Part Two:
It took Dr. Klinge minutes to browse the MRI images and know there was a problem. Going through a few of the slides, she turned the scans from black, gray, and white pictures into living-color understanding, showing us the different markers she looks for that point to herniation of tonsils, disrupted flow of cerebrospinal fluid, and tethered cord. There was no question in her mind that Caleb had Chiari. Based on the correlation between his symptoms and the radiographic evidence, she legitimized the diagnosis and explained the next steps.
Even though Dr. Klinge is a surgeon, she said she had to “do things by the book”, dotting the ‘i’s and crossing the ‘t’s, proving we had exhausted all avenues of treatment before jumping into surgery. That protocol, in this instance, was putting Caleb back on medication for an amount of time, to see if it would bring any relief and thus defer the need for further intervention. We agreed to a three month trial, all while knowing there was no medicine that would fix anything anatomically wrong.
If you are wondering, like we were, why she had such a different viewpoint from any of the previous doctors we had seen, here’s the answer in her own words, “A picture alone doesn’t tell the full story, and conversely neither do symptoms alone. I find the images to be verifiable, and of course with his symptoms, I have no trouble saying his brain is sagging and therefore obstructing the flow of CSF.” The other doctors we saw hadn’t bothered to look over the MRI images (and if you want to know why, that would take a whole other blog post to explain). They simply read the radiologists’ reports and examined a boy whose form of pain management was to distract himself by being as active as possible for as long as possible so he could avoid feeling anything and thus, at face value, looked totally fine. To their credit, he was healthy in every other way.
Caleb began the new medication and I continued to log his ailments.
“My body feels like it’s pinned down.”
“My legs just won’t.”
“My ears ringing (nonstop) is probably the most annoying.”
“It feels like there are swords just stabbing at my stomach. And sometimes it feels like my stomach is being sucked out my back. It’s weird.”
Yes, Caleb, it is most definitely weird! What wasn’t weird was how the medicine did not change a thing. It did not moderate any pain Caleb experienced from his headaches, nor did it minimize the constant tinnitus, blurry vision, weakness in his legs, pins and needles in the hands and feet, dizziness, stiffness, the ‘icky’ stomach, or the near-weekly fall down the stairs. Therefore it came as no surprise that at his follow-up appointment in August ‘24 the plan for surgery was decided. Caleb was to undergo a suboccipital decompression and C1 laminectomy with a duraplasty, and a date was set for November 5, 2024.
Those three months gave me more than enough time to overanalyze, research, worry, doubt, second-guess, be sad, and not sleep. I used the patient portal to send numerous questions to the surgeon, needing both answers and reassurances. It was made very plain to me that this surgery is not considered a cure, but rather a treatment. One with an 85% success rate but one that also comes with potentially serious side effects and complications. Were we really going to put our eight year old through such an invasive procedure? We were warned that the first little while would be pretty rough. Mentally, I was as prepared as I could be with all that head knowledge, but I was sure my mother’s heart was going to die a thousand deaths.
The words of the hymn, He Will Hold Me Fast, were of great comfort to me during this time:
When I fear my faith will fail,
Christ will hold me fast.
When the tempter would prevail,
He will hold me fast.
I could never keep my hold
Through life’s fearful path
For my love is often cold
He must hold me fast.
He will hold me fast
He will hold me fast
For my Saviour loves me so,
He will hold me fast.
*****
Though I had major apprehensions, Caleb’s body was making it clear that something needed to be done.
“My neck hurts. It feels like it’s pounding; it’s just an intense feeling, I don’t know how to explain it.”
“My brain feels like it’s going to throw up inside my head.”
“My brain is all cloudy. Blurry. Does that make sense?”
Many a bedtime in October was spent with him asking questions about the surgery and recovery and it was truly heartbreaking. His innocence and naivete mixed with his curiosity and daily dealings with a plethora of symptoms made those nighttime question sessions bittersweet. He wanted to know how the procedure was going to go: “So, what are they going to do to me, anyway?” He wanted to know where he was going to stay: “Will I be in the Ronald [McDonald] House with you and Daddy?” He wondered if he’d die🥺. He wondered if it would work and he’d be able to say, “Is this what it’s like for you guys? This is AWESOME!”
And then it was time.
*****
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