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.

Sunday, July 6, 2008


all is going so well. i was dealing with being more tired and needing to rest constantly to avoid a seizure (de ja vu hallucinations or waking up from sleep in a state of amnesia). i always felt this was because of the drug i was on, keppra. it's a sedative and i could not get my full energy back. it was scary to have to rest or have these seizures. 
my wonderful neurologist allowed me to try to come off this drug starting two weeks ago. i have two more weeks to go of slowly decreasing it. so far i only feel better and more awake and energized. 
if this continues to go so well i will be able to stay off this drug. i cannot wait to feel my new healed brain without the avm they removed and without this drug. maybe i'll be really good at math like my brother is.  july 21 should be my first day drug free. i am so ready!!!!

Friday, February 1, 2008


It's official!! My surgeon's office called and I am done with this. It is over. No more tests on my brain and it will not grow back. I never need to check for this again.
I was on a walk when they called and all of a sudden the palm trees never looked so beautiful. The beach air, the pink sky, every step is sinking into my body.
I have never felt as calm as I do in this moment.
I am breathing in a new way now.

Thursday, January 31, 2008


HELLO! It's been a little while now. I am thrilled to report that I feel back to normal. These two pics show the progression of my left eyebrow and forehead being able to move again. The left side is not as strong yet as the right side but it's getting there.

It's now been 3 months since my surgery and I think I feel as normal as ever. Physically my body is back to where I was. Emotionally I am feeling ready to deal with all of this as the shock has now worn off or is wearing off.
The best news is that I had a follow up angiogram last week and the report is that my brain is now clear. I do think that means I am done with this but I will confirm that with my surgeon when he can talk to me. They are busy people but I was told that I can completely trust the opinion of the doctor who did the angiogram. The report is all clear!

I am still on anti brain seizure medication, Keppra, but thankfully I don't feel it anymore. I take an EEG in April and hopefully show no brain seizures going on. Then I can slowly try to come off Keppra and hopefully stay off it forever. The possibility is that the AVM pushed against my brain and caused permanent damage which will have the brain seizures (hallucinations for me) continue. Those would not be fun to feel again.

Right now Keppra is the only issue I still have on this whole thing. I feel completely lucky and blessed and what a miracle this entire situation has been for me. If remembering to take a drug twice a day for the rest of my life is the worst of it, I'll take that any day.

I do know that I have a lot to say about all this. The words are not clear to me yet but I can tell I want to do something with what I've been through. Perhaps it's about talking to others who have to go through this. I am feeling out all the options right now on where to do service with this. I feel like I have a lot to do.

I will update again. Thank you so much for caring. That caring I feel from everyone is the strength I carry inside myself.

Saturday, November 17, 2007

me now

it's so funny because people expect me to have a shaved head but instead i look normal. out in the world they have no idea that i just had brain surgery. this is what my scar looks like now. they managed to shave my head in a way that covers the scar right up. in a way it feels very weird to go through effort to show this when it still feels so obvious inside of me. weird for 3.5 weeks after this surgery to look like a normal version of me.

the only difference right now is that i can't move my left eyebrow up, or my forehead (like i've had botox). that may come back they say. i wonder how different this experience would be if they still shaved everyone's heads like they did a few years ago. i think i'd be in shock.