due to having lots of problems. When I started over 10 years ago, 4 anuerisms ruptured in my AVM that was bigger than an egg but smaller than a lime, I had steriotactic radiosurgery and it did shrink the 85 or so percent but here I am 10 years later not knowing that other than side effects that I may have to go through this all again. This site may have saved my life!! I asked the same question a couple about 3 months ago and was able to get to a dr, not even a neurologist, which blew my mind that was not going to waste any time finding out if my problems were related to the AVM. They can and do grow back, mine however, is not growing fast and does not have any anuerisms at this time, they are leaving it alone and dealing with the problems it is causing. I am just glad that at this time, it is not life threatening and I have a little time to deal with it better than last time. If my not so good memory serves me correctly, you are the one from St. Louis, right?? I am the one from right upstate from you, in LaGrange, MO.
Take care and keep the faith
Yes. Even tho I had mine removed completely.(Doctor just comfirm today) He did say it might grow back anytime in 3 years. So I hav to do angiogram every year to keep it in check!
That I never realized that. I thought after they were obliterated you were finished. So I guess this will be a lifelong problem.
Don’t you just love it after what you have already been through. I was told the other day bc. mine is so big they would remove small parts at a time. And yes it did ruin my day.
e1
My doctor never mentioned anything about the AVM growing back!
I’ll have to add this one to my questions list for my next appoinment.
I was unsure until now about AVM’s growing back. I guess I’ll have to keep an eye out for sypmtoms of it. My last Dr. visit though, he said it was the last. But mine has been a long time since it was obliterated, do you think that might lessen the odds of one growing back?
Liam,
I had my AVMs clipped and I had an angiogram afterwards which showed no active AVM. I was discharged from my NS probably 15 years ago. No follow up no tests. I’m kind of confused about all these different treatments I’m hearing about, and this regrowth potential. I’m probably going to call my NS to get all this clarified but if anyone could enlighten me on all this please do so.
Erin,
Mine was treated almost 30 years ago by Bragg Proton and I was never told that I would need to monitor it or that there was a chance it could “grow”. i started having problems that we finally were able to pinpoint to the AVM and found that it had grown 1/2 cm by 5/8 cm in the past 5 years.
My current surgeon has told me that even after the embolizations and Gamma knife that it should be checked every year for the rest of my life because the possibility will always be there that it can grow back again.
Good Luck,
I think my last angio was only a few months after my avm was removed. The last test I actualy had on my head was just an MRI. That’s when he said he didn’t see anything and I didn’t need to see him any more. I’m not sure I completely trust that, but am holding on to that hope. Although I had countless tests throughout my childhood and still the avm wasn’t found until it ruptured. ;|
WOW! angios every year after gamma?? My surgeon did not tell me that…I had gamma in march