That Word: Degenerative
When you’re chronically ill, a single test result could change everything. (Or nothing.)
I originally shared this story at Stories We Don’t Tell in September 2019.
It’s 10:30 at night and I’m doing a final bedtime scroll through my phone notifications when I notice a text from Shields Imaging telling me that my MRI results are now available. So of course, I click the link.
I am squeamish. I have always been squeamish. I fainted once during a lunch and learn about back health because a hand-drawn picture of the spine was too graphic for me. I was rushed to the ER where a doctor told me that this kind of fainting is called vasovagal syncope. Something about the vagus nerve freaking out and your body looking for the quickest way to get your brain level with your heart.
Because I am squeamish, I decide to skip the images and just read the report. My cranial MRI is fine. This is a sort of relief because I’ve been wondering for months if I might have multiple sclerosis. Then I open the cervical MRI report and things get a little fuzzy. The radiologist has used words like “bone spurs,” “stenosis,” “bulging discs,” and I don’t really know what they all mean together.
And actually, I start to get that spotty vision and that whooshing in my ears that tells me I’m about to faint. But my head and my heart are already level because I’m in bed, so I don’t actually lose consciousness. Instead, I can’t stop moving and I can’t get comfortable and my brain isn’t that worried but my body has decided there is a crisis. I start screaming for my husband, Adam, because I don’t know how to modulate my voice. “Adam!” I scream. “This is not an emergency but I need you!”
He runs up the stairs, because of course he only heard the screaming, and immediately tries to figure out what could possibly be wrong.
I tell him about my MRI results. That they might be nothing, but I’m so squeamish about spines that I can’t even use google to make sense of it. He takes my phone to look at the report himself. The report concludes that I have “mild degenerative disease of the cervical spine.” I am writhing around dramatically on the bed because my vagus nerve is so deeply unhappy that my body is staying obstinately conscious.
This is the first mainstream medical test that has ever found anything objectively abnormal about my body. The neurologist who ordered the test is the first specialist referral I’ve received after 5 years of increasingly bizarre symptoms.
During my intake appointment, I told the doctor about my family history. My dad died at 58 from early-onset alzheimer’s, and before that diagnosis he had an essential tremor in his left hand that eventually turned into alien hand syndrome where your arm just sort of moves of its own accord. The neurologist told me that didn’t really sound like alzheimer’s disease, and we moved on.
I told him about how the skin in my legs sometimes burns and sometimes hurts to touch. I told him about how sometimes it feels like the nerves in my arms are screaming and sometimes my hands just won’t grip the way they’re supposed to. Sometimes my hands and arms twitch involuntarily, and I wonder if that’s how my dad’s alien hand got started. I wonder if his degenerative neurological condition that apparently doesn’t sound like alzheimer’s got started the same way.
I told the neurologist that when I’m tired, I have trouble walking. Sometimes when I stand up my heart rate spikes to 145 beats per minute and just stays there until I lie down again. I told him that I briefly lived in a house with toxic mold and it gave me a tremor and incredible cognitive impairment but that these mostly resolved after I left that house. I knew while explaining this that none of these symptoms were apparent in the moment. When I’m well rested these things fade into the background. When I drink alcohol, oddly enough, these things fade into the background.
And then he did something that all doctors should do. Something that all doctors should learn to do on the first day of medical school. He looked me in the eye and told me that I wasn’t crazy. He said my symptoms were subtle, and there might not be an underlying diagnosis that fits right now, but we could run some tests and we could pay attention.
And so the first test comes back and I don’t really know what it means and my body has gone into a vasovagal fight or flight fury, and this word, degenerative, is just waiting for a moment when I’ll have time to unpack it.
During the time between that neurologist appointment and my MRI, the whole chronic illness community was abuzz with news about Jennifer Brea, a filmmaker who made a documentary about her experiences with myalgic encephalomyelitis or ME, a disease that you might know as chronic fatigue syndrome. Brea had decided to get fusion surgery on her neck for something called craniocervical instability, and that surgery put her ME into remission. All of my sick friends were now wondering if their problems were also caused by unusual pressure on the spinal cord, if they could be cured with spinal surgery.
While I’m lying in bed, fidgeting uncontrollably and trying not to think about my spine at all, Adam is googling stenosis. It may or may not explain a lot of my symptoms he says, because it means that the spaces in my spinal column are getting narrower, which could put pressure on my spinal cord. I start thinking about my damaged vertebrae, about the possibility that a doctor will want to cut my neck open. I cringe and fidget and Adam stays quiet for a minute while I calm down. I ask what the treatment options are, and then I ask him not to tell me yet. I take a deep breath.
He tells me that cervical stenosis is common in women over 60, that it may be treated with physical therapy, occupational therapy, and yes, even surgery. I immediately picture myself wearing a neck brace at every wedding we plan to attend in the next few months. I feel dramatic. Just the idea of a neck brace feels like a cry for attention.
He finds a published paper from a doctor who had three patients with ME that improved after surgery for their cervical stenosis. I feel very aware of my unhappy vagus nerve, and try to shake the discomfort out of my arms and legs.
Adam offers to do a sort of guided meditation to help my body chill out. So we lie side by side and he tells us to relax our toes, our feet, our ankles. By the time he gets to our shoulders, Adam is asleep and I am calmer. This might not mean anything at all.
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Previously on No End In Sight — All Of The Burden With None Of The Benefits