Thursday, October 23, 2008


Today was the surgery one year ago. I am now off Keppra for 4 months with no seizures. I think it was that Keppra that was continuing to give me seizures. I also think that AVM was related to my blood circulation disorder in my left leg - (Klippel - Trenaunay Syndrome)

I remember all those doctors saying it takes a year to recover from this. I have to say, they were right. It really took me time to fully get my energy back. Now I have to get back in shape but hey if that is my biggest problem, all is ok. 

I still feel like the luckiest gal in the world. I am going back to UCLA hospital today but for a different reason. I am joining the committee for fund raising on brain research. That feels like the most perfect thing to do today. I have a lot to do now as far as being a person who went through brain surgery. I have no idea what all of that is really, but I feel a lot in there about to motivate me. One thing I want to do is volunteer to drive someone who cannot drive on their own. What an experience in LA that was. Thanks to my friend Dr. Pat I actually had fun not driving as we made my errands and shopping into regular outings. But what do people do without their own Dr. Pat? 

Today is huge for me. It's like now I can say it. I had brain surgery. Somehow the anniversary solidifies that it actually happened. 
I have a lot to do now.


Katie said...

Let me know where to send a check! Congratulations again.

The Knoxes said...

I was just diagnosed with AVM on December 17th after a small leak (not a rupture) and the worst headache of my life. I will have brain surgery probably in February, but I just wanted to say thank you thank you thank you for this blog. This is the single most important source of information I have found. It has helped put my mind at ease (literally). It is such a scary time and so many questions are rattling around, but your honesty, pictures, and story are making it much easier for me.

Thank you,

Jason Banks said...

Hi name is Becky and my 8 year old son was diagnosed with an AVM after a series of extreme migraine headaches. I'm just looking for a little guidance and info on where to go about this issue. The neurologist I met with is unconcerned about the AVM and it's just not sitting well with me. Any advice you can give would be greatly appreciated! Thanks!

Jason Banks said...

Jason is my's his google account

Jason Banks said...

Jason is my's his google account

Amberly Reyes said...

I read your blog and how your leg first started to feel numb.
Back in march 2017 i started to feel tingling/numbness on my right side of my body and horrible migraines that wouldnt go away with normal pain meds for about 3 days. I didnt know what it was i slept all the time and while i slept my body would shake a bit almost like having the flu.then thr final thing that made me go to the ER was my speech being slured, i was having some trouble walking and my mind couldnt process anything anymore. I went to the ER got a MRI done and while waiting for the Dr my right side of my face started to have spasms luckily he walked in right when it was happening and ordered some anti-seizure meds. He then told me that i had cavernous malformation and a hemorrhage that was causing irritaing on my brain. Now today im a week away from getting my malformation/hemorrhage removed.