I'd literally spent my entire life wondering what was wrong with me. As a child I tried as hard as I could to be organized, like my friends were. Their clean, neat desks and backpacks used to amaze me. Why couldn't I do the same thing? Why was simple tasking so hard for me? Why would I read the same page 5 times before I'd even notice? Even then, the words would go in, but miss the processing needed to comprehend and retain it. I would try to speak a word, but forget it before it would hit my lips. My brain knew what I was trying to say, but my mouth just wouldn’t cooperate. It’s almost like a disconnect. I can see and hear the words in my head- they just won’t come out. I carried around enormous guilt, assuming I was simply lazier than my friends. Maybe I was just not as smart as they were? What never made sense was -why on some days I was sharp as a tack, full of wit, savvy and remarkable organization skill, while most other days I couldn‘t assemble a 10 piece puzzle if it would‘ve saved my life.
This dreaded condition named Chiari is made so much more torturous by its teasing ways- It’ll allow you to know your full potential just long enough to yank it out from under you with the blink of an eye, or a literal sneeze. My very own brain feels violated by my own brain.
I would have similar problems with my vision. I could and couldn’t see all at the same time. Sound crazy? I swear it’s true. I couldn’t explain it as a child (which was maddening), but all I knew was that my vision was very “wrong”. I could see, but my brain just didn’t process what it saw. I knew that my eyeballs were working, but I couldn’t explain that, and regardless, I still couldn’t see.
Of course, back then, I couldn't articulate these thoughts. I just knew something was very different about me and it hurt and scared me. Aside from these torturous cognitive problems, I was also very ill. I was the kid who never felt well as a teen. I had headaches and neck pain, that was so common I took it for “normal”. I know that sounds odd, but I just accepted that anytime I wore a necklace or halter top, I would pay for it with a headache that could kill a horse. People with congenital Arnold Chiari Malformation don’t really know “normal”. All we have are our good days, bad days and known triggers. A painless, astute and coordinated day is a trifecta akin to scoring a real unicorn from your birthday candle wish. It just doesn’t happen, no matter how hard we wish it.
I spent my late teens and twenties chronically ill with severe fatigue, generalized malaise, dizziness, headaches. I went to dozens of different doctors and specialists from age 15 on. I was told I had everything from mono, to chronic fatigue syndrome, to “you’re too tired (no kidding!) take a nap”, to the typical PMS label, and of course, the standard “you have anxiety and depression”. I don’t know a person with Chiari who hasn’t been issued a mental health diagnosis first. It’s infuriating, insulting and prophetically causes you to actually begin feeling crazy! It’s for this reason I started my story out by saying that my diagnosis was also a blessing. I finally got validation that something was indeed wrong! I wasn’t crazy.
I eventually had an MRI of my brain (thanks to a doctor who finally took the time to hear me). I had several strange symptoms that couldn’t be ignored. I was still producing milk 3 years after I stopped breast-feeding my youngest child. This is more abnormal than it sounds. Your milk should stop production shortly after you stop nursing. I was also having drop attacks, where my legs would just collapse without warning. My MRI was to rule out a pituitary tumor and/or MS. The MRI found neither. It did, however, find a venous angioma that required a consult with a neurosurgeon. To this neurosurgeon’s credit, he took a very thorough history from me and was fascinated by my symptoms. After looking at the MRI films, he concluded that the venous angioma was “nothing”, but I had something called a “Chiari Malformation”. He went on to tell me that it really wasn’t a problem because it wasn’t very long (5-6mm). He dismissed it and sent me off to a neurologist to rule-out “temporal lobe seizures’. I’d like to note that my tonsilar herniation was very apparent, yet it was never so much as mentioned by the radiologist in his report. I went home and looked up what a chiari malformation was. I was floored. They could have named this condition after me. Its symptoms included almost every complaint I’ve had for 20 years! I called the neurosurgeon and asked him why he wasn’t more impressed with his find since I had so many signs and symptoms of ACM. He told me that Chiari categorically was not my problem because I wasn’t herniated enough. The ignorance in the neurosurgical community regarding ACM is absolutely astounding. I explained that I even had (in my possession) medical records that dated back to when I was 11 years old complaining of dozens of the symptoms of ACM. He still dismissed me. I knew I needed to do more of my own research then. I also called the MRI radiologist and asked him why he ignored my brain falling out of my skull. He asked me to bring the films back in so he could look, and all he said was that it was an oversight. He then wrote an addendum to his report. How much more flip can a person be about someone’s brain!????
After countless hours scouring the Internet, I found The Chiari Institute. I was blessed to find out that this world renowned treatment center was 10 minutes away from my home.
I ultimately had a posterior fossa decompression with duraplasty 4 months after diagnosis on February 18, 2005. It took 2 months to get my family on board with the idea that I needed this surgery. I literally would have given up one of my limbs for any chance of regaining my cognitive function. I was actually herniated more than twice what the MRI showed. My vertebral arteries were imbedded and my brainstem kinked.
I’ve since had about a 60% improvement in my symptoms. I no longer have drop attacks and my eyes and brain finally work in conjunction. My cognitive function is still not what I hoped for, but I am very pleased that I tried. .I have no regrets about my surgery- other than I wish I had it 20 years sooner- Which brings me to my children…
Help is needed seeking Federal Grant money to supplement the generous private donations to ASAP.org.
In 2008, our Congress authorized $17.2 billion in Federal Grant appropriations. It’s time they share the pork with the zipper heads.