Unruptered untreated brain AVM pregnancy

Hi Everybody,

This is my first post but I have been lurking for 18 years!

I’m a 36 year old female.
I found out about my unruptured AVM (in my brain; left occipital lobe) when I was 18 years old.
In the Netherlands the advice on treatment is controversial, with most neurosurgeons advising not to treat. I think I feel comfortable with leaving my AVM alone.

In 2021 I got pregnant and gave birth (c-section) to a healthy baby girl.
Now I am contemplating a second pregnancy. The most important thing for me is to stay a healthy mother for my firstborn. But I would also very much want to give her a sibling.

In the Netherlands neurosurgeons don’t advise against a pregnancy with an untreated, unruptured AVM. But google scares me. I would again opt for a c-section but the whole pregnancy seems risky with the extra amount of blood flow, hormones etc.

I’m so scared and don’t know what would be the right choice. Has anybody been in the same place and have any insights?

Thank you very much for your reply.

I’d say Dr Google is completely scatty and can offer you the best of things and the worst of things with the same detached manner.

There are definitely some ladies here who have gone through this question, possibly over having baby no 1 rather than no 2. I hope they’ll jump in.

Have you discussed it with your doctor at all? And how did you get on with baby no 1? Because my assumption is that what you’re wanting is advice that is more relevant to you, based on your physiology rather than general advice untailored to you.

While I don’t have personal experience with this, I did ask my daughter’s neurosurgeon this question.
Basically what he said was that in my daughter’s case it should be on, but she’s need to be treated by a high risk dr, and that she’d need to continued monitoring of the AVM.
He also said chances are she wouldn’t be able to labor naturally, and she would need a c/s.
Have you spoken to your dr to see what he advises?

Thank you Dick and Gayils mom,

Will your daughter also leave her AVM untreated? Glad to hear her doctor also thinks its ok for her to get pregnant one day.

The doctors I spoke to also never advised against pregnancy. That’s why I went for baby no 1. But now I have my daughter to care for, I’m not sure if I want to risk my health once more. I want to stay a healthy mother for her. Such a difficult decision…

I personally chose a c-section last time and will choose one again, even though the doctors said I could deliver naturally despite of the avm.

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I just came here to say that I do have a treated AVM. But did get pregnant and delivered via C-section.
I also got pregnant a second time, but that one ended in miscarriage. After that I chose to be happy with my one child and give her the best of everything that I could. I did not want to jeopardize her or my husband if they were to lose me.

However, my child has now asked me to adopt another child so that she can have a sister.:joy::raised_hands:t2:

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My daughter actually had a craniotomy at 4 mos. old. At 6 her AVM returned. She is now 15, and in February she went for her first round of gamma knife.
I honestly don’t know what will be by the time she’s ready for marriage and children.
Pregnancy and children was something that I asked the drs about because I was curious.

As a mother I can totally hear your concern in not wanting to jeopardise your health or life to have a child BUT also having that deep desire to have another baby.
And your case it’s a very serious and genuine concern.
Wishing you lots of luck and peace of mind ( for lack of a better word) with whatever you decide

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I’m so sorry you had to have your daughter operated at 4 months old, that must have been a scary time. I also read that avms sometimes could grow back in kids. Hopefully gamma knife will be succesful and her avm will be gone soon!

Good luck!

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When I was pregnant (both times) I didn’t know I had an AVM, so I didn’t know to be worried :slight_smile: . I had one via C-section and one naturally. So it can work out , but I agree with Dick and have a chat to your doctor.