We all have a story to tell, and this is mine. This is my journey to conquer Chiari Malformation. I have a story to tell, a journey set before me, and I will fight. I AM A WARRIOR!
I had never even heard of Chiari until around January 20, 2015. My parents and my hubby and I were playing Heads Up, and we were all laughing. My head started hurting, and I said, “I hate when I get these pressure headaches at the back of my skull when I laugh.” My mom said, “That’s not normal.” I told her I always get them.
I’ve been having headaches since I was a child. I remember my mom telling me I was too young to get headaches when I was little, but I’ve lived with headaches and many other symptoms for as long as I can remember. I’ve researched every symptom I’ve ever had, except for the horrible pressure at the base of my skull when I laugh. So, I googled “Pressure at the base of skull when laughing.” The first thing that popped up was Chiari. I researched Chiari further. From what I’ve learned, I’m a walking billboard for Chiari.
Chiari is a disorder in which someone’s brain, the Cerebral Tonsils part, is being pushed through the bottom of their skull through the Foramen Magnum, which in turn compresses the spinal column and brain stem. It s a progressive disorder. There is no cure.
I’ve been in and out of ERs and seen so many doctors who could never figure out why I’m in so much pain. Friends and coworkers talk about me behind my back and say I’m a hypochondriac or “Omg, is she sick again?!?”
One of my symptoms that kind of makes me giggle, well, not really, is my balance issues. My hubby gave me the nickname Ms. Tipsy because I’m always losing my balance, lol. Even my coworkers call me Ms. Tipsy. Over the past 20+ years, I’ve seen neurologists, orthopedic surgeons, psychiatrists, physical therapists, and numerous primary care physicians, trying to get relief from my pain. They have said, “Oh it’s stress” or “migraines” or “tension headaches” or “you should start eating better,” blah, blah, blah.
My neck pain and headache was so bad last night, well heck, most nights, I just laid in bed and cried. No one knows this pain except for the ones living with Chiari and those who haven’t had the right diagnosis yet. I’ve set up an appointment with my PCP so that he can refer me to an NS that I found in my area that treats Chiari.
I have so many symptoms. I’ve made a long a$$ list to show the NS. I’m so glad I googled “Pressure at the base of skull while laughing.” I would have never have heard about Chiari otherwise. That pressure is so horrible. It hurts to touch it. Also, over the years, I’ve learned that when my neck pain gets bad, then I know I will get a severe headache that travels from my neck to my forehead and behind my eyes. I live with dizziness and poor balance EVERY DAY!! I have heart palpitations (Premature Atrial Contractions), numbness and tingling in my hands and feet, insomnia, depression, panic attacks, fatigue, sleep apnea, cervical kyphosis (opposite curvature of the cervical spine), poor memory, and ringing in my ears. When I lay down, I get this pressure in my ears, and I can hear the pounding of my heart. My hearing is getting worse. Sometimes I get this pain in my throat. It’s like this weird pressure. It reminds me of what someone would feel if they were having an allergic reaction, and their throat was closing up. My symptom list goes on and on. Also, I can’t look up or down for more than a minute or I’ll regret it and have severe neck pain for days. That’s a difficult problem to live with.
I’m so thankful that I found this page and a few others like it. It is helping me to better understand Chiari. I’m looking forward to an appointment with an NS. I pray I’ll have answers soon and get some relief.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.