September is Chairi Malformation Awareness Month

Poem of Chiari

Hi. You don't know me, but my name is Chiari. I am a malformation of the skull that forces a portion of your brain down into your neck, the cerebral tonsils to be exact. There is no cure for me and meds are all but useless most days. The only thing you can do about me is have a surgery called posterior fossa decompression where they remove a piece of your skull. Sometimes they even have to cauterize off part of your brain.
I cause a host of symptoms, some estimate them at over 100. My symptoms can range from mild and manageable to life altering and devastating. Pain is something I give freely, sometimes in interesting ways. I ravage not just your body but your mind. I care not if you're male or female, young nor old. In most every case I've been with you since birth, just no one knows to look for me. Others get blamed for all the misery I cause.
Most doctors know very little about me and dismiss me constantly. Leaving me free to wreak havoc on your life. Good luck finding one who knows me and will believe you. Many times, you'll be left to navigate me alone. I will challenge you and leave you desperate for help. Given the chance I will change your life for the worst, sometimes I'll take that life completely.
I don't always travel alone. There are often other conditions found along with me, like Ehlers Danlos, Postural Orthostatic Tachycardia Syndrome, Idiopathic Intracranial Hypertension, Hydrocephalus, Empty Sella Syndrome, and more. It's good to have friends, though I will happily make yours disappear. Friends tend to fall by the wayside with me around.
Again, my name is Chiari Malformation, some call me Arnold Chiari Malformation. And I'm here to ruin your life and riddle you with pain.