“The only true wisdom is in knowing you know nothing.” – Socrates
If this did not instantly take you to “You know nothing, Jon Snow,” then we might not be able to be friends. That’s not true … I binge watched Game of Thrones for two months before the season finale for the first time ever, true story. Knowing nothing, however, is exactly how I felt the moment I was diagnosed with Chiari Malformation. So many parents learn of this painstaking diagnosis via ultrasound or within the first few years of their little lives.
Not me, no, of course not. I lived my life well into my late twenties without knowledge of the word “Chiari” … I truly thought I was an oddball. A medical anomaly. Never in a million years did I attribute any of my lifelong symptoms to my brain. I know exactly what I would call the precipice in my decline, which was a pretty bittersweet part of life. At 37 weeks pregnant with my eldest son, I was rushed to be induced. Clearly, my body was not ready for an induction. After being administered the usual culprit for forcing a baby into the world that Thursday night, it was not until Saturday afternoon, via c-section, that my precious little man was pulled into this world just a little too soon. As he was grunting with fluid in his lungs, he was whisked away and I was left in the operating room to finalize the surgery. Dead weight and full of fluid, I was mortified. The triage nurse who took all of my details upon arrival said, “Don’t worry, I’m a big girl too,” when asking my weight upon arrival. I was never a “big girl” to begin with, but the fluid retention of the pregnancy was a legitimate cause for concern.
Following the procedure, I was moved from the surgical table to a bed (not very gracefully …) and into the post-surgical room. I was told that this was a ten minute spot, however, it was shift change and I may be in there for an hour. Within fifteen minutes of laying in this small room, I had pressed the gimme-meds button seventy-five times … 75. During labor, I had not pressed the button once. I remember thinking “I do not think I should be able to feel everything yet.” I was seeing stars, the room was closing in on me. My resting heart rate skyrocketed to 158bpm. The epidural catheter had come loose … my back was wet and I was headed into shock. The team was acting quickly to administer medicine to help, but this was the beginning of the slope. I was in that room for 12 hours. And I was in there for 3 before anyone from my family had been notified, side note, this is still a hot topic for my mother.
That pregnancy, delivery and epidural into my spine, in my non-medical opinion, is when my body and my Chiari Malformation set its wheels in motion for signals of distress. It took eleven ER visits in one year, chiropractic visits for my spine as I could not walk for long periods of time, a second painful pregnancy with hips separating from my pelvis and finally — an incidental finding via CT scan in an emergency room that dubbed my pain as TMJ. The next day, I received a phone call from the ER asking if I had my results. Silly of me to have believed TMJ was the answer, but I did until this moment. The CT scan had been reviewed and a “heart shaped incisura” was discovered. I was suggested to request my primary care to order a brain MRI.