Hi, My name is Brenda,I was diagnosed with Chiari Malformation back in 1986. There wasn`t very much known about this condition then, and no where to go to find out.I had a number of different things going on over the years and a lot of pain just to be told like most other chiarians that "These problems are not related".When your told this repeatedly you begin to think it is all in your head.Then after a while your so used to being in pain and having these other problems all the time, you forget what it was like before so it all almost feels normal to you.
Then in 1998 after a few bouts of a pain that felt like a hot poker being laid between my shoulder blades my medical DR. referred me back to my Neurologist who finally sent me for my 2nd MRI since 1986 we found that I had now developed a syrinx.along with 7 bone spurs a buldging disc and spina bifida occulta.He still didn`t think I needed surgery.That`s when after searching the web I found 3 web sites.I now know im not the only one,it`s not all in my head, and no it is not normal to feel this way.These sites are Chiari Information Exchange( no longer exsits), World Arnold Chiari Malformation Assoc.,and American Syringomyelia Alliance Project Links to these sites can be found on page 2.Since I found them in Oct. of 1998 I found a neurosurgeon and had my surgery on Feb.3rd 1999.After all those years of not knowing what to do,I wanted to do something so that no one else would ever go looking for information and not be able to find it.I hope this site will help some of them! I dedicate this site to my mother Ann who fought so hard and cut through so much red tape for me so I could have my surgery by the DR. we new would be the best,only for me to lose her 2 months to the day of being released from the hospital.To her I dedicate this page and the rest of my life.
chiari malformation,syringomyelia,spina bifida occulta,chronic pain,chronic fatigue.
I LOVE YOU MOM :(
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Email: chiarism@comcast.net
