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Head CaseTrying to decide whether to have brain surgery.

By Peter HymanPosted Monday, Sept. 14, 2009, at 12:19 PM ET

My brain with the "suspicious hyperdense lesion" I used to consider brain tumors a misfortune that befell other people, like typhoons or train wrecks. But in early July, I underwent a routine MRI, ordered as part of a minor eye procedure, that uncovered the presence of a 2-centimeter "suspicious hyperdense lesion" in a small, fluid-filled nook behind my cerebellum, nudged against my brain stem like a cranial house cat. It's unrelated to my ocular problem, and I'm completely asymptomatic, so in the argot of radiology, the finding was "incidental." To me, it was anything but.

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Is this shocking diagnosis an early blessing in disguise or a worrisome red herring? It depends whom you ask. The doctors think the tumor, located at the floor of my fourth ventricle, is either a choroid plexus papilloma or an ependymoma. The latter is worse, but thankfully both tend to be slow-growing and benign; of course, tend to leaves open the frightening possibility of malignancy. And even benign tumors can do serious damage, especially in the cramped spot where mine is. Unfortunately, pathology and potential for harm can be determined only by removing the mass, which requires a pedigreed surgeon to drill a hole in my skull and poke around inside.

At the moment, the tumor isn't causing any functional issues. I feel great, and my only awareness of it is courtesy of grainy film images. (Tumors are like a Bigfoot sighting in this way.) I won't die from it—not this baseball season, anyway. But what about a year from now? Or five? In 2029? The best answer I've received is that there is no certain answer at all.

The vagueness is troubling. It might grow, or it might stay the same size. It might be new, or it might have been there since my birth. It might someday block the flow of cerebrospinal fluid (which leads to hydrocephalus and, eventually, death), or it might not. The most troubling aspect is the tumor's proximity to my brain stem, through which sensory and motor-skill nerve connections pass to the rest of the body. But here again the neurosurgeons are operating in—forgive the pun—a gray area. MRIs provide many miraculous views of the brain, but they cannot peer upward from the direction of the chin toward the scalp, making it impossible to determine whether this valuable real estate has been invaded by the tumor. There are only best guesses, which often feel downright lousy.

As a result, every potential prognosis is theoretical, leaving me to decide whether to operate now or sit tight while monitoring the tumor's development, as if it were a tropical storm with the potential to make landfall. The former requires suiting up for a suboccipital craniotomy to correct a problem I can't feel. Is it advisable to undertake something so risky, psychologically terrifying, and difficult to recover from in order to correct what may become a problem? That's to say nothing of the costs that surgeries of this nature place on our shaky trillion-dollar health care system—including diagnostic testing, the surgeon's fee, anesthesia, and the hospital stay, this will likely be a $100,000-plus procedure. Conversely, the wait-and-see approach means living with the knowledge that the other shoe may drop with a terrific boom.

As one neurosurgeon with the bedside manner of a casino pit boss told me, "I'd want this tumor to really declare itself before I went in." I wanted to sock him in the nose, since "declaration" would take the form of intense migraines, seizures, and brain-bruising intracranial pressure. On the other hand, while I'm lucky to be symptom-free, pain would at least make surgery a form of relief and thus an easier call.

This quandary is troubling but, in the age of the over-testing and ever-improving diagnostic technologies, increasingly common. Studies suggest that early screening doesn't save near enough lives to justify the costs. (The most noteworthy recent example is prostate cancer.) Yet those who can afford them clamor for pricey "executive physicals" at blue-chip institutions like the Mayo Clinic for two days of intensive examination. Scan your entire body and you're likely to find something. But the anxiety created by awareness is often worse than the maladies that are discovered.

So what is the best course for an otherwise healthy, asymptomatic 41-year-old white male with a posterior fossa brain tumor? It varies. Of the five doctors who weighed in on my case, even the four who felt certain that I should do the procedure now were careful to hedge. Each cautioned that this wasn't an emergency (though it feels urgent to me), and none of these board-certified men of steel would do the thing I desperately wanted them to: tell me that I had no choice. Where was the arrogant sureness that comes of years of rigorous training? How could these know-it-alls leave the decision in the hands of a humanities major barely able to apply a styptic pencil?

I turned the process into a journalistic distraction, showing up to doctor's appointments with four pages of typewritten questions, a digital recorder, and a backup stenographer in the form of my anxious but strong wife. I interviewed brain surgery survivors and read obscure neurosurgical journals from Turkey. I tried to divine confidence from the fact that brain surgery (in the form of trepanning) dates to 7000 B.C. and that the first successful brain-tumor excision was performed by a Scottish surgeon in 1879, a year before Thomas Edison was granted a patent for the incandescent light bulb. I even waded into the messy world of brain-tumor chat rooms, which left me feeling relatively fortunate (and sane). The more I learned, the less scary it all became. But anatomical charts and WebMD entries couldn't make the decision for me.

The tumor episode's darkest hour came the night I sat up pondering the letter I would write to my 13-month-old son, Nathaniel, to be read when he reached whatever age is appropriate for a boy to memorialize his late father. The next morning I decided that taking risky, possibly unnecessary action was better than doing nothing. I owed my family the opportunity to avert future catastrophe along with the gnawing uncertainty that accompanies waiting for bad news.

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Peter Hyman is the political and media correspondent for TheFasterTimes.com and the author of The Reluctant Metrosexual: Dispatches From an Almost Hip Life.

MRIs from New York Presbyterian-Weill Cornell, Department of Neurosurgery.

COMMENTS

Great article: very instructive and familiar to me. About 4.5 years ago, I was diagnosed with a brain tumor during treatment for a potential sinus infection (ENT: "I have some good news and some bad news. The good news is that you don't have a sinus infection. That bad news is that you have a brain tumor.") A subsequent visit to an endocrinologist yielded the following: (a) On a Tues, I was advised to "get [my] affairs in order" because I needed surgery that would put me out of commission for a "long time"; (b) two days later, after having looked at the blood work, I was told to "ignore" the previous advice, as the tumor was benign and easily controlled by medication; (c) a month later, the same doctor was again convinced that surgery was "necessary" because the tumor had not shrunk enough between my first MRI and a follow-up scan one month later. Fortunately, I had had the sense (not to mention insurance, transportation, contacts, geographic proximity, etc.) to get a 2nd opinion from a doctor at the Mayo Clinic. His response to this "urgent" need for surgery: Why the h*** would he recommend that?" The alarmist doctor's reaction to this was, at best, less than professional: "If wise Dr. X, recommends that, then you go see him for your care."

Now, 4.5+ years later, the tumor has shrunk, and I am asymptomatic (as I was pre-diagnoses), thanks to medication that costs an arm and a leg. Unfortunately, as a result of this benign tumor, I am unable to get an individual health insurance policy on the private market (I decided to hang out my shingle about a year ago). I am, however, fortunate enough to live in a state that requires health insurers to create a pool and offer insurance to "high risk" people--at a substantial price, even for high deductible plans.

On a "granular" level, it was terrible for that first doctor to put me on the emotional roller coaster and then act like a petulant little kid when someone disagreed with his diagnosis and recommendation.

On a "macro" level and in the near term, however, I'm fairly lucky (or, given that the tumor was benign incredibly lucky), in that I've been able to afford (so far) high quality care and appropriate medication.

In the long run, however, I worry about myself but I also am deeply concerned about people whose circumstances are similar to mine, but who don't have the same luck of geography, friends with connections, etc. Can we not, in this, the wealthiest and most powerful nation in history, afford to help others who cannot help themselves.

-- DSMiller
(To reply, click here)

I had brain surgery last year. Mine was for a cavernous angioma, essentially a vascular defect that hemorrhaged and led to seizures. (The sprinter Florence Griffith-Joyner had one of these and unfortunately died from complications.) I was really fortunate that my first seizure happened while at work and that my work is right near a hospital. The only other symptom I'd had was some nausea. Since this happened in the winter and I already had a cold, I'd assumed I was coming down with the flu.

I could have opted out of surgery but my team at the hospital really advised against it. I would have had to stay on anti-convulsant medication for a very long time (possibly the rest of my life) and I would always risk having another bleed. The surgery was in the frontal part of my brain, so it was an accessible location (relatively speaking). The recovery process was not pleasant, but I'm basically back to normal now. The fact that I'm an otherwise healthy 25 year old female helped out as well.

It's still uncomfortable to tell this story to people I meet because they always say something like "OH MY GOD you had brain surgery! And you're functional?!" It's true that there are people who have these congenital conditions who end up with much worse complications than mine. I learned this on my first visit to the outpatient neurology clinic and saw someone in the waiting room with severe speech and motor impairments. But there are also lucky people for whom it's just a weird blip in their medical history. I'm not Brunehilda, who tragically suffered a cerebral hemorrhage at 25 and had to have her skull cracked open right before Christmas. I'm Brunehilda, who runs around 40 miles per week, makes a mean batch of brownies, and is dreaming of graduate school.

-- Brunehilda
(To reply, click here)

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