The first chapter of this wonky story begins in 2004. I had been suffering with horrible pain in the back of my head. The pain would get worse when I laughed, coughed, yelled or pooped. Yep, I said it. Pooped! I told ya from the get go I am a what you see is what you get kind of girl. There will be no sugar coatin’ from here on out. I was experiencing dizzy spells, ringing in my left ear and balance issues. By balance issues, I mean I would run right into a wall and appeared drunk most days.
In 2004, I made a visit to a neurologist who diagnosed me with Chiari Malformation. I know, I know, you’ve never heard of it. I hadn’t either. Believe me when I tell you I am well versed in all things Chiari now.
The neurologist sent me to a neurosurgeon at Methodist Hospital in Houston. Good ‘ole Dr. Parks. He had the personality of a wet mop. A characteristic I have come to find common in the field of neurosurgery. Another characteristic is a God-complex. More on that later. Dr. Parks exact words after looking at my MRI: “We are going to remove just a little bit of skull and you’ll be fine.” The reciprocal words of a naive 20 something year old wife and momma of two: “Let’s do it. How soon can I get it done?”
Red flag alert for anyone who has been diagnosed with Chiari. Seek a specialist and get more than one opinion!
I had my first decompression and a laminectomy of C2 and C3 in July, 2004. The surgery lasted about six hours. I was in Neuro ICU for 24 hours. I spent less than 24 hours in a regular room and then returned home. I had an incision the length of a dollar bill from the base of my skull down, held together by staples not to mention the sutures on the inside.
This surgery was the easiest of the three. After about two weeks, I was up and bound and determined to get strong. I started walking laps at the high school. I was feeling pretty good…until I didn’t. You see, I had a synthetic patch that replaced the small amount of skull that was removed to make room for my enormous brain. Just kidding, brain size has nothing to do with Chiari, it is a skull malformation. Anywhoo, this synthetic patch was soon to be the culprit of worse headaches than I had been dealing with prior to surgery. I called Dr. Parks and tried to convey the extent of the pain. He and his nurses dismissed me several times. I wound up at his office unannounced and insisted that they take a look at me. Guess what, I wasn’t foolin’. That little synthetic patch that was supposed to pose as a barrier between a head hit and my brain, had in fact caused chemical meningitis. According to Dr. Parks, I was the only patient that his group had seen that had experienced any adverse reaction to the patch. Yep, I’m special. I was given a bunch of steroids and told that if the pain didn’t go away in 4 to 5 days he would have to go back in and replace the patch with something else. Thankfully, the steroids did the trick. I don’t really remember how long it took me to feel good. Again, this was the smoothest of the three surgeries. It was also the easiest to bounce back from.
Life resumed and ten years later, all hell broke loose.