Yesterday I had my a follow up appointment with my neurologist. Its been one month since he told me I had four AVMs. My CT scan was completely normal (no bleeding - they didnt use the dye). My MRI was unchanged (still four decent sized cirles/marks). And they hadnt got to look at my 24 hour EEG yet.
Now he thinks they might me another kind of vein malformation but not AVMs. He made it sound like AVMs always involve veins and arteries but I cant find anything that says that. I cant find anything on any other type of brain vein malformations.
He thinks what I have might be less serious than an AVM. He still believes the four malformations are causing my seizures.
In a couple months they will be getting a new, more detailed MRI software that he wants to use as soon as they get it to get a more detailed look at these things.
Has anyone ever heard of brain vein malformations that arent AVMs? Im shocked that he changed his mind when last time he was so sure. Its weird but I was kind I had a cause of my seizures and I was ready to get them removed and be seizure free... he doesnt think thats an option anymore.
This is exactly what i was thinking too Hilary and Patti= the cavernous malformation would involves the capillary bed...
good luck and feel better
and when in doubt seek another opinion!
Hey Hilary, I echo heidi in 2nd, 3rd, etc. opinions :) - till you are comfortable w/direction of care.
Take care & pls keep us posted on how you're doing and diagnosis.
Hilary. You have come to the right place for support and information. As others have written, please go to a neurologist who will be more specific regarding your questions – a second opinion. Though CMs are rare, there is plenty of very good information out there. I believe Patti posted some web sites. My CM presented with a seizure. I was able to find out almost immediately after a CT scan that I had a CM; two weeks later an MRI confirmed this diagnosis. In other words, my doctors were on it. We looked for anti-seizure meds to control the seizures, which did not work. In the end, I went with a combination of surgery and higher doses of anti-seizure meds (vimpat and lamotrigine) to control my seizures. So far, so good. No seizures since September. It’s your brain – don’t settle for a neurologist who is “guessing.” George
I have always found that in the presence of a doctor I have tremendous difficulty coming up with the right questions. And then after I leave the appointment, I think, "Why the heck didn't I ask ....." Especially if you get surprised by new information as you did, it's really hard to process that information quickly enough to know what to ask next.
Dancemom - thats exactly what I did. I was so shocked that he thought it might not be the AVMs (and I had a ton of questions about that) that I didnt really know what to ask or say. After I left I started thinking "I should have asked..."
I think my doctor is pretty good but I will think about the second opinion since so many people think its a good idea. Ive had partial seizures my whole life and grand mals only recently. He just want me on a high does of Keppra for now and move on once he gets this new fancy MRI software (I guess its not super common and they will actually be the first in my (small) state to have it). I keep telling myself "if youve had it your whole life whats a few months?" but I worry too much as it is.
Thanks everyone! I didnt find anything about other malformations until you guys told me.