Our first nights aboard the train were physically my hardest. I had only told a very few people, we didn’t yet have a confirmed diagnosis, and Christopher’s headaches were getting worse. He was up most nights trying to remain perfectly still to ward off severe dizzy spells, he was nauseous most of the time, and the headache was bouncing between moderate and severe at all times. He had quit the swim team he loved because practices intensified the pain so much and had also stopped playing outside with his friends. I’d finally given up on schoolwork, instead allowing him to read on the couch most of the day. It was easier than watching him silently cry while sitting attempting to do fractions.
I had moderate G/I upset, had lost several pounds, and was suffering insomnia. After one particularly scary episode where we had to ask ourselves whether or not he was having a stroke or seizure, the on-call pediatrician told us he thought Christopher was having intermittent intracranial pressure spikes, consistent with the Chiari diagnosis, and that it was time to admit him to Inova Children’s. The idea was that the pediatric neurologist, gastroenterologist, and neurosurgeon could come to him and do the required brain MRI and blood work to get a firm diagnosis in a much shorter timeframe than if we did separate, outpatient, clinic appointments. Furthermore, all this could be done while feeding him an IV headache cocktail to try breaking the headache since over-the-counter methods had failed. He was very scared of the IV, as he’s always hated needles, but we didn’t have to coerce him into the hospital. He was ready for an answer, and hopeful stronger meds would finally rid him of the headache.
In fact, I think he was a little too eager, as the resident was disinclined to hook him up to the IV meds his pediatrician had ordered—she thought he was too chipper for the level 8 headache he described. I’ve since learned, that’s just his hospital demeanor. Where he shuts down at clinic appointments, sure the doctors are going to ask him the same million questions he’s already answered multiple times, he feels like hospitals get things done—scary things, to be sure, but still, things that move the train into the next station. And sure enough, while the IV meds brought less than 24 hours relief from the headache and never fully broke it, the brain MRI and blood work brought us definite news. First, the gastroenterology work up showed no evidence of inflammatory gut disease, liver or pancreas deficiency, anemia or other nutritional deficiencies. And second, the brain MRI definitely showed a severe Chiari I Malformation.
I’ll never forget our conversation with the pediatric neurosurgeon. Dr. Leon Moores came in wearing a full suit and tie, with a young female PA in tow. He asked me to sit and tell him about Christopher’s headaches. Christopher, excited because he’d been told we could leave, and temporarily feeling pretty good because he only had a mild headache, spent the entire conversation manipulating every button he could find on the hospital bed—there’s a reason I call him my little engineer. At one point, when I described Christopher coming in from playing with his friends to eat dinner, only to intermittently stop, place his head upside down in his arms, and then continue eating, the surgeon’s eyes opened wide and he signaled to the PA. When we were done and, for the first time, I was given a full explanation for a Chiari I Malformation, he told me that Chiari headaches are considered exertional headaches because the cerebellum and brain stem, in their herniated state, sometimes block cerebrospinal fluid (CSF) flow. CSF flow is what prevents your brain from bruising itself on the interior of your skull every time you suddenly stop, whether walking, riding a bike, flipping a cartwheel, or braking a car. Without the necessary fluid flow, pressure within the brain spikes (hence our pediatrician telling us he thought Christopher was having intermittent intracranial pressure spikes). But here’s the kicker—putting your head upside in your hands allows that brainstem, like a cork in a wine bottle, to float out of the foramen magnum and restore flow. That, we were told, was more indicative than the MRI that his Chiari is severe—after all, he’d figured out the posture by himself, just like all Chiari kids, without needing to read the textbook. He also told us we would need to get to know each other very well before we discovered whether Christopher’s headaches were caused by a Chiari severe enough to warrant surgery.
Figure 1--Unfortunately, Professor Ken Ashwell did not put a skull around this image, but it does show the path of cerebrospinal fluid flow around the brain, and its encapsulation by the dura. The Brain Book, p. 67.
I left Inova Children’s hospital feeling much, much better than I had in weeks. Christopher, for all his hospital bed button-pushing, had heard the words brain surgery and made sure to tell me he was too scared to even consider it. But I felt relief in the definite. For me, ignorance may be bliss, but uncertainty is hell. The insomnia continued, but my stomach started behaving much better and I stopped losing weight. Christopher, however, just kept getting worse. All car rides now triggered massive motion sickness, far worse than the kind he’s experienced his whole life. By the second day home, he informed us he was never leaving home again, it just wasn’t worth the pain.
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