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.

Filed Under: Insights, Patient Stories

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Global Genes Comments

  1. We have been trying for years to get her the surgery ,but no luck yet. She is no 11 mm herniated. Anyone with any advice please share. THANKS

    • Hi Justin, mine was at 11mm when I had my surgery. I also had a syrinx, which caused me to be in the ICU for 10 days not one like the story. My dr, was Paul Holman at Methodist hospital in Houston, he is also the surgeon for the Houston Texans and has performed thousands of surgeries. They have multiple ways to help you work with financial issues. Hope this helps

  2. My wife has chiaroscuro and needs the surgery. I hate seeing her in constant pain. We cannot afford the surgery or good insurance. We live in Texas. Does anyone know of a way to get her the surgery she needs?

  3. my daughter may be having the chiari surgery, she is 17. will it leave the base of the head vulnerable?

    • I had decompression surgery 3 months ago and the top two vertebrae were removed. My surgeon said it’s not something to worry about. Just be a little more careful. I.e. don’t play football 🙂

  4. Our stories are so similar! I was also lucky enough to have a successful decompression surgery for my Chiari, and even though I do still have symptoms, my quality of life is so so much better, it’s been 15 years TODAY since my surgery! Thank you so much for sharing your journey!

    • Not everyone is the same, I still have those symptoms and my surgery was in 2011. The main thing my doctor told me when I went it, now this probably wont fix your symptoms, it’s strictly a life saving surgery..

  5. Allie Jesmain says:

    I was diagnosed with Chiari malformation over 18 years ago. I am almost 41 years old and my symptoms have greatly progressed over the past 2 years. Besides the insomnia, headaches and extreme neck pain, 2 of my worst symptoms are blackouts and not being able to laugh because it feels like my head is going to explode. I live in Fort Worth, Texas and there is no one around here that specializes in Chiari. I will be taking a chance with this surgery but I am completely miserable. I will be driving down the street and know where I am and where I’m going but forget how to get there and I have to pull over and wait until I remember. Weirdest thing.

  6. ann miller says:

    Can you recommend a surgeon
    its crazy I cannot find a “list” of surgeons who have successfully done a c1-c2 fusion or correction on the web. need some experienced input!

  7. Would love to get you involved with the Chiari & Syringomyelia Foundation ( Congratulations on your graduation and I’m so happy to hear you have been having success. My son graduates next year from college after many issues with these disorders. Thanks, Cathy

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