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AVM Survivors Network

Newly developed AVM?


#1

Hi all. I was diagnosed with an aneurysm on my MCA 2 years ago. My mother past away quite young from a rupture of an undiagnosed aneurysm and after a recent scan showed a change in shape and size of the aneurysm a coil and stent proceedure was decided upon. The proceedure was attempted late September this year but aborted at the last minute due to the discovery of a newly developed AVM further along the MCA in my frontal lobe. I am now awaiting gamma knife treatment.
In the past 2 years I have had 2 CT scans, 5 MRI’s and an angiogram non of them showed any sign of the AVM. Over the past 2 years the people closest to me have said that they have noticed a big negative change in my personality which has caused major problems in my life.
Anyone had similar experiences?


#2

Hello @Ian76 welcome to the site glad you found it.
Considering where your AVM is not shocked you might be having some personality issues the frontal lobe control lots of important things for us.

But you have already been through a great deal. Sometimes others can’t handle more doom and gloom esp when they can’t see it. Since these AVMs are not like Parkinson’s with visible and knowing symptoms.

You are entitled to act freaked out, pissed off, scared etc.

I know after my stroke I lost my ability to swear and became super mellow. Then had a small stroke after my first embolism and got my swearing back so finally stopped calling people doo doo head when I did get mad.

AVMs typically are only seen with a MRA or angiogram

Hugs
Angela


#3

After my rupture and 2 frontals Strokes I had some change in my my personality.
they had a hard time finding my AVM even after the rupture with a normal MRI and CT;they didn’t find it until they used contrast and then they seen it, so depending on the size and location of the AVM I don’t think they always show up easily on normal scans


#4

@Ian76

Welcome!

I think there are several people who’ve had scans where an AVM has somehow appeared despite previous scans. I’m sure untreated AVMs can grow in size, so that may be a reason for missing on an earlier scan, though most AVMs are believed to be congenital, so theoretically it’s been there for a long time. My AVM was a dural AV fistula, which I believe current theory is that those are acquired rather than being congenital. Mine was playing into veins passing by my ear, so I could hear my AVM and it went from very faint in Oct 2015 to quite noisy a year later. So who knows how long it’s been there.

I’m pretty sure frontal lobe affects mood and personality, so that seems connected, too.

Hope this helps a bit,

Richard


#5

Ian76 Welcome to the family and I can say from first hand experience that I had a CT prior to my AVM which was not found until several years laters with another CT with contrast… I also had my AVM located in the right frontal lobe and can say I also had many comments from family about my moods and when put forward to my neuro was told it is not uncommon for the changes due to location and affects from procedures… also note the whole process is a lot for ppl to take on and can cause a lot of stress so we are just human at the end of the day… God bless!


#6

Agree with the other comments here. My understanding is that the vast majority of AVMs are present at birth and are connected with foetal development. My own AVM showed itself by causing me to suffer from hydrocephalus at age 12. Even then the CT scan I had wasn’t detailed enough to show it up. It was only years later when I was offered an MRI that the medics could see it.