I am new here! My brain AVM was just diagnosed around a month ago- I had been having really severe migraines and trigeminal neuralgia. So as a result, my neurologist ordered an MRI to rule out MS (as well as other things) and they found an AVM in the mid pons/brainstem (it has not bleed yet). Unfortunately, not only is the location bad due to limiting treatment options, the AVM is also right at the trigeminal nerve nucleus (and thus causing the trigeminal neuralgia- severe shooting pains down the right side of my face). The neuro was relatively optimistic since it is small. But he also said surgery is not an option. I feel okay, but am dealing with the pain issues involved. Does anybody else have this? The plan is to go on anti-seizure meds at some point, but I am trying to hold off...
Also, has anybody had a baby after discovering their AVM? I already had one baby and at some point would like another...the neuro seemed to think it would be okay, but I havent talked yet with my OB. Do they require a C-Section? Any experiences would be really helpful!
Thanks everybody. This seems like a great group of people- sorry that this is what brings us together though.
Pattie: To your question about having a baby. I have given birth to three children.
Two was planned homebirths and everything went well. That said, I did not know I had an AVM before some years after, but I had already had several years with seizures that nobody could explain.
So I was a bit anxious how that would combine with pregnancies. I did have some more seizures than usual (only mild partial type on my left side) so I learned how to slow my pace and have plenty of rest.
If I had known that I had an AVM I would not have planned homebirths, but everything went natural and well:)
Wish you good luck! Positive thoughts from Hanne xxx
Hanne, Thank you for your support and good wishes. I am hopeful that it will be okay. It seems like there just isnt a whole of information out there about pregnancy and AVMs. Thank you again!
reading this post actually made me think.. wow.. someone just like me.. i have been trying to get diagnosed for 4 years now.. they thought at first it was ms because of all the symptoms i have been suffering through but found through an mri that i have avm disease at first the avm was at a 3mm in size but has grown to an 8mm in size and has a small hemorrhage, i have had seizures, numbness, sever fatigue, and aura migraines, vision loss, speach problems, balancing issues, weekness in my legs and arms... right now things are uncertain on whats gonna happen, but we also recently discovered that the avm disease is also in my back as well as the brain so it seems to be spreading on me.. along with that the doctor just diagnosed me with myelopathy cervical spine disease.. anyways my whole point is to tell you your not alone. i was just diagnosed a month ago after 4 years of searching for answers.. but pregnancy does make the avms worse.. my last pregnancy i lost the baby because the seizures and during that was hospitalized due to infection.. then found that the avm decided to hemorrhage.. sorry to hear about all that your going through.. if you ever need to talk feel free to contact me via this or facebook Dawnna Mullen.... good luck my friend