Chiari Malformation Awareness Month

Yesterday I started Neuro Rehab. Three hours a day dedicated to learning to manage these leftover symptoms. How fitting is it that I started on the first day of Chiari Awareness Month and that it also falls on the same month as my birthday?

So, now it’s Chiari Malformation Awareness Month. That special time of year where I will inundate Facebook with my daily facts, in an effort to help those who know me learn a little more about this little known disorder.

Chiari is a condition where brain tissue from the cerebellum extends too far into the spinal canal. Usually, as in my case, it is a birth defect, but it is often not discovered until later in life, on an MRI. It is often asymptomatic, but can just as often cause very extreme symptoms, as it does in my case. Symptoms include headaches, neck pain, coordination issues, dizziness, vision, voice and throat problems and various complications that can arise. In my case, my autonomic nervous system went haywire due to the growth blocking my CSF flow, resulting in heart and breathing issues, just to name a few.

As many of you know, I was fortunate enough to stop the progression of my symptoms after undergoing brain surgery in January. This procedure had a gigantic and mostly positive impact on my life. However, it’s not over.

Chiari is a lifelong, incurable condition. Surgery can be extremely helpful for some people, and for the most part carries few risks, but is not a cure. Many develop new symptoms, or need repeat surgeries.

Because of this, I am determined to submerge myself in trying every possible method of management. Not just to become stronger but I think also in hopes of some never before seen remission. It could happen.

In the meantime, I believe it’s so important to raise awareness about Chiari. It may not be well known or extremely talked about, but it is more common than you think, and what the Chiarians in your life could use is awareness and support. Each day with this illness is a battle, but I am convinced that if I work hard enough, I can keep repeat surgeries at bay, advocate for others and find the teachable moments in it, both for myself and for those around me.

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