September is Chiari Malformation Awareness month, yippee. Chiari doesn’t need to make itself anymore aware in my world. It’s right there in my face screaming, “look at me, look at me!” According to the National Institute of Neurological Disorders, Chiari Malformations are structural defects in the base of the skull and cerebellum. Chiari Malformation develops when part of the skull is smaller than normal or misshapen, forcing the cerebellum to be pushed into the foraman magnum and spinal canal. This causes pressure on the cerebellum and brain stem which often impacts the functions controlled by these areas and blocks the flow of cerebrospinal fluid. Sounds like a lot of fun, right? In more simplified terms, Chiari is a life wrecking, happiness stealing, vertigo, nausea, and misery causing pain in the ass...or should I say, pain in the head. So-called experts can say all they want about Chiari but until you are living it, feeling it, struggling through it, you can't even begin to imagine the hellish fury it wreaks on one's life. Chiari has flipped my world upside down, and no, hanging upside down will not make your brain go back to where it should be, and yes, I've tried.
Chiari can bring forth any number of symptoms, with every new day bringing on something new. Telling anyone who is not familiar with Chiari, medical professionals included, what some of the symptoms are often leads to people thinking Chiarian's are hypochondriacs or that we are exaggerating. This is so far from accurate! I can only speak to my own experiences, but I am certain this is true for more than just myself. My most common symptom and my #2 least favorite, is the Chiari headache. By far, it is worse than any headache I have ever experienced. It’s pain at the base of my skull and is referred to as an "occipital headache," by my neurologist. I am not exaggerating when I tell you the pain goes all the way through my skull into my brain itself. While experiencing a Chiari headache the lights hurt my eyes and sounds become too much for me to process. Almost as if everything I hear is amplified and echoing. My neck pain is constant; however, worse when I have a headache. Brain fog and memory issues often accompany my headaches. For example, just the other day I came up with 3 different names for a cabinet because I just couldn't think of the right one. Very frustrating.
Everyday I have some level of discomfort, whether it’s a headache or neck ache. There is not one day that I can recall in the past 3 years that I have not felt some level of pain. Sadly, I am learning to adapt to this new normal and have been able to somewhat modify my activities and lifestyle. For example, I take shorter drives and avoid the interstate whenever possible. I carry Biofreeze as if it has some magical healing power and never leave the house without it. I began physical therapy to learn how to strengthen my neck, and avoid tasks that could cause my neck unnecessary strain. I still take on way more than I should knowing I will pay for it later. I am learning to ask for help, admit when I am defeated, and most importantly learning to give myself a break. I have a long road ahead of me as there is no cure for Chiari. Decompression surgery is likely something I will face one day; however, it is not a cure nor is it a guarantee that it will improve my quality of life. So for now, while my head is pounding for the 14th day straight and my neck is feeling like its on fire, I will continue to make the best of a crappy situation, pop some Excedrin, slap on an ice pack, and show up for myself and the people I love, headache or not.