Carries Chiari Connection

Click http://www.carrieschiariconnection.com/eventsandreviews.htm to learn of the new events planned for 2008!

     I was beginning to wonder what it is I am doing here.  I was beginning to feel complete frustration and then the letter from Governor Strickland's office came to me.  It woke me up again to realize that my goals from the very beginning was to raise awareness because there were so many people along the way that showed frustration because Chiari was so "rare".  Yet we read on the websites where information is available, Chiari was once known as a rare condition but through MRI's it is more frequently diagnosed.  I can visit one website that says Chiari is so rare and so unfamililiar and go to another and see that Chiari is better known, but through my personal experience I have found that Chiari is out there everywhere!  The problem is that it's out there in so many homes but not in the public eye and definately not in our local doctors offices. 

When I was diagnosed with Chiari, neither my doctor or my nurse knew what it was.  How could they possibly ensure my well-being if they didn't understand what was wrong with me.  Of course I was sent to a neurosurgeon that supposely knew more than the average Joe.  My first visit with the neuro left me frustrated because he only wanted to talk about my herniated disc.  Before my husband and I left we filled his ears with all the symptoms I was experiencing and he decided to have us come back after having a CINE study and a complete brain MRI.  The second visit he spoke of nothing else but my Chiari and said that my CSF was diminishing and it was my decision at this point as to whether I had the surgery or not.  I was told that my herniation was 10-11 mm but it was not relevant as to the size.  I did not have SM and in my opinion, I figured I would try everything else before I had surgery.  So I was scheduled to have facet block injections and radio frequency procedure done to my cervical spine, since this was one of my major complaints.  The pain in my neck had been so severe that I was unable to move it quite often and still had to work, to me pain was not an option. 

The procedure, I cannot say was completely unsuccessful but I still continue to have pain and since then have been put on many different pain relievers.  I am now on Opana and I believe that the combination of Opana and the procedure and also my way of living has contributed to me being able to function for the most part.

Anyways, before I lose the point of what I am writing about, I have felt from the very beginning that no doctors knew enough to completely understand my symptoms and my disorder.  Still to this day I cannot say which symptom is for sure related to my Chiari.  I can only gather information (as I try to do on my website) and compare myself to the other Chiarians who either share my symptoms or don't.  I cannot be simply happy to live with the fact that my future carries so many uncertainties.  It is my responsibility to understand my health and my conditions and with that said, there is no other way than to continuously talk to people about Chiari, educate doctor offices and facilities, and get as much awareness out there as possible.  This is my life, I can either choose to wait around for someone to come to me and explain my condition and what it means for my future or I can stand up and be a voice for myself and for other Chiarians.  I choose to be in control of my life and be as active as possible in the future of educating our medical fields and our communities.

Please join in the community of raising awareness for Chiari...it is your right to be aware and have a better understanding and to share it with the world!

I developed this site to help connect chiarians and their symptoms along with geographics and personal information to build a data base that I hope will be used in the future to understand our disorder.  Any information that you choose to share will be public information. 

 Ray D'Alonzo's book:  "Contents Under Pressure" which you can purchase through http://books.lulu.com/content/174364

http://www.freewebs.com/matthewschiari/index.htm

http://www.conquerchiari.org/index.htm

http://www.chiariconnectioninternational.com/

http://www.northshorelij.com/body.cfm?ID=6407

http://www.pressenter.com/~wacma/

If you would like to contact me personally my email address is:  carriebear31@msn.com.  I also have a myspace if you would like to know me more on a personal level: myspace.com/carriebear35 .