Specialist about brain AVM, pregnancy, delivery and medically assisted reproduction

Hello,

I am looking for a name of specialist who could answer some questions about brain AVM, pregnancy, delivery and medically assisted reproduction.

I had a brain bleed due to an AVM when I was 18 years old, I got an 80% embolization, angiography showing that the AVM had disappeared, then suddenly an angiography showing that the AVM had regrow, then it was removed by surgery. My last control (5 years ago) showed no AVM anymore.

Today I would like to talk to a Dr. (H/she doesn’t need to do an intervention) who would have some knowledges about patient who had AVM that were 100% treated and who got pregnant years later. I want to ask him/her what are my risks and other questions based on his/her experience or knowledges of the research.

I don’t mind travelling or doing consult by video, I just really need to find the right person to answer these questions.

The doctors who treated my AVM previously don’t really know about this topic so I am quite desperate.

Thank you so much in advance !

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Nice to hear from you, it has been a while. My suggestion, would be first stop a neurosurgeon, I think they would be able to assess the risk initially in risk associated to the AVM and any ties to pregnancy. My guess would be if 100% removed by craniotomy as confirmed by scans, the risk associated to pregnancy connected to the AVM would be similar to general population. Once confirmed I would carry on with the other specialists. It may be tough to find someone confident in al areas you ask. Ideally you surgeon refers you to another expert in the field. I am in Canada and have great nurse practitioners that will help us navigate through the specialists while they take care of the general health side. Just my thoughts, John.

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Hello !

Not sure how to write on this forum but I still haven’t found any Specialist who could help me with this topic. Since this is now a few years later maybe someone can recommend a doctor ?

Hi there,

I can’t offer any medical advice, but first step is to speak to your neurosurgeon. About everything. No matter how insignificant you think it is.

I have a low grade AVM which ruptured in 2013 resulting in a brain bleed, but I still have the AVM and have not undergone any treatment for it as the risks outweigh the benefits for me. I live in pain, but I’m use to it now. Just at times it’s debilitating pain so I’m pretty much useless on that day perhaps, but I push up until my body says “be careful”.

I’ve been blessed with 2 beautiful kids, with an active AVM. After the birth of my first child, we learned about micro bleeds. So I get these from time to time and it’s been more frequent after the birth of my second child. I developed venous hypertension (this was in 2019), but I’m living with it. My first pregnancy was hard because the pain was there for 9 months straight, but for the second pregnancy, no pain at all. I was under constant observation and I’m someone who listens to their body (although I feel it’s a “superpower” that anyone has an AVM has).

I knew I have no control over the AVM, if it would rupture, etc. but chose instead to “forget” about it and enjoy my pregnancies and to be honest, I’d do it all over again. Both my kids were born via c section. That was a non negotiable because the abdominal pressure of normally delivery increases the chance of a bleed, especially since your blood volume increases in pregnancy. But it’s how I chose to do things. You’ll find your way, even if you need to come on here to rant, I’m happy to listen, we all are, to keep your mind off things so that you can also have a good pregnancy.

Having a good support system helps, and I hope you have that. But we’re all here too, anytime you need and I wish you all the best, with as much as ease and comfort as possible through this journey. Try and enjoy it and just make sure you keep up with checkups and appointments. It’s a whole other journey being pregnant, but pregnant with an AVM is different. Just remember, you’re stronger than you know, and just having this conversation, hopefully allows you to see how I see you… someone rational and methodical but also not afraid to try for what she believes is worth it. And gosh are they worth it! I’d do it over and over again. Nothing comes close to my kids.

I don’t mean to make things difficult, but I’d be remiss in not telling you that raising children is challenging, even for those without an AVM, but if you put things in place to assist if you’re in pain or just for some down time, it helps a lot.

All the best on your journey and I pray it works out wonderfully for you and I’m here to chat anytime you need.

Best wishes,

Suraya

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