A first step

I finally sat down with my husband the other day and said, “I think it’s time I fixed this.” We haven’t talked about it in depth since we got married so it was a little odd for me. He’s gung-ho for treatment though and is completely dedicated to whatever I will need in the process. I couldn’t expect any less from him… he’s amazing.

Somehow, I mananged to get a same-day appointment with my neurologist yesterday and said ‘ok, let’s do this thing.’ He’s starting by switching me to Keppra and taking me off Depakote which will be nice. It will also put me on the right track to have children someday. He also talked to me a little bit about what’s going on and where I should go from here. I’m recommended back to the doc that did my angiogram… who my neurologist proclaims to be a genius and have all kinds of connections in the world of neurology. That’s cool too because I love that doctor and wouldn’t mind being in his care at all… great guy.

In the back of my head, I have a fear of leaving Depakote. It’s like a safety blanket to me. I know so long as I’m taking it, I’m ok essentially. I also have a fear of the 6 months of not being able to drive that will follow the switch. I can’t imagine a more horrible feeling than not being able to hop in the car and go where I need. Just typing this makes me want to call the whole thing off. I’m a big wimp.

My neorologist also dropped the bomb that I’ll probably never be safe from seizures, even if this AVM is removed. I’d never been told that and was a little heart broken. He says my seizures come from locations not associated with my AVM. That’s a let down.

You can not get zapped with radiation to get rid of this darn AVM?

I haven’t been able to drive in a year because of strong pain meds and I sure do miss it…but I hold on to the thought that someday I’ll be rid of this stupid AVM and able to drive again! You can do six months, Beth! You can come complain to us when you get frustrated! :slight_smile:

Thanks so much everyone. It really brought tears to my eyes that you guys are all so sweet!
As far as treatment… I just don’t know. I can choose from Gamma Knife or good ol’ surgery and I can’t seem to make up my mind. I’m exploring every option right now which is why I’ll be going to see Dr. Budzik to talk to him next.

Ok Beth Just rely on the Dr.s and what they are doing for you…!!! They are professional’s. At this aspect of your AVM epidimic. Just have faith… eeeehhhh!!! And I will be praying for you…