No Longer Just Surviving: Chiari Malformation Surgery Produces Better Days

I think it’s pretty fitting that I’m writing this post on the day I pick up my cap and gown for my college graduation. Receiving a college degree in four years is near the top of a long list of things I never thought I would be able to do. Being a college student is difficult enough especially one majoring in biology with graduate school aspirations, but as an added challenge I have a rare, congenital brain defect called Chiari Malformation.

In Chiari Malformation the cerebellum protrudes into my spinal column, producing pressure, and causing a myriad of debilitating symptoms. For me these symptoms were daily headaches, dizziness, blackouts, pain and numbness in my arms, legs, hands and feet, difficulty swallowing, extreme pain in my back, neck, and shoulders, fatigue, and cognitive and behavioral issues.

I was diagnosed in 2005 at the age of twelve. My Chiari was found incidentally. I had gone in for a routine eye exam with complaints of double vision and left with an MRI order. A few weeks later at the follow-up appointment I learned my diagnosis and began the marathon that would be my life for the next seven years. I was referred to a neurosurgeon who insisted I needed surgery (one of the most common treatments for Chiari Malformation is a decompression surgery in which parts of the skull and/or first vertebrae and/or dura mater are removed to allow more room for the brain in hopes of relieving pressure) as soon as possible, but luckily my family opted for a second opinion. Unfortunately, this is the day we learned that in the world of Chiari Malformation, no one is really sure about anything—there is no universal diagnostic criteria for Chiari and there is no universal treatment. After the second opinion, I was labelled as a patient ineligible for surgery. At the time this meant that my Chiari wasn’t symptomatic and wouldn’t require treatment. However, this wouldn’t last long as my condition started to deteriorate quickly. I went from no symptoms to over ten in less than five years. I went from a happy, athletic teenager to essentially a zombie, floating through life exhausted and in pain.

I couldn’t even walk up a flight of stairs without passing out. In the midst of all this, I was being told by doctors that my symptoms weren’t due to my Chiari. For the next few years I tried what felt like a million different cocktails of medication and rounds of physical therapy to try and relieve my symptoms. With my 18th birthday came my high school graduation and graduation to an adult neurologist. Finally, I had a doctor who validated my feelings and symptoms and wanted to help me get better. I was referred to a neurosurgeon (one of the four I had seen previously) who finally agreed to perform surgery when I “couldn’t take it anymore.” I went off to college and by February of my freshman year I made the incredibly difficult decision to have surgery at the end of the academic year. I had my decompression surgery on May 17, 2012 and immediately started feeling better.

After three nights in the hospital, only one of those was in ICU, I was on my way home and on the long road to recovery. It took about a year to fully recuperate due to some poor decisions including not going through physical therapy right away and returning to college only three months after surgery. But, after all that I’m unbelievably lucky to say that I’m among the 20-30% of Chiari patients who improve significantly after surgery and I no longer need medication to manage my symptoms.

I still struggle with my Chiari daily, but now I feel like I’m living not just surviving.

Throughout my whole experience I’ve learned two things: it is what it is and never give up. There isn’t a whole lot that I can do to change my situation; there is no cure for Chiari and the treatments aren’t the best. What I can do, however, is control how I react to my situation. I spent a lot of time wishing for my “old life” back, but eventually I realized that the only thing I could do was accept my new normal. One of my favorite quotes is by W. Mitchell; “Before all this happened to me, there were 10,000 things I could do. Now there are 9,000. I could spend the rest of my life dwelling on the 1,000 that I lost, but I choose to focus on the 9,000 that are left.”

I’m incredibly lucky to have had a successful surgery and recovery. Since then, I’ve been given two years of good days to focus on my 9,000—two years that have been lived each day at a time with an appreciation for every moment because it could all be taken away from me again. I’ve had two years to try my best in college, make plans for graduate school in genetic counseling, and win Miss Winona, a local title for the Miss America Organization where I can use my experiences to raise awareness for rare diseases. I’ve had two years in which every minute has been filled with an intense love for life and for the first time in a long time a feeling of peace.