I was diagnosed with Arnold Chiari Malformation when I was 12 years old in 1998 on a fluke...
My middle school conducted mandatory scoliosis screenings in gym class and of course I was one of the only students pulled aside to be told I had a severely crooked spine. I was so embarrassed to be one of the only kids with scoliosis (because middle-schoolers are so concerned about their social status, ha!), but I had no idea that this random discovery was saving me from years of pain and discomfort down the road. Since my spinal curve was so severe, my doctor suggested I have an MRI. From the screening they discovered I had severed spinal fluid build-up (from Arnold Chiari Malformation) which was causing my spine to curve.

My first decompression surgery went well. Recovery lasted only 3-weeks before I was back in school; I suppose children are pretty resilient. I never experienced any negative symptoms besides soreness, but during my six-month check-up with my neurosurgeon he discovered that my CSF had begun to build up again.

After my second decompression my surgeon was very concerned about the instability in my spine. Since a large portion of the spinal column (from c-2 to t-1) had been removed, I was told that my neck was very fragile and any rough act could result in me breaking my neck.

Therefore, my surgeon decided to perform a spinal fusion on the length of my spine that had been operated. I now have two metal rods, 20 screws, and bone grafts that have transformed my once flexible neck into one solid, stiff structure.

From the surgery my neck movement has decreased by over 50% (I can no longer look down and see my belly button), but I have gotten used to it. I am now 28 years old and still symptom-free.

I'm sure there were a lot more specific details concerning my operations, but I was young and didn't fully understand the scope of what I was dealing with.

I often wonder if I didn't have the spinal fusion to stabilize my neck if I would be having headaches and pain associated with the decompression surgery. Maybe the stabilization of a neck of severed muscles is solution to a pain-free recovery later in life. I don't know?

My suggestion to parents with children in middle school: Make sure your kids get screened for scoliosis!!!