Has any one actually had their AVM permanently obliterated

I was told that AVMs are “managed and not cured” and I was just wondering if there is anybody out there who has actually had their AVM totally obliterated, never came back. I am feeling a little disheartened today. I just got the results back from a CTA. I had a 5 hour embolization and 5 hour surgery on an AVM on my ear and scalp almost 2 years ago. At the time the surgeon was optimistic that he had gotten it all but now I find the AVM is back (or was never really gone) and is in front, around and behind what’s left of my ear (I lost the top half of my ear and all the tissue on my scalp around my ear and had a skin graft.) Now the doctor wants me to have another embolization with a new substance called ‘Onyx’ He said my skin will be burned and scab and have to heal and the hair in back of my head will fall out so I’m not really chomping at the bit to do this anytime soon. I’m just curious if anybody has actually had their AVM never come back. Kimberly

YES, I think. We’ve not had a followup scan since the final microsurgery removed the last of the AVM. The DR showed us scans at the end and said “it’s gone”.

I’ve not read that they can grow back or redevelop, although I think people here might have stated that. (not saying either way, just my experience).

Her Drs said nothing about having followup scans at 2 or 5 or 10 yrs to recheck. Guess I should call or write them.

Best wishes,
ron, ks

I believe that each person has to make their own decision, based on the risk of whatever treatment you face versus the risk of doing nothing. The only right answer is the one you chose.

Ron, KS said:

YES, I think. We’ve not had a followup scan since the final microsurgery removed the last of the AVM. The DR showed us scans at the end and said “it’s gone”.

I’ve not read that they can grow back or redevelop, although I think people here might have stated that. (not saying either way, just my experience).

Her Drs said nothing about having followup scans at 2 or 5 or 10 yrs to recheck. Guess I should call or write them.

Best wishes,
ron, ks

I believe that each person has to make their own decision, based on the risk of whatever treatment you face versus the risk of doing nothing. The only right answer is the one you chose.

Where and which doctor did the micro-surgery? Where was the AVM located? I’m glad you had such good results. My surgeon told me if even one cell of an AVM is left it will grow back. Kimberly

Kimberly Buehrer said:

Ron, KS said:
YES, I think. We’ve not had a followup scan since the final microsurgery removed the last of the AVM. The DR showed us scans at the end and said “it’s gone”.

I’ve not read that they can grow back or redevelop, although I think people here might have stated that. (not saying either way, just my experience).

Her Drs said nothing about having followup scans at 2 or 5 or 10 yrs to recheck. Guess I should call or write them.

Best wishes,
ron, ks

I believe that each person has to make their own decision, based on the risk of whatever treatment you face versus the risk of doing nothing. The only right answer is the one you chose.

Dr. Gary Steinberg at Stanford did the surgery.

AVM was large, covering almost all of the left half of her brain. One Proton Beam radiation first, which didn’t shrink the AVM in 2 yrs. First Embo reduced it by about 20%, second by 40%, third on about 20-30% (if I recall correctly). She might have a 4th, would have to look at the book. Then a followup PB radiation.

Reviewing scans about a year later, he said come on out and he’d remove the last of it. He nor any of the other DRs we saw said anything about growing back. Now I agree that if any AVM is left, the weak vessel walls can expand or burst. Maybe he’s calling that “growing”.

Ron

I had a craniotomy to remove my AVM a little over 4 years ago. I went in for fairly regular MRIs for the first 6 months following the surgery and an occasional follow-up MRI until about 2 years ago. At that point, there was no sign of any new development and the neurosurgeon said he had no reason to beleive that it would ever come back. I could understand certain treatments (i.e. embolization, gamma knife, etc.) as having the potential for redevelopment because the vascular tissue is still there. Think of it as a fruit treep. You pick the fruit off of the branch, and unless you remove the branch or completely cut it’s supply of nutrients, the branch can grow more fruit.