My name is Dia DiCristino. In November 2002 I was diagnosed with an arachnoid cyst which later caused me to have hydrocephalus (water on the brain). I had to have 11 brain surgeries and in total nearly 25 neurological surgeries for these two things. Even after all of my surgeries in 2003/2004/2005 I still had symptoms. Some would wax and wane, and the doctors could never agree on why these things were happening. One neurologist believed my arachnoid cyst, in the basal ganglia area, was killing off upper motor neurons, but many of the neurosurgeons disagreed with this theory. To be caught in the middle of two doctors bickering back and forth doesn't help at all!
In 2003 the Arachnoid Cyst Awareness Organization was founded with the idea to help end the stigma of "it's all in your head" and also to bring as much information to anyone dealing with an arachnoid cyst, as possible. In 2010 ACA Organization started an arachnoid cyst petition which received over 1,000 signatures from people all over the world all complaining of the same thing; their doctor not taking them seriously! I have personally spoken with over the years hundreds and hundreds of people who have had MRIs and CT scans that did indeed detect an arachnoid cyst, but for whatever reason that detection went ignored, and years later they eventually found out about the diagnosis. For those reasons and more, ACA Orginzation offers this support. The 2010 International Arachnoid Cyst Awareness Organization Conference brought together world renowned neurosurgeon, Dr Leslie Sutton with patients and family members of patients to discuss all aspects of what it is like to have an arachnoid cyst. For more information on this please check out the ACA Network:
http://arachnoidcystnetwork.com/acanetwork/
The latest thing ACA has been doing is hosting virtual parties. Especially around the holiday season, if you can't get out of the house, it is nice to know you are not alone, and that you can participate in a party! This New Year's Eve at 9pm EST we will be ringing in the new year in our ACA Karaoke chat room here http://arachnoidcyst1.com/acakaraoke and ACA would like to invite you to come and join in the fun. To see an example of what happens at these parties please look at the video of our Christmas virtual 2010 party: http://www.facebook.com/video/video.php?v=468001026539&oid=289181977276&...
Happy Holidays to you,
Your friend,
Dia
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Dia - Thanks for the invitation to what sounds like a wonderful party and great way to welcome the new year! Your support organization is such a valuable service for those with arachnoid cysts and for caregivers, and I hope you have a fantastic turnout! Please let us know how it goes, and here's to a great new year for all of us in 2011!
December 21, 2010 - 6:20pmPat
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