I am 22 years old and have a cerebellar AVM and a pontomesencephalic cavernous angioma. The Doctor's don't want to do any treatment just yet for it because they say that the risks outweigh the benefits at this time. I am really nervous that when I get married and start a family that pregnancy will increase my risk of having a bleed. What does everyone know about AVM rupture in pregnancy? From what I have read and hear, it significantly increases one's risk of bleeding. Any input would be useful. I am really frustrated that the Dcotor's won't do GKR right now...I know that they know best and all, but I am really scared for a rupture because I am a very active person and enjoy doing a lot of different activities. Any input would be useful. Thanks everyone!:)
This sounds like a good time to get second and third opinions, neurochallenges. You can get copies of your scans and send them to some experts. Pregnancy can definitely add to your risk, as can intensive exercise. You may also wish to join the Pregnancy and AVM group (http://www.avmsurvivors.org/group/pregnancyandavm).
That’s how we discovered mine. Pregnancy went well. Had some headaches in the first & third trimester. Thought nothing of it. A few weeks postpartum is when they fully ruptured. My ob doctor says it wasn’t pushing that caused the rupture. It was a fever I had from mastitis (her best guess.)
I like your name--fitting for most of us here!
If you are physically very active now, I would guess the risks of rupture during pregnancy would be lessened, since your body would already be in better condition. I suspect many with AVMs are referred to C- Sections, as a preventative measure to also lesson the risk of rupture during delivery.
Chari had two kids, natural childbirth (though she was SCREAMING for drugs near the end, and the DRs said it was too late for them to kick in) in her low 30s, and her AVM showed up at 40 via a seizure.
If your Drs haven't treated a bunch of AVMs like yours, a second/third opinion might be in order.
Best wishes,
Ron, KS
Thank you everyone for your comments. I have had a second opinion by Dr Steinberg out in Stanford University in California. I just have a yearly MRI scheduled in a couple months... I am not sure what to expect. I am getting ready to graduate as an RN-BSN in MAY and I am nervous about the future and everything. I have been getting more headaches, and falling lately and passed out last night and was taken to the ER via squad. I guess just nervous about everything.
Hi there,
I have had two kids after a bleed in the pons.
They never have let me go through labor and monitored me like a high risk pregnancy
for the second child.
I had 2 c sections and my kids are great-
i have had several bleeds since then too but years after the kids.
good luck,
Heidi
Its an impossible question to answer as each case is soooo different. I had two pregnancies (incl twins) w/ an unknown and AVM and was fine. I was told i could have another pregnancy if i wished before treatment. Or between gamma treatments.