Cyberchondria: D.I.Y. Diagnosis in Overdrive

In researching his chronic headache on the web, veteran journalist Barry Newman takes a terrifying walk down the Via Dolorosa of digital self-diagnosis.

Barry Newman | Longreads | August 2016 | 11 minutes (2,698 words)

 

My headache arrived just after April Fools’ Day, moving into orbit around my right eye, with side trips to the back of my neck. It was mild as headaches go, but persistent, there at bedtime, still there when I woke up. The previous autumn I’d had a cataract replaced by a wafer of plastic. Now I was in the eye surgeon’s exam chair for my six-month follow-up; this headache was three-weeks old.

Since the operation, I told the surgeon, my eyes seemed to be working to form a single image. “A lack of coordination,” I said. And now my head hurt. She pressed a lacquered fingernail to my forehead. “The headache is here, centered above the brow?” It was. “Maybe it’s from strain.”

“I assume it’s an aneurysm,” I joked. The surgeon said, “It sounds like strain,” and sent me away with the name and phone number of a neuro-ophthalmologist, for an expert opinion.

On Sunday, my friend left; my headache didn’t. Reflexively (as usual), I Googled ‘headache won’t go away’…

I had a coffee date that day, uptown at the Hungarian Pastry Shop, with a French student I’d met at Columbia. We talked about a book I was reading, “L’Ordinateur du Paradis,” by Benoît Duteurtre, in which the Cloud replaces God, and departed souls are judged by the political correctness of their Internet search histories. Another friend was in town for a week. Checking the Web for a dinner place, I found one with a dish on the menu containing “karapincha.” I Googled it. (I know I did, because Safari retains a retraceable record of my every move.) The top hit came up on Askiver, a site that “gives you a straight answer for any question you may have” by “implementing artificial intelligence.” Karapincha, Askiver averred, is a leaf used as “porridge for snake venom” in Sri Lanka.

On Sunday, my friend left; my headache didn’t. Reflexively (as usual), I Googled “headache won’t go away”—and from there set out on a nine-day hike along the Via Dolorosa of digital self-diagnosis.

“Chronic daily headaches,” came up on the Mayo Clinic site; and “Chronic tension-type headache” on one called Patient. According to Patient, tension headaches were now known as “tension-type” headaches because fatigue or hunger can cause them as well–too much liquor, too little water, too much coffee. Or eye strain. Eye strain was me. The Mayo Clinic defined continuous headaches on one side of the head as “hemicrania continua.” That was me, too. A study, cited by Patient, found that two-thirds of chronic tension-type headache sufferers go “for an average of seven years before consulting a doctor.” But the Mayo Clinic added a cryptic refinement: “True (primary) chronic daily headaches aren’t caused by another condition.”

My Web history for the next day begins with the top ten meanings of merde in French…

What other condition?

I phoned the neuro-ophthalmologist first thing Monday morning. His next opening was ten weeks away. I wasn’t waiting ten weeks, much less seven years, so I called my GP and made an appointment for the next day. He sat me on his exam table and held up a finger. “Follow it,” he said. “Don’t move your head.” He moved the finger. I moved my eyes. “Your right eye jumped,” he said, and told me I needed an MRI. Medicine’s answer to everything, I thought: test expensively. But a few hours later, the GP called me at home. He’d located another neuro-ophthalmologist. I could see him that very Friday.

Now I wondered: What’s the big hurry?

My Web history for the next day begins with the top ten meanings of merde in French, followed by the e-mails from Hillary Clinton’s archive concerning a gefilte fish shipment from Illinois to Israel. Then, Safari shows, I typed in “headaches months after cataract surgery.” First up was “Chronic Headache pain following eye surgeires” [sic] on the Web site MDJunction. Someone with a headache wrote, “This has been going on for months and I am at my wits [sic] end,” to which Mary R replied: “It sounds (to me…not that I am a doctor or anything) that your eye problems are still likely to be the reason for your headache….I wish I had any idea what to do for that, but…all I know about eyes was learned in high school biology and that is not nearly enough to really help in your situation.” The SteadyHealth site had a “Feeling Bad With Headaches Following Cataract Surgery” page. A guest wrote: “I am also having trouble now with my right ear. When I have my head down, it feels like I am in a drum with water….I am 71 years old and don’t need this misery.”

I’m only 69. My ear did feel a little watery. On wikiHow, I found the “How to Unclog the Inner Ear or Eustachian Tube” page. I skipped the Valsalva maneuver (“blow out through closed nostrils”), but executed the “Toynbee maneuver,” pinching my nose, sipping water, swallowing. My ear didn’t pop. I went to bed with my headache that night, and woke up with it. I had all morning to surf before a lunch date I’d made weeks earlier. “Headache-cataract” had gone nowhere, so I tried “headache-double vision.”

My next sixty-nine searches mined Google’s brain-tumor imagery: with contrast, without contrast, spectroscopy, perfusion, diffusion. Colorful splats within cranial outlines were labeled with variations on ‘tumor invading skull and scalp.’

Death pinged.

Safari records my first hit as a post on xoJane: “It Happened To Me: I Had A Brain Tumor.” The writer was sent for an MRI, after which “the tech came rushing out…asking me, ‘Are you okay? Are you dizzy? Can you stand up?’” My next sixty-nine searches mined Google’s brain-tumor imagery: with contrast, without contrast, spectroscopy, perfusion, diffusion. Colorful splats within cranial outlines were labeled with variations on “tumor invading skull and scalp.”

A gin-and-tonic let me instead focus on my friend’s illnesses over lunch. Back home, I returned to “headache-double vision.” Google supplied a bullet-pointed summary box of brain-tumor signs: “New onset or change in pattern of headaches…. Unexplained nausea or vomiting. Vision problems, such as blurred vision, double vision….” I clicked on the American Brain Tumor Association’s Web site, which opens with: “Brain Tumors do not discriminate.” I learned that 78,000 equal-opportunity tumors would originate in American brains this year; that the side effects would include mood changes; that the treatment’s “first step” is surgery; that in a craniotomy, a surgeon removes a piece of skull and then puts it back; and that in a craniectomy the piece of skull is not put back. My mood was definitely changing. “It is natural,” the Web site consoled, “that the first reaction to a diagnosis is shock.”

I am not, at this writing, yet dead.

The neuro-ophthalmologist’s office was on the ground floor of a midtown apartment house. An Iranian with a certificate from Harvard over his desk, he greeted me that Friday with smiling cordiality. After hearing my complaint (headache, double-vision), he sat me in his exam chair, held a strip of transparent plastic to my left eye, and directed my gaze to a letter “E” projected onto the wall. “How many do you see?” he asked. I saw one. He moved the strip to my right eye. “How many now?” I saw two. The neuro-ophthalmologist emitted a squeak of success. Double “E”s equals double vision. At his computer, he typed quickly, then spoke quickly. In the midst of it, I heard the word “tumor.” He said I must have an MRI. His secretary made a call, and got a Sunday appointment. (Sunday? Why the rush?) She told me to come back Tuesday to hear the results, printed out the doctor’s notes, and folded them into an envelope.

In the apartment-house lobby, I sat on a Barcelona couch and unfolded the notes. “He was alert and oriented…. Speech, language, memory and general knowledge were intact.” But under “Impression,” the neuro-ophthalmologist had written: “…headache is suspicious.” Suspicious? His recommendation, “MRI of brain,” was my brain’s first documentary mention. I slid into the couch’s coolness, stayed a while, and then walked to the 2nd Ave Deli for a dose of matzoh-ball soup.

I am not, at this writing, yet dead. Thirty years ago, watching “Hannah and Her Sisters,” I laughed when Woody Allen’s character mistook hearing loss for proof of brain tumor. (“It’s over. I’m face-to-face with eternity. Not later, but now.”) He was an analogue hypochondriac. I was a digital cyberchondriac, though I didn’t know the keyword yet. I did not die that weekend, but decided I soon would—once past the seizures and coma to come after the operation that the Web told me I needed in a hurry. Guided by the neuro-ophthalmologist’s notes, I pursued my search down a trail of maladies, from diplopia and estropia to nystagmus and strabismus. An invitation to my cousin’s son’s wedding, four months away, lay on my desk. I checked “will not attend” on the RSVP card.

Seeking authority Saturday morning, I searched for “brain tumor” on the Times Web site. It delivered “The Terrible Beauty of Brain Surgery,” a recent magazine piece by Karl Ove Knausgaard. “…The brain was gently pulsating within. It resembled a small animal in a grotto. Or the meat of an open mussel….” That was as far as I got. I turned to the National Cancer Institute, whose site stated that “the brain controls many important body functions,” and itemized brain-tumor variants—oligodendroglial, ependymal, meningeal…until I lost the thread. On Brain-Surgery.com, I learned that “it’s quite probable that you may not feel the same” after brain surgery. Googling “brain-tumor survival,” I hit Everyday Health, which gave surgery survivors my age odds of ten-to-one against lasting another five years. I Googled “celebrities who died at 69.” David Bowie, Alan Rickman, Evil Knievel, Hannah Arendt, Pope Julius II—they all made the cut on Who2.

“I have a brain tumor”—my last, trembling, search that night—took me directly to Patient Comments on MedicineNet.com. I ignored the banners promoting the site’s articles: “Should I Pop that Boil?” “Does Ringworm Mean I Have Worms?” The comments, scores of them, concentrated my mind. Dizzyblond: “I was just diagnosed with a brain tumor yesterday…. After I read everyone else’s symptoms I am so confused and upset. I will be happy when this is over.” Bug eye: “I went to many doctors and finally diagnosed with brain tumor, surgery in two weeks. I’m scared I won’t be the same after this.” Norby: “I simply woke up in the hospital, thank goodness I woke up! I was a healthy guy, worked as a deep sea diver, rode a Harley, raced flat track and was fit as I could be. Now I’m just glad I know my name.”

Bamboozled by the Internet! How could anybody be such a chump? Going offline to press on with my pursuit of a headache diagnosis, I’ve been asking that question at every stop.

Though several comments exuded hope, it occurred to me that they all were posted by patients who were still alive.

The radiology floor at NYU was becalmed at noon on Sunday. My wife came with me. Dinah knits. She was starting a new project for her impending bedside vigil. I was soon fed into the MRI machine, where I got an idea of what it’s like to lie inside a jet turbine while it undergoes maintenance with a rivet gun. During my ride, Dinah texted her brother in New Zealand: “It’s a nice waiting room with a view across the East River to the old Pepsi-Cola sign, which has just been landmarked. Barry very edgy. He’s read too much online and is fearing the worst. Guess we won’t know more until Tuesday, when he goes back to the specialist. It’s so quiet here.”

Over the next day-and-a-half, I prepared to die. A wave of warmth rose in my gut at night, then a wave of cold. Feeling around, I detected a swollen spleen, perhaps a pancreas. My appetite limited itself to cottage cheese, canned pears and crisp bread. I watched an episode of “Frasier,” and didn’t laugh. “You were creeping around like a very old man,” Dinah told me later, “constantly rubbing at your head.” She also went online, but lighted on a long article about diplopia—double vision—on EyeNet, a publication of the American Academy of Ophthalmology. The article was aimed at ophthalmologists, not the public. It listed twenty possible diagnoses for double vision, some including headache, and called it “a multidisciplinary monster” that “tends to be intimidating for many practitioners.” Dinah tried to persuade me that symptoms so confounding to specialists could scarcely be diagnosed by gormless laymen. I was unresponsive.

Up early to attend the reading of my MRI verdict, I shared my contact list with Dinah’s iPhone, gave her a printout of my passwords, and replaced the odds and ends in my file rack with our co-op contract, bank documents, and my will.

The neuro-ophthalmologist addressed Dinah across his desk while I sat there like an eggplant: “So, your husband had double vision.”

“Yes,” Dinah said. “And we went for an MRI on Sunday.”

“We have the result right here.” The doctor swiveled to contemplate the chalkboard outline of my skull on his computer screen. “MRI of the brain. And it shows that basically it was…” He fiddled with his keyboard. “…fine.”

Dinah was grinning.

“It could be some kind of inflammatory vasculitis,” the doctor went on. “Have you read about that?”

“We’ve read too much,” Dinah said. “Barry already buried himself before we got here.”

“This MRI is clean. Any questions?”

I said, “Absolutely not… I didn’t… I’m very, ah…”

“Very good,” the doctor said. “Normal brain.”

Instead of heading to the Thalia for an infusion of “Duck Soup,” we settled for the loganberry juice at Scandinavia House. My trial run with death was good practice, but relief and elation gave way, soon enough, to chagrin. Bamboozled by the Internet! How could anybody be such a chump? Going offline to press on with my pursuit of a headache diagnosis, I’ve been asking that question at every stop.

Neurologist: “Kids in their 20s, they get twitches—benign fasciculations. If you Google it, ALS comes up.” Rheumatologist: “It’s a street corner, the Internet. There’s no guidance. My patients think it’s HAL.‘Dave, stop what you’re doing, Dave. Dave, I’m sorry.’” Physiotherapist: “Things with kids. Bumps, bites. It can be anything from completely benign to fatal.” Online pharmacy customer service advocate: “Every time I feel something, I Google it. And when I go to the doctor, it’s not what I thought it was.”

I have a friend, in his thirties, who lives in New Jersey without benefit of immigration papers or health insurance. The Internet is his GP. When I confessed to my Web-enabled brain tumor, he told me he’d had one, too. “It obsessed me for months,” he said. “I had a pressure migraine, focused on the right side. Finally, I went to the emergency room. I insisted on a CT scan. Nothing. No evidence of anything. The doctor looked at me like I was crazy. He said nervousness and stress amplified these symptoms. He told me, never go onto the Internet. If you feel sick, if it’s an emergency, call an ambulance.”

The fellowship of saps is comforting. Checking the New York Times app on my iPhone on a morning in July, I found that there are millions of us. An item in “The Upshot,” containing twenty-seven hyperlinks to the results of data-driven research, stated that medical apps and medical Web sites “aren’t very good.” Now I know. In June, Google and Microsoft both publicized potential fixes. Microsoft researchers are testing algorithms to track backward through Web histories, to see what people who actually have diseases search for before they know what they’ve got. Google rolled out a symptom search on its mobile app that checks Google’s own results against “high-quality” information it collects from real doctors. Thanks. I’m not going through this again.

About ten years ago, when the Internet was in bloom, I had an ingrown toenail. A Web site I found suggested jamming a wad of cotton under the nail, slathering it with ointment, and wrapping it in gauze. I did it. In a week, the toenail stopped hurting. A few days after my death’s recent postponement, I got another ingrown toenail. I walked in off the street to a podiatrist’s office. He trimmed the nail. It stopped hurting right away. I walked out.

As for my headache, most days it still visits. One doctor has called it “idiopathic,” which the dictionary defines as “arising spontaneously from an obscure or unknown cause,” or “peculiar to the individual.” I’m living with it.

* * *

Barry Newman is a former feature writer and foreign correspondent for The Wall Street Journal. News to Me, a collection of his stories with essays on how he got them, is available from CUNY Journalism Press.

Editor: Sari Botton