I received the call around midnight. The story as told to me by the referring physician went like this. The patient was in his fifties. He had a long-standing psychiatric condition diagnosed as schizoaffective disorder (in the family of schizophrenia diagnoses, but with a significant mood component). A few years prior, a new small growth appeared on the right side of his forehead. He thought nothing of it. The growth enlarged, and he continued to ignore it.
Fast-forward a couple years, and the growth had taken up half of his forehead and had deepened its roots. When infection set into this large erosive lesion, the patient discovered at least a shred of decorum within himself and began to wrap a towel around his forehead, so as not to alarm anyone. Soon, the wrap encompassed not only his forehead but, as the tumor and infection spread, also his right eye. Still, he sought no medical attention. And, worse, no one had forced him to seek care. He did have a few distant relatives, but was otherwise an outcast.
Finally, after weeks of wrapping and rewrapping, he entered a convenience store and was stopped by the police for questioning. Other customers in the store had complained of a stench emanating from the towels around his head and face. The police took him aside, unwrapped the towels, and rushed the guy straight to the nearest emergency room.
A local surgeon at that hospital did a quick superficial debridement of the worst of the mess, including enucleation—removal of what remained of his worthless gelatinous right eye—and wrapped him back up until more definitive treatment could be undertaken. Infection and tumor had ravaged the entire right upper quadrant of his face and head. This was not a simple case for a small community hospital. The referring physician dictated a stat summary, gave me a call, and sent him over.
The patient arrived around two a.m. after a long ambulance ride. As he was wheeled down the hallway, I grabbed the envelope containing his medical records off of his stretcher. I read through the pages at the nurses’ station while the paramedics and his nurse-to-be got him settled in. First, I reached for the brief operative note dictated by the surgeon. I fixated on statements that described the patient’s wound, including—and I quote—“maggots of various stages of development.” This was a first for me.
I looked through his blood test results and most of the values were flagged as abnormal. Clearly, whatever process was going on had affected not only his face, but also many of his bodily systems. He was not a healthy guy. I anticipated a hostage crisis.
I walked down the hallway to the patient’s room. He was not talkative and neglected to say hello back to me, but was able to state his first name when I asked. The dirty towels I had heard about had been replaced by a wrap consisting of several loose layers of white surgical gauze. His flimsy hospital gown was draped over his body, and I could see that he was overly thin and bony, skeleton-like, clearly malnourished. I wondered if the tumor had spread throughout his body. He had no specific complaints to report and was vague and nonchalant regarding questions about his face and head. In his answers, he strung no more than three or four words together. He had no questions for me. There was no emotion. His remaining eye failed to make any eye contact.
I began the process of unwrapping his head so that I could assess what had to be done. I wore a double layer of gloves. His nurse, herself more quiet than usual, assisted from the other side of the bed. I was tired and felt a yawn come on but decided against opening my mouth. I was already repelled enough by the thought of filtering the ambient air through my nose.
The outer layers of the head wrap were clean and white, but the deeper layers were damp and faintly pus-stained. As I came upon the deepest layer, a small weak black fly escaped the wrap and landed on my arm. I shook it off and it landed on the bed, motionless. What we were left with, underneath the wrap, was a thick wad of gauze pads covering a large defect where his scalp used to be. I tried to lift up the corner of a pad near the center of his forehead. It was stuck. I could tell there was no bone underneath it. Through the unwrapping, the patient sat still and silent, staring ahead at the wall.
The nurse went out to the hall to grab some saline. We would have to soak these pads off. I didn’t want to pull on them not knowing what they were stuck to. I poured saline over the entire matted wad, letting it dribble over his face. Once it was soaked, I was able to pull the wad off in one large piece. As I had suspected based on the notes, there was a good patch of skull that had been eroded through by a combination of tumor and infection. I examined the pads that came off. Small bits of necrotic gray and white matter were stuck to the deepest layer. With everything open to air, I recognized the unmistakable clarity of cerebrospinal fluid dripping down the side of his head.
The nurse and I looked up at each other and could find nothing appropriate to say. Then, looking back down at the patient, my eyes became fixated on a subtle movement. Was I hallucinating? I continued to watch until it became clear what I was seeing: a fat white maggot emerging from the man’s frontal lobe. Feeling a wave of nausea, I retreated with the nurse into the hallway, leaving the patient alone with the parasite that had been feeding off of him for who knows how long.
I regained my composure. Knowing that I would have to awaken my attending, describe this patient over the phone, and come up with a plan, I forced myself to reenter the room. I made some quick measurements of the gaping defect and the extent of exposed brain. I glanced over the empty eye socket only briefly—that’s not my field—but I knew that what I could see were the remnants of his extraocular muscles. As for the maggot, it was nowhere to be found. It may have headed back in. I rewrapped his head.
I needed a little more information before coming up with a plan. We wheeled him down to the CT scanner. I needed to know how the rest of his brain looked. How extensive would we have to get with this guy? How deep would our operation have to go? As the images appeared one-by-one on the monitor, I could see the radiology tech’s eyes widen. We hadn’t bothered to clue her in to the whole story. It was late. “I don’t even want to ask” was her only comment.
I groaned when I saw the images. In addition to missing a portion of his face and head, he had an enormous brain abscess just below the exposed area of brain. He was in even worse shape than I had thought: a schizophrenic man missing part of his face, one eye, and with an abscess taking up most of his right frontal lobe. As one of my mentors likes to say at times likes these, “He’s a winner!”
The following morning, I presented my new patient to the entire team of residents and showed them his scan. My plan was to take him to the operating room, remove the abscess and remaining right frontal lobe, and have our plastic surgeon buddies cover the whole defect in some creative way. My hopes of participating in this unusual case were quickly dashed as my chief resident piped up: “Step aside. Looks like I’ll be doing that case!” Even though I had done all the grunt work at two a.m., I had to respect our hierarchy. That’s how things worked.
During the operation, I popped in and out of the room to check on the progress. The mood was festive. Black humor, of course, was bouncing around the room at regular intervals. My chief resident bellowed out to the scrub nurse, in a mock serious voice: “Give me the extra large suction tips, nurse, can’t you see we’ve got maggots here!” The attending neurosurgeon wondered out loud, asking no one in particular: “So what did this guy say when he went to the barber? ‘Take a little off the top, but careful around the frontal lobe.’” And so on.
The plastic surgery team had a field day with this case, snapping photos as they went. They always enjoy a challenge and this was no simple nose job. They ended up transplanting a large flap of the patient’s own abdominal muscle and skin to cover the large defect, including patching right over the eye socket. Their work took hours, much longer than our crude brain-sucking exercise, and they were clearly quite proud of their masterpiece. I wondered how many slide shows this unfortunate patient would star in, at countless conferences, for years to come.
For the next three weeks, our team rounded on this man twice a day. We relegated the nitty-gritty of his care to the lowliest member of our team, the intern. Thanks to a lack of insight, he was placed in the very first room at the beginning of the hallway. Unsuspecting family members visiting patients farther down the hall were subject to a disturbing sight when the door to his room was left open. The view did not feature his good side, but instead showcased the handiwork of the plastic surgeons. There were several drainage tubes hanging out of the swollen fleshy construct that covered a good deal of his face. It wasn’t pretty. He became our poster boy for the importance of early detection and treatment of skin lesions.
Despite our clearing the infection, forcing nourishment through his veins and into his stomach, and asking a psychiatrist to help us out, the patient never really perked up. We never had a real conversation with him. He never had any visitors. We checked out the rest of his body and there was no evidence that the tumor, which turned out to be a squamous cell cancer, had spread to other organs, despite its local aggression. He could survive in this state for quite a while. After numerous phone calls, reams of paperwork, initial rejections, and tens of thousands of dollars of free hospital care, our social worker found a nursing home willing to accept him, and we never saw him again.
In the end, what did we really accomplish with this patient? Does our work need to be appreciated by anyone in order to consider the effort worthwhile? I certainly detected no appreciation from the patient. He didn’t even care that maggots had invaded his brain in the first place. (These maggots, by the way, however revolting, were to be thanked: they probably extended his life by eating away at the infection. He might have been in even worse shape if the natural world hadn’t stepped in to help him out.) Given the baseline fragmentation of his mind and the additional destruction of brain function from infection, he seemed to have been rendered incapable of any appreciation, or perhaps any emotion, at all.
To make matters worse, whatever relatives he had certainly didn’t care. They never visited or made contact. In cases like this, though, it’s helpful not to think too much about questions of futility. Such philosophical musings risk inviting depression or inefficiency. Better just to fix the problem and move on to the next one. It’s all part of being a service provider at the end of the line.
FOURTEEN
Controlled Trauma
As a child, I could easily spend an entire dreary Cleveland winter afternoon cleaning, organizing, and rearranging my bedroom, even though it was pretty neat to begin with. When perfection had been achieved, I would invite my parents in for a tour, encouraging them to open closets and drawers so they could admire the way I arranged my clothes or organized my stamp and coin collections. I took pride in attention to detail. I’m not sure if they were more proud or more worried. They certainly didn’t promote such behavior in any way. There was no real cause for concern, though. My desire for neatness never reached the realm of the obsessive compulsive. I’ve seen obsessive compulsive—in the psych ward—and I’m quite confident that I’m simply neat.
I can even recall a brief period of time, as a very young kid, when I thought I might want to be a cleaning lady when I grew up. It was fun to clean things and then marvel over the results, so why not do what you love as a career? That thought quickly faded when it dawned on me that it wouldn’t be as much fun to clean other people’s rooms.
I have always valued simplicity, too, which I think goes hand in hand with neatness. At around the same age that I started cleaning my room as a hobby, I would pore over my mother’s
Architectural Digest
magazines, looking for the stark white modern houses, the ones with wide open space and entire walls of glass. I also sought out the traditional Japanese houses with their clean, uncluttered aesthetic and neat tatami-mat rooms, tearing out the pages that I thought I could use as inspiration for my own future home. I would flip past anything too rococo, too ostentatious, or too golden.
I met my husband, Andrew, when I was a freshman and he was a sophomore in college. I remember him calling me up after one of our first “dates,” if you can call them that, which consisted of our studying together in various empty classrooms around campus. We would spend almost as much time searching for the perfect classroom—walking all over the place at night, between the architecture school, the arts and sciences buildings, and the law school—as we would studying.
Over the phone, he asked me, in his characteristically straightforward way: “So, what’s important to you?” I answered, in the abstract: “Simplicity and consistency.” In retrospect, my rather Amish-sounding answer may have been a risky way to try to impress a guy. He took to it, though, and we continued to study together, which eventually led him to ask me out for dinner, a turning point in our theretofore ostensibly academic relationship. We went to the local college town Indian restaurant, Sangam, for curry and tandoori, and things have been both simple and consistent ever since. Years later, we still talk about the “curry effect” and its transformative powers in a relationship, the details of which I will leave up to the imagination. (The simplest relationship advice I can give, by the way, now over ten years into marriage: be honest, have fun.)
Lucky for me, Andrew was a natural neat freak, too, in all ways except for his personal style at the time, which was a carefully crafted messy look with the longer hair, untucked shirts, and few-day-old stubble—the exact look that college girls like myself went crazy over. His room in his cool off-campus apartment was a dead giveaway to his kindred neat-freak tendencies, though, with books on philosophy, biology, and poetry arranged just so on the shelves, and not a stray sock on the floor. His handwriting, even, was exquisite. I knew early on that this was a guy I could really like.
Some types of surgery are neater and cleaner than others. A slash-and-burn brain trauma case, for example, when minutes count, can be a mess: blood on the drapes, the shoes, everything; surgeons yelling, swearing; instruments flung aside after use. The scalp is flayed open in seconds, the bone flap drilled off and tossed over to the scrub nurse with what looks like reckless abandon. All motions are in hyperdrive until the blood clot is sucked out and the brain relaxed. At the end of the case, everything is closed up and the stress level settles down, but that’s exactly when the complexity of care gets revved up: intracranial pressure needs to be monitored and tweaked, one or two of a myriad of possible infections might set in, other less lethal bodily injuries require attention, and the family is counseled through their shock and confusion, which takes time, care, repetition, and tact, day after day. The operation is the easy part.
Compare that to a type of neurosurgery that is so unlike surgery that its claim to inclusion within the world of operative procedures sometimes has to be defended. On my first day in the Gamma Knife suite as a junior resident, I fixated on a photo of our chairman standing next to the retro space-age-looking Gamma Knife unit, an early model with a spherical bulbous portion that the patient’s head goes into, and a flat slide-like portion that their body lies on. He was wearing a handsome tuxedo and a subtle smirk. The caption read: “Civilized Neurosurgery.” I knew I was in for a different experience from what I had been used to. I could clean the caked blood off my shoes and know that they would stay clean. Here was something that really appealed to my neat-freak tendencies. Had I found my niche? The two Gamma Knife surgeons in our department did have the neatest offices.
The Gamma Knife unit delivers a form of focused radiation to a specified target within the head. The procedure is called stereotactic radiosurgery. There is no cutting, no sucking, no blood. The radiation can be shaped in such a way as to treat an irregularly shaped tumor deep within the brain while leaving the surrounding tissues (brain, scalp, skull) relatively unaffected. The benefits over conventional radiation therapy are numerous: minimal to no radiation damage to the brain, no hair loss, and maximal dosage to the tumor. Even better, the radiation is delivered as a one-shot deal, not in multiple sessions over weeks. Add to all this that the patient has no incision, little pain, a simple overnight hospital stay, and no real recovery time and you have a pretty slick alternative to the old-fashioned “cut the head open” approach.
There are really only a few drawbacks. Accurate targeting of the lesion and shaping of the radiation requires that a four-pronged square metal frame be screwed to the patient’s head during treatment (I mean, during surgery; the Gamma Knife surgeons are careful to avoid such a nonsurgical term as “treatment,” especially when among other neurosurgeons). The application of this frame actually isn’t as bad as it sounds, believe it or not, even though it looks like a torture device. It hurts going on but patients get used to it after a few minutes. (“It’s like a tight hat,” one of the surgeons likes to tell patients, which may or may not be a comforting analogy.)
Another problem is that the radiation often merely controls the tumor’s growth rather than getting rid of it. (Tumor control may be all that’s needed in many cases, but the idea does take some getting used to. Imagine a preoperative visit with the neurosurgeon: “Your tumor may never go away, but you’ll be able to live with it just the way it is.”) Also, stereotactic radiosurgery can only handle relatively small tumors, so only some patients are candidates in the first place.
Some traditional neurosurgeons scoffed at the Gamma Knife during my training. Partly, they may have felt a bit threatened by it, as patients steered clear of their offices and toward this bloodless option, and partly they remained skeptical of its efficacy. I was an easy convert, though, because I saw how pleasant the patient experience was, comparatively speaking. I would certainly choose it for myself in the right situation.
Some of the residents had fun taking little jabs at the Gamma Knife and stereotactic radiosurgery, precisely because of how tidy and nonsurgical the whole thing was. One of the more sardonically minded ones among us came up with a grading scale for the so-called pin site wounds, which were the small puncture sites (two in the forehead, two in the back of the head) left behind when the metal frame came off. These sites were simply covered with Band-Aids, which were removed the following morning before the patient went home. These pin holes healed just fine and were barely visible days later. On rare occasion, though, a pin site would ooze more than usual just as the frame was removed, requiring a single stitch. This was about as traumatic as the treatment (surgery) could get.
This Gamma Knife pin site grading scale, if I recall correctly, was a four-point scale as follows:
The “moribund” category was co-opted directly from other familiar, more hard-core neurosurgical grading scales in which moribund actually is a real and distinct possibility.
This pin site grading scale was recounted among the residents numerous times over a few-week time period, always eliciting uncontrolled laughter at the word “moribund,” until the whole thing fizzled out, landing in the rich wastebasket of other forgotten oral histories of neurosurgical residency.
Our hospital was known worldwide as a center of excellence for Gamma Knife work. We had the very first Gamma Knife in the country (the first in the world was developed by neurosurgeon Lars Leksell of Sweden in the 1960s) and we even had two of these multimillion-dollar units by the time of my residency. Along with holding courses for other U.S. neurosurgeons who were interested in participating in (or felt obligated to participate in) this bloodless trend, we had at least a couple foreign fellows learning the ropes at any given time so that they could spread the word across the world. Their camaraderie lightened the resident learning experience at times, as did the omnipresent flavored coffees and pleasant nurses, who knew they had some of the greatest nursing jobs around, with regular weekdays, normal hours, no mess, and easy patients. These foreign fellows were smart doctors but were usually new to the American experience and lingo, a deficit that tended to belie their true intelligence.
One of the Chinese fellows remained puzzled for months by a mysterious word used daily by the nurses in their instructions to patients who were adjusting the position of their bodies within the Gamma Knife unit. After he got to know me he felt comfortable asking, “What means this, ‘scoot’?” And then a quick follow-up question, regarding a second mystery word commonly used in the same phrase as
scoot:
What means “butt”?
A Japanese fellow was equally puzzled when one of the nurses asked if he wanted to order a sandwich for lunch along with everyone else. He answered in the affirmative but then got stuck in coming up with an appropriate sandwich order, off the cuff and under pressure. The nurse prompted him: So what can I get for you, a turkey sandwich, ham sandwich, uh…knuckle sandwich? He asked for turkey but then turned to me for quiet clarification of the knuckle option that he had passed on.
This same fellow knew of Baskin-Robbins as “31,” pronounced “tha-tee one,” which is how it is referred to in Japan. The topic of Baskin-Robbins’ ice cream came up during one of our cases (there’s plenty of intermittent downtime during a Gamma Knife case when short, random, unimportant conversations can be held), and I informed him that we call it Baskin-Robbins, not 31, in the United States. In our country, I explained, the 31—a historical reference to the number of flavors—is more of an afterthought or a kind of subtitle. He paused for a moment and, hungry for more of such tutelage, asked what the true name for 7-Eleven was in the United States.
Despite the jokes, the soft ridicule, and the strangely nonsurgical feel of this surgery, the fact is that the Gamma Knife revolutionized neurosurgery, and remains a real boon for patients who otherwise might have had to endure a far less pleasant experience compared to lying in the Gamma Knife unit for an hour or two, listening to music of their choosing and exchanging pleasantries with the staff.
Given the tremendous advantages of treating a tumor with the Gamma Knife, the surgeons who performed stereotactic radiosurgery could be rather zealot-like in the promotion of their subspecialty within the world of neurosurgery, and justifiably so. They were amazingly prolific in the neurosurgery journals. Everything that had been written in the past about the efficacy of traditional surgery could be documented anew through the Gamma Knife lens, a different article for each different type of tumor or other category of disease. You could have one set of articles on technique and philosophy, another on early follow-up, and a later set on longer-term follow-up. The guys on the other side of the fence, though, could be equally zealous in their competitive promotion of maximal invasion. The grandstanding was most impressive at the national neurosurgery conventions.
An example that sticks out most in my mind was an opening talk that featured aggressive, complex, transfacial (“through the face”) approaches to tumors at the base of the skull. It was delivered by a well-known neurosurgeon in the largest of the lecture halls. Every attendee received a pair of flimsy paper-framed 3-D glasses upon entering the room. This brought me back to the last time I wore 3-D glasses, which was for the 3-D version of the movie
Jaws
in the early 1980s. In this movie, the shark appears to swim into the audience with its mouth wide open, causing everyone to jerk their head backward like a fool, myself included. I wondered what might assault the audience during this show. Expectations ran high as the lights were dimmed, and this guy did not disappoint.
His lecture was a multimedia tour de force, most notable for the awesome 3-D skull models that demonstrated his technique, step-by-step, with pieces of the midface and underlying bone structure flying through the air toward the audience. These various human face parts were the hapless color-coded victims of every “trans” in the title of each surgical approach. The postop scans were undeniably impressive: not a single leftover speck of tumor in the deepest recesses of the skull—a classic neurosurgical “look what I can do” show-and-tell. We got to see the patients’ faces, too, all put back together and smiling, after things had fully healed and they had returned to their human appearance. My skeptical side wondered about the patients he decided not to show us. When the lights came back on I looked around at the neurosurgeons seated around me. A few of the older private practice guys were shaking their heads as if to say, “You won’t see me doing that kind of crazy stuff.”