Do AVM's spread?

General
1

I was wondering if AVM's spread? How would they spread if they are malformations of the veins and arteries? I am just begining this journey.

2

Good lord, I don't know, but I hope not - maybe a good question for one of your doctors.

3

I don't think they can "spread". They certainly can develop in other areas, so if you have one, you might have another one somewhere else. Some have reported theirs "grew back" or developed in the same spot again.

Our neurosurgeon told us AVMs of the brain in adults, once removed are gone. Brain AVMs in younger people and children, can come back, so they recommend children be retested after 10-15 yrs.

Non-brain AVMs can come back more frequently. There are quite a few members here who have had their AVMs return or new ones show up.

Hope this helps.
Ron, KS

4

Thanks for your replies. I don't have a doctor yet that knows anything about them. I have been refered to a doctor in another province. I have been waiting for this referal for six months. My avm is in my tongue and I just had another mri to check my brain. My doctor here told me that I could have a bleed or there was a chance that it could rupture, I was told that it was a ticking time bomb. It is very stressfull waiting and not even having a doctor close to you that knows anything about them. I thought I read some one's blog that said someone's had spread to different parts of the body, maybe i was dreaming.

5

It is stressful to wait for appts. It might help you to know that you've likely had this AVM since birth, so you have lived with it for some number of years.

I might be mistaken, but I don't recall anyone here posting that they had an AVM in the brain AND in some other part of their body.

Ron, KS

6

Wow, some doctors can be so insensitive! Telling you that you have a "ticking time bomb" and then sending you on your way, unbelievable. I do hope you are able to see the specialist soon. My AVM was in my brain and it is completely gone. I do know that if any portion of the AVM is left after treatment, it can redevelop. But like Ron said, I've not heard of them spreading to other areas. Is it possible to find another doctor that may be able to see you sooner? Even though you have a referral can you still look for another doctor on your own?

7

Hi Patricia...After having radiation and told my AVM was no longer in my brain, my neuro doc told me it wouldn't come back. Stay strong and positive!

8

My surgeon said once they are gone, they are gone. Best wishes!

9

My understanding is that once an AVM is removed completely it will not return.
I do know that active AVMs can grow or shrink (and very occasionally shrink and disappear) I have an active AVM which shows signs of calcification which can cause shrinkage. I will have my 1st annual CTA next week to see if mine is growing, shrinking, or staying the same. For all you pray-ers out there please join me in praying that it is shrinking.

10

Thanks Karen, prayers are with you :)

11

Thanks Mike :)

12

Thanks Louisa :)

13

Hi Trish,
I live in Canada and we have to be refered to a doctor. After waiting this long to see him, I still don't know how much experience he has with avm's. A couple of women in this group recomended me to a doctor in the United States but my doctor wouldn't send me there. Hopefully if this doctor dosen't have the expereince he will refer me down there. Both of these women have had surgery down there and are very happy. Thanks for your reply. I feel more at ease with people's responses that avm's don't spread. Now I just have to deal with the one I have.

14

Thanks Ron, I feel more at ease. :)

15

Thanks Ninibeth :)

16

I guess they don't by everyone's responses :)

17

I have a check up MRI in Feb and i was told that once an AVM is removed in adults its gone forever...but can return in younger people such as children...seeing as im 31 she was confident there shouldnt be any issues....BUT i still anxiously wait....God bless & hope all goes well...never heard of them spreading BUT i cant deny that has been a fear for me that im waiting on asking my neuro in late Feb......

18

Thanks, Good luck Adrian. prayers for you :)

19

Thanks angelaok :)