Do they grow back?

Has anyone here had an AVM grow back?

Hi Jamie:
I have never had a craniotomy or a GK. Just embolizations, but I will be having my third embolizations next month. I asked the doctor about why I am having to have more embolizations and he said the AVM is malignant, meaning it will continue to grow and the glue used will be absorbed by the body, requiring additional embolizations. He said I am not a candidate for a craniotomy or GK due to my age. (77) The part I always dread more than the embolizations is the angiograms. I have a couple of herniated disc and lying on my back for 8 to 10 hours nearly kills me. At least during the embolizations the put me out, but when I wake up it really hits me. The last time I had the embolization I was kept in the hospital overnight and given a contineous drip of antibiotics. That was because of the recent prosthetic knee.

What kind of ‘glue’ did they use? And 77 is still young in todays standards!

Dewey M Reynolds said:

Hi Jamie:
I have never had a craniotomy or a GK. Just embolizations, but I will be having my third embolizations next month. I asked the doctor about why I am having to have more embolizations and he said the AVM is malignant, meaning it will continue to grow and the glue used will be absorbed by the body, requiring additional embolizations. He said I am not a candidate for a craniotomy or GK due to my age. (77) The part I always dread more than the embolizations is the angiograms. I have a couple of herniated disc and lying on my back for 8 to 10 hours nearly kills me. At least during the embolizations the put me out, but when I wake up it really hits me. The last time I had the embolization I was kept in the hospital overnight and given a contineous drip of antibiotics. That was because of the recent prosthetic knee.

Hi Jamie:

I have an AVm in my lower back on the left side. My Doctors call what they call ‘rare’ sight to see. To keep it simple they have done an anigogram to stop the major bleeder. I hate it but it helped end my pain. Then more pain showed up. Come to find out more small holes in my atery was found. They embolized them with some kind of injections to shrink scar tissue. That’s what I was told, plus they glued the holes afterwards. They told me the glue they used was some kind of surgical glue.

I still have an active AVM, but the last MRI I had my Doctor told me, if it’s touched makes it worse. So at the moment I’m on stand by. If it gets worse then we might have to do injections again. Which I dread cause I hate needles and such. I’m 29 years old and at the moment, after the holidays. We’re going to do an MRI as a status update and see if it’s still active or not.

But as growing back. Not really growing, just all depends. In my case, I can tear holes in my artery and not even know it unless my symptoms show up again. So I have to be kind of cautious when I do sports and such now.

For people with HHT I know that AVMs can appear where there were none.

Yep they can grow back. It happens…maybe not often for the brainers, but definately for us extremity kids.

The thing to remember is that if ANY AVM is left, then it can become active again and this is what we refer to when we say it “grows back.” Quite literally it was never all gone to begin with. They just thought it was, or thought they got enough.

Many time people who have surgeries with only partial removal will experience the AVM coming back with a vengenace. This is because these types of lesions thrive on trauma and so the surgery itself “upsets” the beast and can be the trigger for more growth. Many times when surgeons who think they can treat these, don’t do it well, you end up with a bigger mess than you started. Add in the amount of scar tissue created by failed surgery, pathways that are less direct, and new angiogenesis creating more and more pathways…well you see why it’s important that you have a qualified surgeon and someone who is “cowboy” enough to really go in and do the damage needed to ensure they get it all!

No fun…

Yes. My husband’s AVM is in his brain and it has returned. It is in the same portion of the brain but coming from a different artery source (it’s now on the exterior of his brain, before it was in the interior).

HI jamie:
I been doing some research, and according to this doesnt growh back but. If anything was left out any tiny piece of the vein it will increase…I had a craniotony done the doctor said that some of the veins was left inside that due to the position of the avm was imposible to removed everything… theres a posibility from them to increased on size… Since I had ready read about it…It was no surprised for me Know im waiting for gamma Knife…Maybe your case will be different…
THank you for sharing…Good luck and take care…

I hope they get all of it the first time! Is the GK used more for the hard to reach places or is it just what the doctor prefers?

I think the gamma knife is used for the residual ‘bits’ after the bulk has been removed. Thats what I was told in my case. Its less invasive too.

Sara has you husband ever been checked for any blood disorder like Factor V Leiden . I was told that this disorder helped create my avm

Sara said:

Yes. My husband’s AVM is in his brain and it has returned. It is in the same portion of the brain but coming from a different artery source (it’s now on the exterior of his brain, before it was in the interior).

I had a brain AVM in the right frontal lobe. The dr. said as long as they removed everything, it cannot grow back. The angiogram did not show any of the AVM left, but he said you can’t really tell until a year after the surgery. I have to have another angiogram to make sure that the first was correct cause there is a chance that the picture is not as clear when its done soon after surgery. So I am assuming if there is anything left there is a chance it can be dangerous if not they wouldnt have me go back for another angiogram

I am scared to death of this happening to me, I had gamma in march of 08, the mri in feb of 09 showed a lot of swelling and they couldn’t tell if it was completely gone or just mostly and to live my life as if it was gone, now i am going back for my 2yr angio in latefeb/early march and i am scared to death that it will have grown back…

Jessica:
I’m in the same boat with my son.His recent MRI showed a possible regrowth.He is having an angiogram on the 25th to be sure but the waiting is hell.I know what it’s like to have the fear hit you so hard you have to tell yourself to breathe or you forget. I hope you get good news but if you don’t have faith that you will get through this too.This website has really helped me see how strong people really are and how amazing they can be.Remember that you are one of those amazing people!

jessica said:

I am scared to death of this happening to me, I had gamma in march of 08, the mri in feb of 09 showed a lot of swelling and they couldn’t tell if it was completely gone or just mostly and to live my life as if it was gone, now i am going back for my 2yr angio in latefeb/early march and i am scared to death that it will have grown back…

Sara, really?! sigh… this terrifies me. My doctors told me if I had my AVM removed that it could never grow back. Did your husband’s doctors tell why it came back?! So sorry to hear this.

Sara said:

Yes. My husband’s AVM is in his brain and it has returned. It is in the same portion of the brain but coming from a different artery source (it’s now on the exterior of his brain, before it was in the interior).

Hi Marianne:
Who told you that if you had your AVM removed that it wouldn’t grow back? I’d like to talk to them about my AVM and see if they can tell me that too.

My doctors told me after each embolizations they had got it all, and then after the third embolization they told me I would have it the rest of my life and to get use to having embolizations. After the third embolization they said I was no longer a good candidate for further embolizations, and scheduled me for the GK which was done last month. Now I will have to have an MRI every two months and after a year another angiogram. At the age of 78 I won’t have to put up with it many more years. I feel sorry and pray for all you that are still young (under 50) and have so many years to put up with it.

Good question. I had Gamma Knife back in 1995. They said that by 1999-2000 it was completely obliterated. But now I have one in my left retina. Could it have rooted and re-grown??? I mean these are congenital. Anyone?

Hello Jamie,

I don’t know if the AVM “re-grew”, but I was diagnosed 3 years after the first was obliterated with another in the exact same area in my brain. I thought I had pneumonia, and my family doctor sent me for an MRI and surprise, another visit to the neurologists for more treatment. I received doubtful responses from the doctors until they looked at the films. Apparently it was larger than the first and I still need to have the Gamma Knife treatment in order to be fully “cured” of this one. I read Dewey Reynolds response to you and pray that mine is not malignant. Time to get more serious about all of this. I hope you’re asking out of curiosity and not necessity. Take care.

I had an anuryesm and an AVM bust at the same time. And had a stroke. Has anyone here had the same thing happen??? I had my surgery back in 86 and still have very bad headaches, they drilled 6 holes in my head and took out the back bone, then put it back together, they also used metal clips on me, I know that they have changed that though. I have had seizures ever since, shaking and headaches…have never met someone who has gone through the same thing, would love to know if it is normal what I go through. plz help!