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AV Malformation??
Sun, 07/11/2004 - 23:19Topic: Women With Epilepsy
Hi,It's been a while since my last post, but some of you may remember that I'm pregnant. Well, since my sixth week of pregnancy, I've heard this pulsing in my left ear. After a couple of months, I asked my OB about it, and was eventually referred to an ENT specialist. They checked my hearing...and told me about how blood volume increases when pregnant (blah, blah, blah)..and then put a stethoscope to my head. The ENT was quiet for a minute, then asks if the pulsing I hear sounds like, "wah..wah..wah..", like a car trying to start. I said yes. He could hear the sound too, and wanted to do an MRI but needed to check with the OB and hospital to make certain it was safe.He called me a few days later to say that it wasn't safe to do an MRI, until I deliver, unless my symptoms get much worse. He also didn't want to tell me what it could or couldn't be, since there isn't anything I could do about it now anyway.Anyhow, last week at the OB, my doc mentioned how interesting the AV malformation thing was. I asked her what she was talking about and she explained that when I was growing in the womb, one of the arteries or veins in my skull didn't develop properly. While the malformation isn't very common, side effects usually come about in adulthood. Typically, seizures. It may also worsen in time, causing bursting (stroke). I was overwhelmed and confused, and asked if I have this malformation AND a seizure disorder. She said that I don't have a seizure disorder. I have this AV malformation which causes seizures. I could get surgery done and have it removed, and chances are (she says) my seizures would disappear. No more need for medications! So, I'm very excited, but a little scared too. I don't want to get my hopes up, only to find out that I do have both. I've had several EEG's, and all point to seizure activity in my left temporal lobe. How could a vein cause that? Veins don't go into the brain! I just don't get how we could be talking about one problem. I still have 3 months of pregnancy left..maybe I shouldn't have asked the OB what she was talking about! LOL!! Any insight, advice, or feedback would be appreciated!!Thank you for reading my long story! Heather
Comments
RE: AV Malformation??
Submitted by tibet2 on Sun, 2004-07-11 - 23:19
heather, you do have blood vessels that can be seen in brain scans... the vein of galen comes to mind off hand...av malformations can lead to seizures among other problems...... av malformations can cause lesions, calcifications, abnormal function of surrounding tissue.... all of which can cause seizures. a little less than half the people with an AV malformation have seizures. to my way of thinking you still have a seizure disorder but you know the likely cause of it. just because you know the cause of recurrent seizures does not mean you don't have epilepsy. i think the ob/gyn's comment, "She said that I don't have a seizure disorder. I have this AV malformation which causes seizures." is a matter of semantics. i hope the AV malformation is somewhere that makes it accessible for safe surgery.... that would be wonderful indeed! and i am very hopeful for you. have you called your neurologist? this ENT report is defintely something your neuro would want to know about... your ob/gyn should send a copy of report to your neuro so that they are both aware of the situation and can plan for the best care for you and the baby. you should find out if your neuro agrees with the diagnosis. because an AV malformation carries the risk of stroke, your neuro needs to be aware that you have had a change in activity.
RE: AV Malformation??
Submitted by e_nuffofthis on Sat, 2004-07-10 - 08:26
Heather:I really think any chance of a cure should be taken. In the meantime, NO STRESS. Take it easy and have a beautiful baby. I hope to hear lots of good news from you soon.Take care.