I had the gamma knife at age 10 following my first AVM brain bleed, then again at age 16 when they “found areas that were missed”: two areas each 0.5 mm by 2 mm. However, I just had a second bleed this year and was told that the “AVM grew back during puberty.” Has anyone else had this happen? I was always told that AVMs were just present from birth.
Hi Hermione! Definitely want to check with your docs on that. However, there have been cases reported of that happening although rare. I know that GK is a type of radiation so its possible that they didn’t get all of it. I only say this because I am in the same boat! The initial bleed was in 2000. They got that one then scheduled me for GK to get another. After that, another AVM showed up on an angiogram and bled before they could operate on that one in 2010. That’s 3. Now in 2020 I just went for another 2nd opinion at Duke medical center. Sure enough, they found ANOTHER AVM. This time they found it before it bled but my last medical center wrote me off. So I’ve got another Gamma Knife procedure coming as soon as we can get it scheduled. But, this I guess brings up the question, do they grow back or is it just that they missed it the first time. I don’t know, I just don’t want those things in my head! Blessings as you prepare!
BTW, I like the moniker, as my daughters love Harry Potter. Blessings as you continue!
I have done a lot of reading on these, I mean a lot & yes - it is possible. I read one on here where an AVM grew back after a craniotomy
Frightening stuff to me, but I face is it “head on” lol
Just try to get yourself into the best hands possible is all I can say.
Sorry to hear & definitely best of luck
Thank you for your response! I am under the impression that this is still part of the original AVM, or at least that it would have grown back from the residue.
Are your AVMs all located in the same area? I’m hoping an upcoming embolization surgery will just block off the feed to the AVM altogether so that it will starve to death, essentially. (Except that they would have to block off the vein rather than the artery, due to the nature of my blood vessels.)
Thanks! My name is actually Julia, but I couldn’t resist using this name.
The AVM are all in the brain, but the first two were in the thalamus I think. I figured on the moniker. Not to be morbid but the way I figure, I gotta die of something right? Praying you will be safe and healed!
I don’t know if this is what you mean, but I too had an AVM that part of it was missed with radiation. It recruited 2 more arteries. Had to have another embolization and radiation treatment. Luckily no bleed but many seizures. It was found in 2012. Still waiting for it to go away.
Hey - I had an AVM regrow after my craniotomy. I was also told that it was because I was young and that my brain was still developing when they took it out (I was 16).
Yes, that sounds like my situation. My 2015 MRI showed no sign of the areas, but having bled again this year, I know that something grew back, somehow! They are looking to do embolization on the vein feeding away from it, rather than the very narrow and crooked artery that feeds to it.
That is exactly what they just told me. Hopefully after this treatment, I will be okay?!? I hope I am too old now for it to grow back again.
Same! I am 19 years old now and waiting for treatment again. Are you having surgery or Gamma Knife again?
I asked and my surgeons told me that the chances of recurrence are rare. They said they’re analogous to the margins when a malignant tumor is removed. They can very well miss something with GK and surgery.
My surgery was in 1993 after my asymptomatic AVM was found after a head-on collision. After recovering from the head, face, and brain trauma I had an MRI which found nothing abnormal. For nothing more the peace of mind I wanted a second opinion. I live near Barrow Neurological Institute in Phoenix, AZ. They found the AVM the first doctors missed completely.
It’s been 27 years and I’m still here with no recurrence, so far
Sounds similar to what happened to me, but mine never went away completely. I had a craniotomy, embolization, followed by 2 GK. 4 years after the first Gk, the veins recannalized around the embolization. Hence “regrowing” and a 2nd round of GK. Dr. Steiner deemed it a failure. So here i am living with a 7mm nidus and no one will touch me again with the GK for fear of treating the same area and causing radiation necrosis.
Hi there. So sorry to hear this. My understanding (from what I’ve read in this site) is that the vast majority of AVMs are present at birth as you say. Unless they are completely obliterated by treatment it is possible for them to grow back by recruiting further blood vessels. Maybe this is what happened to you.
Oh geez!! Please don’t scare me!! I’ve had an embolization and craniotomy and regrowth is my greatest fear!! Every yearly angio I brace myself for bad news…
The fact that this has happened to yall make me a bit nervous.
Regrowth almost doesn’t make sense - yet, it does
It doesn’t “seem” like we can grow more veins or arterial pathways - but, they somehow can grow
I been doing a lot of reading on this topic also. Haven’t heard of “regrowth” post embolization - only rare cases of recanalization
But, this stuff is all up for debate - all of these vary so much
Just to chime in, I had AVM rupture in 2000. After coma, rehab, relearning to walk, talk, etc. In 2010 I had another rupture. Had that removed by craniotomy. Thought I was good but went to Duke cause they’re closer. Turns out I have another AVM (that’s 3). Since Duke team found it I’m gonna have Duke fix it but wow, wasn’t expecting that! Ah well.
I had a craniotomy at age 16- in 1973 to remove my AVM and clamp off the blood vessels. Nothing has happened since then except a few migraines. Good luck to. We are all different.
They are leaning towards embolization on the vein rather than on the artery.