Dear all,
Was diagnosed with an AVM (grade 3 on Spetzler-Martin) in the Cerebellum in July '09. No symptoms ever, it was an incidental finding after a snowboard accident.
I am scheduled for treatment at Barrows, Phoeniz, Arizona on March 16-19 2010. First up is embo, then surgery.
The last months has been okay, I have accepted I have the “thing” in my brain and just want to get it out. Feel lucky that I discovered it before it bled; I can go to the best doctor in the world; and it is rather low risk (5% of serious neurological deficit or what is worse…). Now as the date comes closer, it is getting more tough but looking forward to 3 weeks down the road when I will be leaving the hospital without the AVM 
A.
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Good luck to you and your country.
Andreas,
I’m thankful that your AVM was found before it had actually bled… your snowboard accident was a blessing in disguise. Please keep us posted on your surgery and I wish you all the best. I’m waiting on my referral to UCLA med center to treat my AVM via radiation. My docs told me that because mine is located deep in the cerebellum they are not going to touch it surgically… only downside is the radiation treatments can last 2+ years.
Anyway you are in my prayers and keep the faith… I know all of us who have these want these “things” out of our brains.
Take care and God bless
Jessica
Hi Andreas,
You’re at a great place–the Barrow–and in great hands. I was there just about 15 years ago and was treated by Dr. Spetzler. My AVM was above my corpus collosum, between my hemispheres. Like yours, a grade 3 (maybe 4) on the Spetzler-Martin. Healing takes time but I have no residuals and grateful for that. May your surgery be equally successful! Best, Alexis
@Alexis: Thanks a lot for this. Tell me more about recovery… I expect to be tired and have headache but be back at work in 4-8 weeks time…
@Kate H: I hope to see you and your sun there. I am sure he will be fine. I will be entering on March 16, embo on March 17 and then surgery on March 19. Sad about the cat though…but if we can get pizzas that would be nice Good luck with your son!!!
Hi Andreas,
Recovery–yes, definitely tired and headache for several weeks post-surgery. The one thing I can say with certainty is give yourself the time you need to heal. I went back to work (heavy thinking work) too fast and was very frustrated and exhausted. I also got really depressed which is very common but not something that I was prepared for. I found that I was fighting to make myself well which was fine in the midst of the crisis that started with my bleed but counter-productive after my surgeries. After the surgeries, I needed to learn patience and to be more generous with myself.
Some things that really helped me heal:
-cranio-sacral massage
-engaging my brain in ways that were new:
+I started sculpting using clay – big contrast to academic stuff. Something I could do that didn’t remind me of how I “was” but something I could become.
+I learned how to rock climb. My balance was really wacked out after my surgeries. When I first started climbing, my instincts were all wrong and I had to (re)learn balance. Again, doing something that I hadn’t done before was really helpful.
Also, I had to realize that recovery wasn’t linear–there’d be good days and bad days, ups and downs, but after a while there were more good than bad…
What kind of work do you do? Is there a way to ease back in?
Anyhow, Andreas, like I said, the Barrow and Dr. Spetzler deserve the reputation they have–you’re in good hands. 15 years ago, there was some great miso soup and Mexican seafood near the hospital that my folks brought me (Not from the same place:))–much better than the hospital food, believe me. Any questions or anything, feel free to contact me. Best, Alexis
HI ANDREAS… I’M NEW TO THE SIGHT AND I WENT TO THE BARROW CENTER IN PHOENIX…I SAW DR KRIS SMITH AND HAD GAMMA KNIFE THIS PROCEDURE WAS DONE IN 2005 AND HAD ANGIOGRAM IN 2009 AND 25% HAS GONE… GOOD LUCK!!! MY PRAYER ARE WITH YOU AND REMEBER EVERYONE HERE ARE WITH YOU