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Here we go

Four weeks ago I was diagnosed with Chiari Malformation.  Chiari is a brain disease which causes the brain to grow out of the skull. Symptoms include headaches, slurred speech, fatigue, foggy head, vertigo, and lack of depth perception.  I am lucky because my symptoms are not as bad as others  but the symptoms I do have are occurring more frequently.  

Understand, this is not life threatening but it is life changing. I was born with Chiari and the symptoms tend to increase with age or a blunt blow to the head. I suffered a concussion a year ago which may have caused my brain to shift further down which got my Chiari party started. My malformation is 16mm which is on the large side. 

Amy and I spent the first week researching and defining Chiari to our inner circle. The reason for this post is to find others who are experiencing Chiari. I would love to hear from you. It is so rare that the ability to reach out to those who are struggling would be helpful to me and my family.

We started a message board called http://arkansaschiari.boardhost.com/index.php. Please pass it on to a friend because I am convinced if you dig deep enough you will find a person who suffers from this condition.

This blog will cover Chiari news,events, and information. I am not comfortable keeping a personal diary of my  ups and downs so this will be the last time I post anything personal about my condition.

I wanna thank the guys on the show and the management at Cumulus. Wally, Richard, Bill, Nate Olsen, and Mike Irwin have been nothing but understanding and are bailing  me out when my speech starts going South.

The mental component of this condition is the reason for me coming out. I wanted to wait till the timing was right before talking about it and if it wasnt  for the lonely feeling this condition causes then I would remain private.  My wife has been a miracle in her research and that is the reason for being open. We want and need to hear from people who can share their experience. It is emotionally draining on family members because they want to help yet don’t know how. It is also exhausting for those with Chiari because we appear normal yet we walk around feeling and knowing something is out of balance.

 Chiari patients who have brain decompression surgery are called Zipperheads. We would love to hear from Arkansas Zipperheads. Again, please visit our message board and educate those who are walking down your road. 

http://arkansaschiari.boardhost.com/index.php.

Pass it on!

Shawn

Welcome

This blog/message board is a place for those with  Chiari to discuss their symptoms. Chiari can be a lonely thing so it is important for those diagnosed research and find a place where they share what they are feeling.  We are also responsible to educate our family and help them cope with what we are dealing with so please understand this is not a cheesy board filled with depressing shiznit. This is a board searching for those who have been diagnosed and asking them to share their story.

Though all Chari’s are asked to participate our goal is to find those in Arkansas with this disorder.  Please pass this on to a friend and ask them to pass it on to a friend. Our message board is our  goal. Please help.

 

Shawn

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