Weird Science
Issue #14 of “What’s Her Problem?”: Patients endure some bizarre tests in the pursuit of a diagnosis.
Science is awesome, but sometimes it’s also weird.
There are plenty of straightforward tests. An xray? Easy. Just stand or lie down in a certain position for a moment, and they can magically see your bones.
Saliva tests? Simple. Spit in a tube, mail it out in the prepaid box, and you’ll know your cortisol levels in a couple of weeks. Urine tests and stool tests can be done at home too.
Ultrasounds? Non-invasive.
Bloodwork? Routine.
Even traditional MRIs (Magnetic Resonance Imaging) and CT scans (computerized tomography) are generally innocuous, as long as you’re not claustrophobic or allergic to the contrast dye.
However, when doctors are searching for an elusive diagnosis, they occasionally need to bust out the weird science.
Before I was diagnosed with Autoimmune Sensory Neuropathy at the Mayo Clinic in 2019, local doctors hypothesized that I had Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), which is similar to Guillaume-Barre Syndrome (GBS). (Try saying that sentence 10x fast!) Doctors still use CIDP as my diagnosis code because no such thing exists for the condition I actually have.
CIDP and GBS affect the myelin sheath, which covers the nerves,1 while my neuropathy affects the wires of the nerves. That is why I experience loss of sensation, but my muscles are intact. Ideally, the doctors would have done an MRI to confirm or deny the CIDP diagnosis.
Unfortunately, when my original ICD (Implantable Cardioverter Defibrillator, which is both a pacemaker and a defibrillator) was implanted in 2016, I was told it was not MRI-compatible. Meaning, I could never have an MRI with that device because the magnets in the MRI machine would destroy it. (If you are starting to see a theme in my posts about the hidden challenges of life with an implanted cardiac device, then you are correct.)
So, my doctors had to get creative.
Their solution was a CT scan with myelogram.
Never heard of that?
Me neither.
The Cleveland Clinic describes a CT scan with myelogram as:
an imaging procedure where a contrast dye is injected into the spinal fluid surrounding the spinal cord. The dye outlines the spinal cord and nerve roots, allowing doctors to see if there are any abnormalities, such as compression or damage.2
I wasn’t thrilled with the idea of having anything else done to my spine, after a recent spinal tap, but given the unavoidable presence of my ICD, it sounded like my only option.
Hungry and exhausted, I waited at least 90 minutes in a crowded hallway in the basement of the local hospital, amid a lengthy inpatient stay, for my CT scan with myelogram. My gurney was lined up behind several others that had priority in this dungeon-like space.
When my turn finally arrived, an orderly wheeled me into a procedure room, where I was expecting to see a traditional CT scan machine. Instead, there was a long, flat table, and the scanner appeared to be hanging above it, rather than surrounding it.
A group of nurses appeared, seemingly out of nowhere, ready to transfer me directly from the gurney to the exam table, since I was unable to transfer myself. They moved together seamlessly like a flock of birds, deftly sliding my hospital gown-clad body across to the table and positioning me on my left side, thereby providing access to inject the contrast dye in my spine. Most of the nurses promptly disappeared again.
The doctor performing the exam arrived and injected the dye. So far, so good.
Here’s where things got weird.
Suddenly, a nurse appeared in my line of sight, and she was carrying a pair of large, brown, lace-up ankle boots. They looked like something you would wear for a hiking excursion.
The reason I was in the hospital to begin with is that I had lost all the nerve sensation in my feet, and it had been replaced by excruciating pain, which, I would later discover, was the nerves dying. For weeks, I hadn’t even been able to wear socks, and the situation had devolved enough that by the time I arrived at the hospital unable to walk, my feet were so sensitive they would only tolerate a pair of very fuzzy slippers, lest the pain be made even more unbearable by the application of real shoes.
So, when I saw the nurse and her boots heading towards my feet, I yelled.
“Stop! What are you doing?!”
“We need to distribute the dye throughout your spine. The table you’re lying on is a tilt table,” said the nurse.
An image started to form of what their plan entailed. This nurse was about to put my feet into these boots, strap the boots to the table, and tilt me up in the air, hanging by my feet, in order to get the dye to travel towards the top of my spine. (Yes, you read that correctly.)
“But I can’t feel my feet!” I protested, futilely.
“We know,” the nurse responded.
And so, they proceeded.
My feet howled with nerve pain as they were stuffed into the boots and clamped down to the table. And as the tilt table began to rise, feet first, I was literally being strung up by my ankles, unable to feel my feet below (well, now above) them. The table continued to tilt until I was hanging nearly vertically.
Whatever imaging the people in the room did to ensure the dye had distributed itself properly, I don’t remember. All I recall is dangling there feeling the bizarre combination of numbness and extraordinary nerve pain in both feet that I still feel today but had not yet grown accustomed to. I was also certain I would fall, landing head-first on the floor below, thereby creating a whole slew of new medical problems.
A sigh of relief escaped from my body when the table finally began to tilt back towards a more stable, horizontal position, and I thought I was out of the woods when the nurse removed the boots from my limp, atrophied, and discolored feet.
But no, there was more! Now lying flat on my back, the first set of CT scan images were taken. Once those were complete, I was asked to flip over onto my stomach so they could get the rest of the images.
“I can’t do that,” I said.
“Why not?” asked the nurse.
“Well, I can’t feel or use my feet, and my hands and arms are kind of numb too,” I began. (Go ahead and try to flip over from back to front without engaging any of your limbs…it is quite difficult!) “And I haven’t been able to lay on my stomach since my ICD was implanted because it’s really uncomfortable.”
“You’re going to have to. We can help you,” said the nurse.
Before I could protest again, the flock of nurses re-appeared, surrounded me, and gingerly flipped me over onto my stomach so as not to disturb my spine.
And there I lay, face-down on the table, neuropathy-weakened arms pinned to my sides, feet feeling non-existent in their numbness and ever-present in their painfulness all at once. The only thing I could think of, in that moment, to compare myself to was a fish.
Yes, a fish.
I felt like I had been freshly caught in the ocean and plopped onto the deck of a boat. I was flopping around, out of control, without the use of any paws or hooves or claws, my fins and head waving away uncontrollably.
When the remaining CT scan imaging was complete, the nursing flock gently returned me to my back before sliding me over to my gurney. I was instructed to lay as still as possible the rest of the day, with my head slightly elevated above the rest of my body. In doing so, I was able to avoid what the head nurse told me had the potential to be a severe spinal fluid-induced headache.
The test results came back later in the day, and there were no findings of significance. Mild scoliosis, which I’ve had since childhood, but otherwise no issues with the nerves, the disks, or any other part of my spine.
We would have to try something else to get to the root of my problem.
Several months later, in a conversation with my cardiologist, I was whining a little bit about the CT scan with myelogram experience and expressed that I hoped my next ICD would be MRI-compatible. That it would make my life easier.
“Hang on a sec,” he said, moving to his computer. After a few moments, he seemed to find the information he sought.
“Your ICD is actually MRI-compatible now,” reported the cardiologist.
“What do you mean?” I implored. “An ICD can retroactively be made MRI-compatible?”
“Yes,” he explained. “Your device model and leads underwent testing within the last couple of years to prove that they are safe for an MRI machine, and the programming has subsequently been updated.”
“Were they planning on telling anyone that?” I asked.
My cardiologist chuckled.
I allowed myself to laugh with him. In retrospect, it was at least mildly amusing. Because that is the very crux of the joy of managing multiple medical conditions. Trying to find ways to manage the particular requirements of each in a way that doesn’t disrupt the others.
In the end, I could have avoided the whole myelogram experience.
At least there would be no more fish-flopping or dangling by my feet in the future!
But, of course, in a life with chronic illness, there will always be more weird science.
Each issue of “What’s Her Problem?” includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber to join the conversation in the private community Chat.
This week’s questions:
What is the weirdest or most uncomfortable medical test you have undergone to find a diagnosis? How do you decide what you’re willing to endure from a medical test in order to find answers? Is there a line or threshold?
A couple years ago I was trying to get to the bottom of some swallowing issues I was experiencing. I had to do a test where they stuck a tube up my nose and down my throat, had me tilt back on a table, and they squirted salt water into my mouth and had me swallow.
It was about as pleasant as it sounds.