Scoliosis and Chiari

As a parent, I enjoy hearing how my children are growing each time we go to the pediatrician for checkups. Except for Matthew's failing health early in life due to the Chiari Malformation, the experience has always been positive, they are getting taller and gaining weight.

I attended elementary school in a small town of about 350 people. The school housed all grades, Kindergarten through 12th. In the 4th grade we had medical evaluations to test our vision, hearing, motor skills, bone density, etc. I clearly remember them also doing a screening on each child for Scoliosis. I was sent home with a note saying I had a very mild case of this condition.

I have not really even thought about that "diagnosis" again until last year when I had a full physical. So I step on the scale, my weight loss journey continues... But then it was time to measure my height, I heard her say 5' even. I stepped down shaking my head and told her I am 5'2" so she agreed to check again, 5' even. I wanted to argue but had nothing but a WV driver's license to explain to this nurse that I have been 5'2" since high school.

Needless to say, I was stuck on that point but proceeded with the rest of the physical waiting for the Doctor to pause so that I could ask what this meant. He seemed shocked too, 2" is alot of difference. He checked my spine and knew immediately what has happened.

I have Scoliosis. Over the last several years I have slowly lost 2" in height. So, knowing the condition my son has, I started searching and sure enough there is a link between Scoliosis and Chiari.

Now, we know I have Scoliosis and we know that Matthew has a Chiari Malformation however it is still not known just how they are linked. So far, Matthew has not been diagnosed with Scoliosis. The exact cause of Chiari is still not known but there is a strong opinion that it is congenital. When Matthew was first diagnosed I asked the neurologist if it was wise/necessary to have myself, other family members and children scanned. Because I had become so familiar with the presenting symptoms of Chiari, I personally could rule all of us out, at least at the present time and the neurologist's opinion was to only test if the symptoms were there. However, discovering this link between Scoliosis and Chiari recently, I am again contemplating scans for the family. This information would be dual purposed, to ease my mind and to present the findings for further research to either support or refute the connection of these conditions to genetics.

Everyday I learn more about Matthew's condition. We have so much more research to do and we must press on to raise funding, awareness and education for this condition.