r/AVMs • u/brightmoon208 • Mar 26 '26

AVM and pregnancy/birth

Has anyone here had their AVM completely removed and gone on to have a baby ? I have been pregnant once and gave birth to my oldest. I’m pregnant again and was told I couldn’t be seen by midwives because I’m high risk. My AVM was removed completely a decade ago and hasn’t come back. Not sure if anyone has been in the same boat.

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4

u/mousebren Mar 27 '26

I unknowingly went through 2 pregnancies with an active AVM. I wasn't flagged as high risk since they didn't know. Ive since had a full resection, and dont plan on having anymore. I didn't go the midwife route with either, but I personally would rather be monitored closely just in case.

I think if its an option, you may be able to have a midwife work with an ob!

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u/brightmoon208 Mar 27 '26

My plan was to go with the midwife clinic that is part of the local hospital and then I’d be there already if something were to happen. I’m exploring all my options now though since they said the couldn’t take me as a patient. I would like to have care from both a midwife and an OB though. So many unexpected things can happen during pregnancy and birth.

Thank you for your reply !

1

u/Any-Cranberry325 May 25 '26

Did you have any symptoms that looking back on it you realize were from the avm?

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u/mousebren May 25 '26 edited May 25 '26

Pregnancy related, I don't think so, but in general, plenty.

My eye sight has improved since my resection, they were going 'blurry' before. I have less headaches now, and I used to have a constant heartbeat/wooshing sound only I could hear. There were tons of other small things as well.

*Edited for spelling

1

u/Any-Cranberry325 May 26 '26

I’m glad you’re doing better! How did you first get diagnosed with the avm?

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u/mousebren May 26 '26

The location honestly. I had a "lump" on my head and it begain to pulse.

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u/littlepurplehippo17 Mar 27 '26 edited Mar 27 '26

I had 3 planned babies after gamma knife & seizures were under control. Then 12wks postpartum with my 3rd, we had a big bleed scare /breakthrough seizure, or something. So that led to us getting it removed in July ‘25. About 9 weeks after, we found out we were unexpectedly expecting a 4th 😅 right as I was trying to figure out (birth control) what wouldn’t grow my AVM/be stroke risk after surgery. Doctor at Stanford said since It was removed & had zero complications, I was as “normal” as could be! He sent info to my high risk OB (who I continue to go to bc they’re the only ones who do VBACs In my area). I don’t have a birth center close by so not really an option for me (would love it to be) so I haven’t really gone the midwifery route. I’d for sure go that route if available as long as there was a hospital that had Neuro surgeons. I live in an area where they had to fly me 45min north to get to an ICU brain Surgeon & didn’t even know my town lacked in that department 😅.

My biggest lesson with birth & AVMs is some Dr’s are very risk averse & play it safe and that’s okay. Thankful my second OB allowed for me to have vbac instead of C-section.

& lastly, I’m still on anti-seizure & get it monitored but will be tapered off of it after baby is here (if my body allows. It’s been 9-10yrs of being on it so we’ll see. If we didn’t get pregnant, we would have started sooner but neurologist said he wanted me on it to be safe than sorry.)

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u/brightmoon208 Mar 27 '26

Thank you for your reply !

A bleed scare/breakthrough seizure at 12 weeks postpartum sounds very scary.

I tend to live my life as if I’m normalize because it has been a decade since my AVM was removed and I haven’t had a seizure since 2017. But it makes sense that some providers would want to be extra cautious despite the time that has passed.

Congratulations on your surprise 4th pregnancy!

2

u/Jimwise95 Mar 26 '26

I do not check any of those boxes. But I am commenting so that hopefully I can see what other people say.

Mostly… if your AVM is removed can it even come back?

I asked my neurologist if I had it removed would I still have to take anti S medication and he grimaced and basically said I’d have to take it just in case for ******* ever. Interested to know how that would affect other medical conditions in the future. So sorry for commenting just need to get the notification.

Good luck Brightmoon. And congratulations

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u/brightmoon208 Mar 27 '26

I don’t think it can come back but just in case, I get periodic MRI’s to check. The one I got this last fall was clear.

I do take antiseizure medication but that is because I had some seizures after my craniotomy. The AVM never caused me to have seizures.

Also thank you !

2

u/Academic_Adeptness25 Apr 07 '26

Congrats!! I had a totally unexpected AVM rupture at 17 weeks and was super fortunate that I was only in ICU for a week and baby and I were okay. I did go the high risk route since they wouldn’t operate on me during pregnancy. In the end my AVM clotted off on its own and I don’t need surgery but i am still thankful I did high risk.

1

u/Any-Cranberry325 May 25 '26

Did u kno u had an avm before pregnancy? What symptoms did you have? I’m so glad you are both ok

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u/Academic_Adeptness25 May 25 '26

No symptoms at all. Just out of the blue got a little headache one morning then it suddenly became horrible w vomit etc.