Chiari - What Is It?
Some days it’s nothing.
Some days it’s everything.
Never heard of it, right?
Neither did I. Chiari malformations don’t make headlines—they make heads split.
Okay, that’s a bad joke. Chiaris are quiet and quirky and present like a hundred other things that don’t seem related so it takes months or years to discover that trouble swallowing, a persistent cough, sleep apnea, and sporadic vertigo are all tied to a creeping cerebellum.
There are four types of Chiari malformations. I don’t know a lot about types 2-4, other than they increase in severity as they go up in number. Type 1 is characterized by a herniation of the cerebellum into the spinal column. My cerebellum (the back, lower part of my brain) for instance, descends 20 mm below where it should comfortably fit within my skull, and is considered a severe case. If I respond to a Chiari post on Reddit, this is how I introduce myself:
Hi, Chiari type 1, 20mm.
The problem with my brain descending where it doesn’t belong is space. My cerebellum obstructs the normal flow of fluids between my brain and body. Any act that strains my head and neck, like coughing, laughing, sneezing, pooping, standing up too fast, or laying down too slow, further obstructs the flow, causing sudden pressure and debilitating pain in the back of my head that I can only describe as being hit at the base of the skull with a hammer. In my case, the increased pressure also causes dizziness, nausea, and eye sensitivity, and less intense symptoms that come and go like tingling/an electrified feeling in my arms, muscle weakness, fatigue, poor coordination, trouble swallowing/choking/coughing and the inability to walk a straight line even stone-cold sober.
Overall, Chiari symptoms are broad and unique to the individual. There are also secondary or complimentary conditions that can coincide with Chiari malformations, which make them exceedingly difficult to diagnose and effectively treat unless your doctor orders an MRI.
Most people who have Chiari malformations never know it. A person can be asymptomatic for years (or forever) or have such mild symptoms that they aren’t traced back to the culprit if they’re investigated at all. Almost anything can be attributed to a Chiari malformation because the blockage it causes affects all parts of the body (here’s looking at you, nerves), extending to mental and emotional issues (hello depression, anxiety, cognitive impairments). This far-reaching affliction may even be hereditary. Though he died before my diagnosis, I’m certain my dad—based on his “ice cream headaches” when he coughed—passed it onto me. I hope I didn’t do the same.
On its own, Chiari type 1 typically isn’t fatal. It can ruin your life though. Sap it of its value. Put you in pain that brings you to your knees, literally begging for death just to make it stop. It can make you walk into walls or choke on rice or become manic, suicidal, and downright crazy. And so, so much more.
Or nothing at all.
I recently learned that there are treatment options for managing symptoms. At the time of my diagnosis in 2016, the only treatment I was offered was decompression surgery, which involved cutting open my skull and inserting a mesh at the back of my brain to give fluids more room to move. As with the medication options available now, the probability of decompression surgery relieving symptoms is highly individual. Since I was told there was only a chance of some relief if I went under the knife, I declined, and have spent the last eight years exploring alternate methods, therapies, and lifestyle changes to live (mostly) Chiari free.