Diagnosed ACM/EDS/TC/HYDROCEPHALUS/SUBCRANEAL INSTABILITY. Two decompression surgeries, second was a full sinus, csf leakage on both, viral meningitis,shunt placement surgery, cranial placement surgery, 11 shunt revisions, staff meningitis, TC surgery, awaiting shunt reintronduction surgery. Glad to be alive.
Hello everyone, a special welcome to all of you new to the UCC site. We are all pioneers of Chiari Awareness in the state of Utah. Everything that is happening in this state to aid and support those of us with Chiari as well as our friends and family members begins here. Everyone who joins this site and are willing to volunteer their time to the establishment of this foundation please become actively involved in watching this site on a daily bases. I need your contact information. It's so important that we get these support groups going, that we get the proclamation for the state of Utah written and signed by the governor, but most importantly signed by as many of us with Chiari as we can find,and it's so important that the UCC becomes an active and legal foundation. Soon this site will be filled with scheduled events, the stories of different Chiarians, and special announcements. I have SO MANY IDEAS and I'd like to see each of them become more than a dream - But a reality,and I want your ideas joined with mine. This isn't about me doing something great, it's about US making life better for Chiari sufferers and their families. WE NEED TO MAKE THIS HAPPEN TOGETHER.
What Is Chiari?
Chiari malformation is an abnormality in the lower part of the brain called the cerebellum. The most common type is the Chiari I malformation (CM). It is also known as Arnold-Chiari malformation, tonsillar herniation or tonsillar ectopia.
What lies behind us and what lies before us are small matters compared to what lies within us. Ralph Waldo Emerson
My Personal Thanks
Thank you, Becky Andrews, LPC, who went through back doors as a therapist to get me to where I could accept myself with Chiari and my future whatever it brings. She is the reason I started blogging, she's the reason I agreed to setting up this Utah Chapter, she's the reason I know I can live even with Chiari and continue forward with a goal to help others. I didn't trust her as a therapist, I didn't believe she could get me to pull things out of myself and talk about them. When I looked at her as a therapist I couldn't, when I believed her to be a friend it was like flowing water.