Brain AVM warriors (esp Singapore)

Symptoms & Treatment Gamma Knife Radiation
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Hello everyone, I’ve been newly diagnosed with an unruptured brain AVM, no symptoms too, incidental finding. I am 34 yrs old.i am from Singapore.

Anyone in or was in a similar situation as me? And from SG too?

I am still in the midst of meeting with neurosurgeon and radiologist…

It seems like all possible solutions comes with risk. Including risk of getting cancer in future? Anyone read that online?

I am scared, overwhelmed with info on the internet.

Pls reach out if you are in a similar situation, better still if you’ve been brain AVM free with no deadly side effects…

Also, anyone left it alone?

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Hi Aysiah, wellcome!
Me, as you, as a good part of other subscribers found it incidentally without rupture.

While there might be someone that will never experience emorrage or deadly side effects, it is allways a good preventive approach to cure it if possible.

If I can ask,
Why you got the mri to find it?
Where is located? How big it is?

These factors will make the decision for doctors to choose the way of treating it.

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Hi Aysiah! I found out about my AVM due to haemorrhage, hospital stay and then I eventually had Gamma Knife. It is now obliterated. I know for me, and I can speak for almost all of us, sorting out the news is incredibly difficult, Dr. Google does certainly overwhelm us, it certainly did me, and then ultimately found it beneficial when I was able to accept my condition, and explored options. I was well supported by the medical system and my neuro team in the decision process.

I had three options for treatment, craniotomy, GK or to monitor. The least risk was GK, my AVM was smaller and I did not wish to experience a bleed. The decision ultimately ended up being sound, but at the time it is hard to define the “right” decision. Based on all the information and associated risk I was at pece with my decision to proceed via gamma. It was made a lot easier in having complete trust in my care providers.

I was scared beyond belief with the bleed and then the dealing with the diagnosis. This group was so great in helping me understand what was going on, but also in realizing what I was feeling is common in these types of situations.

We are here for you!

John

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We do have a bunch of people in Singapore:
@azhar @littlecar @EdDruid1065 @justgrateful so you’re not alone!

When you read about the risks, I tend to think of it as an unwelcome turn in the road of life: suddenly you find yourself walking along a path that looks dark and scary. At some point there will be a further branch in the path: to take surgery of one kind or another, or to carry on along the route, untreated. At this juncture, all of the roads ahead look unwelcoming but as you understand more about the situation and as your doctor explains what they believe they could do for you, hopefully some of the ways forwards will look a bit brighter.

We like to think that life is risk free and until we get a diagnosis like this, we can make believe that that is so. But it isn’t true. Life has a whole range of risks that can come along. We shouldn’t believe that we were without risk before our diagnosis: we weren’t: we just knew less about the risks than we do today.

There are risks also associated with any of the treatment options but as you get to learn about these things in a more sober, careful, supportive environment than the thoughts of Dr Google, hopefully you’ll be able to rationalise this new path and be more comfortable to choose which way to go when the road branches again.

This is my favourite poem about taking the less trodden path, like all of us here have done:

THE ROAD NOT TAKEN

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Poem by Robert Frost

Welcome on board! I felt exactly the same as you eight years ago.

Richard

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