Breaking My Silence on Chiari

As the month of September comes to a close, I realize another year has passed that I haven’t vocalized my lifelong struggle of managing a chronic condition that really only an MRI can diagnose and see. September was Chiari Awareness month, and as I continue to struggle with this condition with no end or relief in sight, I wanted to break my silence and help educate others on what Chiari is and how to help the 1 in 1,000 people who have this condition in the workplace.   

Clinically defined, Chiari Malformation is structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. This may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal. This causes pressure on the cerebellum and brain stem that blocks the flow of cerebrospinal fluid that surrounds and cushions the brain and spinal cord, which is also responsible for circulating nutrients and chemicals filtered from the blood and removes waste products from the brain.

More simply put there is not enough room for your brain. The side effects include neck and back pain, memory loss, migraines, headaches, depression, dizziness, hearing and balance problems, and scoliosis. These are just a few of my favorite I’ve come to manage myself. People with Chiari live on a spectrum of these symptoms, oftentimes undiagnosed or left navigating the medical field with doctors asking them to repeat or spell C-H-I-A-R-I. For years, it felt like no one could help me. Excedrin would be my best friend, sprinkling a few tablets in every clutch, pocket or wallet for when an episode would kick in.

At 21, I was formally diagnosed after getting an MRI. There it was on the screen my lower brain pinched between both sides of my skull, the cause of all the tension I would describe to doctors who wouldn’t take me seriously. There was the answer I searched to explain my blackouts, loss of vision and fainting, all caused by intermittent moments of a lack of blood and oxygen getting to the brain. Being crazy was finally ruled out. Unfortunately, even the doctors at Mass General didn't have a playbook for what to do post-diagnosis. They referred me to PT. Since then I’ve tried it all to find relief in massages, acupuncture, physical therapy, yoga, and stretches. On top of the thousands of dollars spent on those services, are the hundreds spent on random gadgets and gizmos on Amazon promising relief. 

Thankfully, Weill Cornell's Brain and Spine Center specializes in Chiari and I finally received answers and hope for how to live the rest of my life with this. When you have Chiari you don’t have many options, but one is decompression surgery, in which they remove part of your skull to create more room. There are no guarantees, but there have been successful outcomes. You’re otherwise left with just some good ol’ pain management and avoiding situations that can physically do more harm as your lower brain is left exposed. No more roller coasters and no more riding without a helmet.

Chiari is one of the many illnesses that don’t present physical signs. So when a friend says they don’t feel well, or an employee says they’re struggling with a headache or migraine, try to be understanding. I recognize that I can be one tough cookie, but these symptoms can leave even me debilitated for hours with what feels like the worst hangover of your life, coupled with throbbing back pain. Chronic conditions can lead to depression, which I have to navigate and manage every day. A network of friends, doctors, and others with Chiari provides me with so much support and hope that makes every day possible. The real struggle for me is accepting that I’m not in control of when I’ll have a good day or a bad day. I can only control my outlook on the matter. Those moments of pain remind me that I’m alive, that I can feel and that everything good and bad shall pass and to be grateful for even the present moment. 

For more information on Chiari visit the Weill Cornell Brain and Spine Center. On a lighter note watch this quick video to become enlightened on Chiari.