I was diagnosed with Scoliosis when I was 8-years-old. Within one year it became very severe, too severe for a brace. I had an MRI and they found that I had Chiari I Malformation and Syringomyelia (a cyst or “bubble” of fluid in the spinal cord). I had my first decompression surgery when I was 9-years-old. It didn’t work, my stent got clogged, and I developed hydrocephalus (water on the brain). I had surgery again 9 months later.
One thing I wish people would understand about Chiari: It does not make you disabled. I have had six more operations for other things (two for my Scoliosis) since then. I graduated from high school with high honors as a member of the National Honor Society. I was involved in clubs. I play the piano. I have friends. One year later, I am a college student at the University of Massachusetts in Amherst going in to my sophomore year.
Yes. Chiari is challenging. It’s shitty. I have pain every single day. It’s very severe at times. Has that stopped me from achieving my goals? So far, no. Chiari has not disabled me. In fact, if anything, Chiari has abled me. I used Chiari, Scoliosis, etc. as fuel for my fire.
I know the pain everyone in this tag feels. I feel it every day. Just remember one thing: Chiari may hinder you physically, but do not let it hinder you mentally, emotionally, and/or spiritually.
I hope my words help anyone who may be reading this. Just remember your diagnosis isn’t the end of your life. I’ve been dealing with this diagnosis for 10 years. You can still live an amazing, fulfulling life with Chiari. Believe me! :]