Preparing for the big day(s)

First, I really want to thank all who have opened up their lives to share their AVM experiences. I pondered whether to pursue treatment of my AVM. You see, I am in the "grey" area; do not have to have treatment at this time, but my chances increase as I age that I may have a bleed or stroke. Two strong women shared very enlightening thoughts about their experiences, which hugely impacted my decision to move forward with embolization and surgery. Special thanks to Jaime P and Sharon. I often thought about your comments and experiences, which helped in ways you will never know. My BIG days start with embolization on 9/28, followed by surgery on 9/29. I have met with my new interventional neuroradiologist, Dr. Fernando Venuela of UCLA...he was quick to set me at ease with his plan of attack. I have faith in he and Dr. Neil Martin. I feel safe with them. All I need to do is take a deep breath, relax and trust them as they do what they are known to do relatively well.

Before I end this blog, I would like to appeal to all who have O- blood. I have really small veins (which is another disorder), and have never been able to successfully donate blood (lord knows I've tried many times), let alone a supply for my upcoming surgery. I learned that while O- blood is universal for most blood types, those with O- can only receive O-. There is a need for more donors of O-...please support your local blood bank. Help save a life...

Take care


I am so glad you are going to do something about this now! This is done on your terms. It is always helpful when you find that connection with your doctors. Your life is in their hands and they know this. Knowing they are positive about the outcome and confident in their abilities helps a lot too! My oldest son is O+ and he told me he is going to donate blood as soon as he is old enough. My brother in law is also an O not sure if he is + or -, but he donates on a regular basis. I have never been able to donate blood. I never weighed enough and when I did I was pregnant or had just gotten tattooed. Now I can’t because of the Lamictal. I wish you all the luck in the world! I look forward to your posts telling us you are ok and they were successful! It is a beautiful life we have and taking every step to extend the all to short time we are here is worth all the fear that takes over your thoughts and your dreams. The pain is only temporary and with time will be just a memory.

I agree that it so good that you are going ahead with treatment now. Had I had the ‘option’ (prior knowledge before mine burst), I would have gotten all of my ‘affairs’ in order (researched AVMs, made/had a ‘plan’, and then had the treatment). I think anyone who has an AVM and has prior knowledge of the AVM should DO treatment (if treatment is a possibilty)… that way, we help ‘influence’ the direction and duration of our lives (that is, to the extent that we are able to ‘influence’ it). It’s always better to be ‘safe than sorry’ and I commend you on your decision! After all is said & done, you will be ‘relieved’ you sought treatment… as leaving it untreated while knowing about it is stressful. I wish you all the luck and a smooth, speedy recovery!

Good luck Marie! Hope the embo and surgery go well and that you recover quickly. I too am prparing for a surgery next monday (for my facial AVM) and am super nervous and have a lot of anxiety. But I know that this support group is an enormous help both pre and post op. We will both do well and be here to tell our tales soon after.
I wish you the best this month at UCLA.