AVM Surgery - tough choices

Hi everyone

My husband is 40 years old. He has a large, deep AVM. He has had 2 hemorrhages in his life - one at 21 that they embolised and one at 24 which they said was smaller (though gave him minor paralysis on his left side) and so didn’t treat.

They told him at the time that any invasive treatment was too risky as it was deep, large with several weak spots. And so he has just gotten on with his life, living to the fullest.

This year I convinced him to go for a check up and he’s had an angiogram. They have told him he isn’t a good candidate for gamma knife. But they are now recommending a staged endovascular surgery to try to clear the AVM.

They has told us that it would likely be a 3 stage programme and that each surgery presents a 10% cumulative risk of harm to life, limb & mind (their words). I know risk of reoccurrence each year is 2-4% though I’ve read different stats and his does seem high risk and so could be higher.

They have left the decision with us to make - treatment or just leave it. We have a 4 year old son. I have no idea how to help my husband make this decision.

Anyone been through a similar experience?

Love and strength to all

B x

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Hi

First, welcome! It’s great to have you on board. It’s fair to say that none of us like the choices that we get and it is always difficult to decide which is the best way forwards.

I’ve had a single embolization but my honest answer is that mine was very peripheral, easy to get to, and I felt I was getting more poorly very quickly, so it was (pardon the phrase) a no-brainer for me.

For other people, the deeper it gets and certainly the more complex it gets, the better choice can be to leave alone. There is no way that I want to lure you one way or the other.

In terms of finding some friends, I think if it is deep, make friends with the people in the Cerebellum and Brainstem space: they’ve certainly had similar choices to make. I’d say embolization is a relatively unusual option: fewer people in the US (i.e. most of the patients here) are offered embolization alone as a treatment. The UK seems a little more forward on choosing this route forwards. Whether that’s driven by outcomes or cost, I don’t know(!)

The other person who comes to mind is @corrine who I hope might see this message and share a bit of her experience, though you’ll find her posts on here already. Corinne has an AVM that is certainly in her occipital lobe rather than very very central / core but I think she’s had two approaches with embolization already and is considering / waiting for attempt no 3. The honest impression I get from her description of her embolizations is that her AVM is complex and that by having embolization no 1, it made further intervention more complicated but she’s had more recent consultations with her doctors on a further treatment.

Anyway, hopefully by having a read around it helps you both to get a feeling for what he’d like to do. I do think there’s an element of benefit from learning how others got on but the other side of the coin is that it is only your husband’s doctors who understand his situation, how complex or how feasible it is to intervene and how confident they are to effect a good outcome.

However we can help you to rationalise all of this, we will.

Welcome! It is very good to have you on board. It is only a shame that we need to meet in these circumstances!

Very best wishes,

Richard

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Sorry to hear about this but I guess the decision needs to be made with consideration into everything such as his history & future expectations… it’s not an easy decision but trust that technology advances everyday in the medical field… God bless!

@rebben

Hi

I was essentially only given the option of surgery in 1990 and this was post rupture. In many ways I’m glad I didn’t have a choice but I was also very grateful to be treated by 1 of the best neurosurgeon.
In my opinion not taking treatment could give your husband a severe bleed and major life changes whereas an operation has managed risks and he is still young enough to recover or adapt if necessary.
I don’t know what stats are available on surgery but ask lots of questions.
It’s a difficult choice…

Good luck
Tim

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