Nobody Knows

Small certainties, big life

Before I got the CT scan that led to the diagnosis that led to the surgery to fix a hole in my head, I tried a bunch of things in an effort to figure out what was wrong with me.

Under the guidance of an ear, nose, and throat specialist, I tried daily use of nasal steroids and over-the-counter antihistamines, thinking it might be an allergy issue.

Under the same guidance, I quit caffeine and alcohol while slugging back goopy spoonfuls of sodium alginate, thinking it might be a gastrointestinal issue.

I paid hundreds of dollars to have my sinuses tested for obscure pathogens, to have my poop tested, and also my urine.

I had blood tests, and was treated for anemia and Epstein Barr.

I did cranial sacral therapy to release tension in my head and I did physical therapy to learn how to breathe. I did yoga postures to release my vagus nerve and I did acupuncture to move my qi.

I invited the gloved fingers of a chiropractor to open my eustachian tubes from within the cavity of my mouth, and to also penetrate my nostrils, two knuckles deep.

Anytime I saw a new or established healthcare provider, went to the dentist or got a massage, I’d mention the situation of my very loud voice inside my head. I figured maybe they had another patient, or a high school friend or an uncle, with similar complaints. Maybe they’d read something. Maybe they’d know.

Maybe it was the time we got in a car accident and my head hit the windshield at age three.

Maybe it was the time I ruptured both ear drums trying to get scuba certified on a tiny Honduran island.

Maybe I needed a long vacation.

At one point my primary care doctor said, “Maybe this is just your new normal.”

Tinnitus, rhinitis, candida, IBS, seasonal allergies, seasonal depression, overactive imagination, underactive thyroid, poor posture, too much stress, not enough water, perimenopause, TMJ.

Nobody knew.

When a week-long bout of debilitating vertigo ramped up my increasingly debilitating symptoms, it was time to delve deeper. In the summer of 2023, I had a CT scan and MRI of my head.

The diagnosis was clearly spelled out in the radiology report: bilateral superior canal dehiscence syndrome, in other words a small hole in the bone between my brain and inner ear on both sides of my head. I was referred to a new ENT for confirmation. I brought a friend, and a file folder of medical history. I was prepared.

When the doctor confirmed the diagnosis, I asked if there were any other tests we might run, if there was anything else it might be.

He said, “You either have holes in your head or you don’t, and you do.”

I already knew the primary treatment for the condition was a fairly invasive surgery with inconsistent outcomes, so I asked him to lay out my options, make a suggestion.

“Well,” he said, “I wouldn’t do the surgery. It’s brain surgery.”

And that was that on my options.

I left feeling mildly relieved that the five years of questioning were over. There was a reason, a diagnosis. Finally, somebody knew!

But mostly I felt uneasy, this new chapter of uncertainty spreading through me like the first tinges of motion sickness.

Down in the lobby after the appointment, my friend asked how I was feeling. “I’m afraid they’ll say I need the surgery, and I’m afraid they’ll say I have to live with it,” I replied, my voice thick with tears.

I spent months coming to terms with my new reality and researching next steps. Venturing into, and quickly abandoning, online support groups for this rare condition. Interviewing surgeons. Constantly weighing, asking doctors, asking myself, my husband, my mom…Can I, should I, just live with this?

Nobody knew.

My fears weren’t so dramatic as to think the surgery would kill me. Yes, my skull would be opened and my brain would be handled, exposed. But it was more a fear of the surgery making my symptoms, and therefore my life, worse.

Some people with this condition have great, life-changing outcomes from surgery. Some have life-changing outcomes that are terrible. The surgeon, and their protocol, is essential.

My husband and I made the decision to pursue surgery as a team. Our life, not just mine, was feeling, and would feel, the impact.

Although the two surgical specialists for this condition are in Los Angeles and Baltimore, I decided to stay local at the University of Washington. There were enough benefits to my body and mind in being close to home, and the surgeon I painstakingly chose after three meetings, who was both an ENT surgeon for the inner ear part and a neurosurgeon for the brain part, was highly experienced, competent, confident.

But when it came time for the surgery, and for a few days of recovery in the neuro intensive care unit, I didn’t see my painstakingly chosen surgeon even once. I know from the surgical report, and from the brief phone call he had with my husband to report the all-okay, that he was, in fact, present. But to this day, I’m not entirely clear what portion of the surgery he performed himself.

He had placed my care in the hands of his chief surgical resident, and she was great. For a teaching hospital, this makes sense. It’s just that, I didn’t know.

Among all the things I couldn’t know or predict related to this surgery after a long run of nobody knows, this hadn’t been on my radar. The nonchalance of it flipped something hot inside my rattled, recovering brain.

Although I felt like I’d been hit by five cases of shitty beer on the day of my first post-op appointment, I was committed to expressing my frustration.

“While I should thank you for leaving me in the capable hands of [chief resident], I didn’t know I wouldn’t see you at all,” I managed to say through bleary eyes and a pounding headache as our appointment was coming to a close.

“You didn’t need to see me, she’s that good,” he replied. And just like that, he was gone.

Ultimately, it didn’t really matter. The surgery was a success. In the medical world, this is how it goes.

And still, that hot flip inside my brain. What the fuck? is what I really wanted to say. You could’ve let me know.

The rest of my follow-up appointments with the surgeon followed suit. We’d talk through the mechanics of my recovery: wound healing, hearing tests, how much was I walking. As soon as I raised any questions or concerns about the gray zone of my actual symptoms—how some things had improved but others seemed worse, how long could it take to establish a new normal, how good could I hope for that new normal to be—he’d magically shrink all the words in the room into a vague one-liner about expectations and disappear.

He didn’t say it, but he didn’t know.

And there I was, once again cleaving my desire to know things about my body from the mushy reality of its flesh.

It’s been seven years since this particular medical adventure began, and I can now summarize the experience as follows:

symptom symptom body symptom questions body questions symptom symptom body questions diagnosis questions questions fear symptom body questions symptom fear body procedure body body body healing symptoms body body healing questions body body symptom questions body

It’s not so much that nobody knows, but that what we can know is one small synaptic jump in a sprawling conversation. Essential, but small.

A few words on a radiology report.
A well-researched protocol.
Point A to point B.

All the rest plays out in the scribbles and loops of a big and messy life. Non-linear. Gray, and rainbow. Not stamped in black and white like an answer, but etched in flesh and feeling and asking like a poem, or a prayer.

xo,
Christa