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AVM Survivors Network

New Dx / Anyone else watching and waiting?

#1

Hey everyone. Thank you for the add to this group. I am 38 and was recently diagnosed with a right frontal lobe cerebral AVM after two weeks of continuous headache. A quick phone conversation with the neurosurgeon led him to recommend watching and waiting based on location. I have my first clinic appointment w/ him Thursday so hoping to discuss in more detail.

I would love to hear from others who are watching and waiting. How long have you been doing it? How often do you get MRIs? What type of activities do you avoid? The past few days have been mentally difficult as I try to imagine living with this and basically waiting for it to bleed.

Thank you all!

#2

How large is your AVM? Is it vital areas? Just wondering why there is a watch and wait.

#3

Mine is in the left frontal lobe.

#4

Right frontal lobe near motor and sensory cortext. 1 x 1.4cm…so small.

#5

Mine was 5.4 cm when it was first discovered. I was having seizures so I guess that’s why they started treating mine. 3 embolizations and 3 radiation treatments later and it is still there. Watching and waiting to see what it does. It had recruited new arteries in between the second and third embos and radiation treatments. They had to do a 2 stages treatment plan with the radiation spaces 6 months apart. They missed some of it. So it grew back.

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#6

How long have you been at it? Any effects from the treatments so far? Now that I have the diagnosis, it’s hard not to fear it’s going to rupture tomorrow. I need to learn to live with it. Any tips on that?

#7

Hey @DWobbleton, welcome to the group. I’m not going to proclaim myself the king of watching and waiting but…

I watched and waited from 1979 to 1986
I watched and waited from 1987 to 2009
I watched and waited from 2010 to 2018

How often did we get an MRI - every couple of years unless we had a reason to (something that looked, felt or sounded like it changed). Mine was/is left shoulder-neck for most of that time and has since spread upward into my brain, thus the major Embolization in January of 2018.

I had annual physicals and if needed or suspected, we would move up to a specialist, radiologist, Neuro etc. I have 11 clips in my neck from the 1978 treatment so between that and the coils now, my MRI days are probably pretty limited.

What things did/do I limit? Anything extremely cardio - getting your pulse up puts pressure on your blood vessels and could possibly maybe but it’s never been proven, enhance growth of an AVM. Since mine was in my left neck and shoulder, anything but recreational biking wouldn’t work. Snow shoveling, heavy lifting, basically anything that would make you “grunt” while doing it is probably better to avoid doing too much of it.

Now keep in mind, none of this has, I believe, been proven in research trials or anything like that. For me it’s been kind of a “back into it” type of thing. For an AVM to grow, the blood vessels have to grow and expand somehow. If your blood pressure is lower, if you don’t do things that make it go way up, that probably will help rather than hurt. Does that make sense?

You know, the way I see it, if I live life longer and more symptom free by walking my dog rather than running a half marathon, I’m okay with that. If it gives me an excuse to by a snowblower rather than a shovel, I’m okay with that.

And I’ve probably rambled more than I need to. Hope this helps and know you are not alone.

TJ

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#8

Since October of 2012. Mine if removed when it was first found could have affected my right side plus my speech. But, my doctor said if need be , he could remove it since it was so much smaller. Safely.