Conquering Chiari: Connor Ventura

Connor was a 15-year-old high school student when he was diagnosed with a severe Chiari Malformation. Here is his story.

My Chiari Comeback

I was unaware that I was born with a rare brain condition called Arnold Chiari Malformation.

On December 8, 2009, I experienced concussion-like symptoms during a soccer game and was sent to the hospital. The MRI indicated that I had a severe Chiari malformation. I underwent brain decompression surgery at The Weill Cornell Brain and Spine Center at New York Presbyterian Hospital on December 21, 2009. Dr. Jeffrey Greenfield expanded my skull, and I now have a five-inch scar that looks like a zipper on the back of my head.

Each time I have a checkup, I realize how extremely lucky I am. With the support of my doctors, the guidance of my physical therapist at Pro Activity and the understanding of my soccer coaches at PDA, my recovery exceeded everyone's timeline and I was back on the field in no time. I started my senior year of high school in September 2011 as the captain of my soccer team. Since I wasn't planning to play soccer at the college level, I knew it would be my final year of playing competitively, so I enjoyed every minute of it!

If you would like to hear more about my story, watch my video here.

I am very lucky and hope to be an inspiration for all the kids out there who struggle with Chiari. Unfortunately, there are very little funds directed towards Chiari awareness and research. Please help us make more kids and parents aware of this treatable disease so they are able to return to a healthy life like I did. Please click on this link to help us save kids' lives. Thank you!

(Connor's mom tells her story here: A Chiari Parent Perspective)


Weill Cornell Medicine Neurological Surgery 525 East 68 Street, Box 99 New York, NY 10065 Phone: 866-426-7787