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Comment by Tony L Sydney yesterday

Hello SoCal subgroup. Just dropped in to let you know that Brett D is celebrating a birthday. He must be getting old now!

Comment by lavegan248 on Thursday

hi debra: thanks for suggesting that i join this group... i really appreciate it... i do live in los angeles. i do have an avm... in the area near where my speech is controlled... and when i have a seizure, my speech goes.. i'm totally conscious but i can't speak at all. i haven't had an operation because it is pretty dangerous given the place where it is in the brain... my episodes are called a simple partial absence seizures.. my neurologist is at ucla. we just raised the medications to 4500 mg per day keppra xr... they were just raised 2 weeks ago from 4000 mg keppra xr... i was having small episodes about once a month... but we are trying to control them completely... i've tried many other drugs... and had horrible side effects that i couldn't tolerate... keppra xr seems to be the one that works the best for me but not completely... it does make me drowsy, though... hopefully this will work.... i've been on this journey, for about 6 years when we discovered this... i thought i would try to connect with others who are going through this... i haven't really reached out before...

Comment by Tony L Sydney on April 22, 2013 at 3:37pm

Hey you lovely SoCal people! Thank you so much for making JLo's and my honeymoon so special, at the meet up. Quick reminder that your buddy Jake M is celebrating his birthday.

Comment by Sean T (Wife: Sallie T) on April 11, 2013 at 5:09pm

Wondering if there are any LB AVM support group events coming up?

Moderator Comment by Debra on March 27, 2013 at 12:45pm

@SynerVine - Can you repost your comment? It didn't appear on the page. Thx.

Moderator Comment by Debra on March 27, 2013 at 12:44pm

@Firebuddy- the pictures are on Facebook (you know we are all techy here). I will save the pics to my phone and then post them here later. I completely agree with your beautiful sentiments about southern california. Always love having an AVM meet up, plenty of laughs, sometimes tears and new friendships made. There will definitely be another one in the summer. Just not sure where as of yet:-)

Comment by Fire Buddy on March 27, 2013 at 11:49am

Okay, where are the pictures???? We had a great time in Anaheim on Monday night. We welcomed two "new" Survivors who had not previously met another Survivor, including Mike, who underwent Gamma Knife some 20 years ago. WOW, that really underscores the value of Ben's work and the purpose of this site. NOBODY should have to go through the AVM experience alone. We also enjoyed Jaz' arrival in California. She seems to be enjoying the "Cali" lifestyle. Tony and Jenny were the focal point of our Get Together and it was an absolute pleasure to visit with them. The Newlyweds will soon be home in the Sydney area of Australia, but they graciously left a part of themselves here with us. :-)

A special thanks to Debra for coordinating the event and making the arrangements with Mimi's Cafe. If you haven't taken the time to get to know her, you are missing one of life's treasures!

Our little SoCal "Family" has grown to be a comfortable group and we fell back into our conversations and relationships as though no time had passed since we last met. What a great group!

Mike
(Fire Buddy)

Comment by Heidi on December 23, 2012 at 2:28am

A year and a few months after treatment I got terrible headaches and my right leg tingled. I did not clue in that this was a symptom...late stage radiation brain swelling. I let this go on for about 3 months, probably not thinking right due to the brain swelling! I was put on huge dose of steroids which was awful. I also eventually got hyperbaric oxygen treatments. I still have some loss of feeling, foot drop, use an AVO brace and cannot tell where my right foot is, so I cannot drive at age 41. But I just ordered a portable left foot accelerator. So I should be driving sometime in early to mid-January. This makes me feel hopeful and great!

Moderator Comment by Debra on December 7, 2012 at 12:15am

That would be great Jake. Feel free to invite anyone you know, AVM or otherwise. Hope you are having a good holiday season.

Moderator Comment by Debra on December 7, 2012 at 12:14am

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