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AVM Survivors Network

Facial AVM and Aging


#1

As my husband gets treated and we look hopefully for a future where his growth is in remission, we've wondered about aging and facial AVM's.

It occurred to us we don't remember talking with anyone who could answer these questions. I don't want to think too hard about why that might be (I prefer to hope it's just because they haven't been online or haven't found us yet).

If anyone knows of anyone or if they are lurking on here we're curious about what part aging plays on facial AVM (or even other extremity avm). My husband is going to be 44 next month so he's not at that point in life yet but it's something we are curious about. If you know anything about this topic please don't be afraid to be frank. We want to know.

Thanks!


#2

Steve can address this better than I can, Kimi, but there is theoretically supposed to be a decline in AVM activity post-55, as hormones decline. Angiogenesis would be one of the body processes that would slow down with age, I would think. I hope so, anyway. If you ever ask Dr. Suen about this, let us know what you learn.


#3

We will certainly add it to our list of questions for him!

Now to go research angiogenesis :D


#4

That is something I’ve often wondered, a lot of things do subside with age! Although my facial avm didn’t give me jip till my mid 50’s but had always been there. Think I’ll bury my head in the sand and I do suspect some older avmers are not on the website, like you say. There could be big hope for us all. I’m 57 now so not long to go! Certainly the migraines seem to be improving in frequency and power. Best wishes to all.


#5

Thank you for speaking up! Maybe there is big hope, maybe it is as dancermom says and angiogenesis (the growth of blood vessels) slows down with age. That'd be a great thing!
I guess we were mostly thinking about how much his last procedure was a kick in the rear and seemed to take awhile to recover. We know how different we feel from 10 years ago ago so can't imagine how he'd do with these treatments in another 10, 20, 30 years.


#6

Ok, I have never heard of angiogenesis before (my education is in computers not medicine LOL)

So I've been reading and now I am curious if anyone has heard of using anti-angiogenesis treatments for avm?


#7

Thanks for asking these questions Kimi! I've wondered the EXACT same things--what happens with age to facial AVMs, as well as I stumbled onto the online utube video of doctor promoting the anti-angiogenesis diet to prevent/cure cancers....it was on my list of questions for Dr. Richter back in March, but unfortunately, the more pressing topic of Burkley's AVM expansion and growth dominated the conversation. I also have it on my list again to ask him if we're able to go in May. Please post anything you find out! I'm always hoping something added to or taken away from everyday diet might aid, even if in some small way, the growth and expansion of their facial AVMs! Best of luck for upcoming surgery!


#8

I will definitely share any answers we can get from Dr. Suen! Here's some links to information that I've found so far. Butterfly AVM Charity had some good info.

http://www.butterflyavmcharity.org.uk/self-help/
http://www.butterflyavmcharity.org.uk/current-research/ There is info here part way down the page starting with "New Blood-Vessel-Generating Cell With Therapeutic Potential Discovered"

http://www.angio.org/ - The angiogenesis foundation


#9

Oh! And a really cool video I found from Dr. Oz http://www.doctoroz.com/videos/stop-cancer-growing


#10

I can weigh here with my best understanding of what I heard from Dr. Waner and Suen in my recent contacts. Both docs emphasized that the natural aging process of tissue and vessels does not bode well for blood flow. They were consistent and agreed that as we lose elastin and other proteins in the aging process the skin and vessels become less dense which allows more blood to enter. I am 33 and was asking for their clinical rational for recommending surgery now since my Avm has remained stable and asymptomatic thus far and I was comparing this to Dr. Mullekin’s rec of waiting to see IF the AVM progresses. Not sure if that helps with your question! Keep us posted on what you find!


#11

Hmmm... interesting. Thanks, lolo.


#12

I should re-emphasize this was their opinion of what would happen if left totally untreated.


#13

Thanks for sharing with us Lolo. It's helpful to know these things. Will certainly update what I can find out too!


#14

Hi Kimi, I was 55 when I found my scalp avm. Dr. Suen said that it will continue to enlarge so I should have it removed. I would have thought that because of my age it might be ok to leave it alone but he has said otherwise. I can only speak about general surgeries that I have, and I know that I did not recover the way I did when I was younger. That being said, you do what you have to do to get thru it.

Take care,
DeeDee


#15

I asked Dr. Suen this question when we saw him a week ago (for Jeff's latest treatment). He said that it depends. For people who have an AVM that has been well treated or never gave them much trouble, it can slow down in growth. But often it gets worse as you age, especially if it was not treated, or not treated well.


#16

I have been treating a facial avm since I was 30 I am now 56. My drs thought that after going through menopause things would definitely improve however that was not the case last year I had an arterial hemorrhage my avm has recruited new collateral circulation once again only this time the vessels it recruited were connected to a major vessel. Needless to say it was very difficult to get the bleeding under control embolizations was not an option they put 7 clips on the vessel to control the bleeding and I was put on a respirator due to a dangerous airway. This past week my face swelled and was told again this avm has recruited a new feeder vessel as I await another arteriogram I am very worried. Today I will try to possibly get an appt with Dr Suen hoping he will be able to help me.