Does anybody know

Does any body know what thechance of an AVM comeing back is ?

Stacy,

I am living proof that if they do not get it all that they can come back. Mine is growing again and I am 11 years post surgery but at this point we are just watching it, because I refuse to have a crainiotomy.
As for how common it is is, I am not sure. I know that it seems to correlate to changes in your system.
For me, they think it was my pregnancy and the chemical changes in my body during that time.

If this is not something that is happening right now, I would not get concerned about it or it will drive you crazy. Keep your appointments for follow ups and let the Dr’s do most of the worrying for you.
It is possible but dont let it control your life. Keep your chin up and lean on us for support.
Susan

My neurologist told me that once it has been removed it doesn’t come back

I’d say the chances would be low, but there’s no one answer. It all depends on the AVM and how the surgery went, everyone’s would be different.

I had an angiogram 16 months post my craniotomy to make sure there were no signs of it reforming, and there wasn’t. My surgeon said I never had to get another angiogram or see him again after that, so I guess that’s it?

I had the cranitomy done 4-11-09…They did remove the avm but it seems like they reforming again…Mine did came back… I told the doctor that It was hard(family) what we went through with the cranitotomy that I cannot go back to another craniotomy again… I had a embolization but he could not reached the vein because it was in angle that he coukd it ruptured the other veins…he could kill me or vegetable stage…Im having a hard time triyng to accepted that is still there (brain)
He decided (md) to go next step wich is radiation wich im schedule in 12-03-09.

Anabel Meza said:

I had the cranitomy done 4-11-09…Mine avm it was on a hard position he didnd see the other veins or there were to small seems like they reforming again…Mine did came back… I told the doctor that It was hard(family) what we went through with the cranitotomy that I cannot go back to another craniotomy again… I had a embolization but he could not reached the vein because it was in angle that he coukd it ruptured the other veins…he could kill me or vegetable stage…Im having a hard time triyng to accepted that is still there (brain)

He decided (md) to go next step wich is radiation wich im schedule in 12-03-09.

I have been dealing with AVM’s since I was age 7. I’ve had 32 surgeries and I have no IDEA how many AVM’s between them all. I know though that the reason my AVM’s keep growing is because I have an abnormal blood vessel growing through my carotid arteries that carry blood to and from my brain; they can’t completely remove my abnormal blood vessels so they cannot cure me. So long as they remove all of the abnormal blood vessels the scar tissue prevents the AVM’s from returning is what I know about it. I hope all goes well for you, God Bless you and your daily life.

This is one that haunts us. My daughter had her AVM removed a year and a half ago and will have an angiogram done in a year or so to make sure all the baddies are gone. The doc said that in children the AVM can reform. He said it is much less likely in adults. But the one thing that this has taught me is that it doesn’t matter what the chances are… it only matters what happens.
I’m afraid you’re unlikely to get the answer you are looking for, but know that you aren’t alone in your concerns.

Hi Stacy

My doctor did not suggest I do an angiogram, I had a spinal avm and stereotactic radiosurgery a week ago. I believe I will do at least one angiogram within 5 yrs, depending on my symptoms and recovery rate.