It is not known if any specific trauma brought this on, but the patient’s history notes that she described herself as accident-prone and had broken this arm, as well as having incurred other injuries that may have contributed to the development of the condition.
What is the treatment?
Primarily symptomatic: physical therapy, pain management. The disease is most devastating when it begins early, as in this case. Over time, as the stenosis continues to narrow the vertebral passage, it may begin to impinge on the spinal cord itself—an emergency requiring immediate surgery to open up the vertebral spaces and try to preserve the cord. Patients must be monitored for signs of cord impingement such as loss of motor skills.
Married or single?
Single.
The relationship with Kurt—the long, false relationship—was over, I realized. Of course, of course, of course. I had deluded myself about the relationship, just as I had deluded myself about the pain. The two had seemed so confusing—confusing and confused—but now they were clear. My pain was not a manifestation of a personal, spiritual, or romantic problem and could not be alleviated by thinking of it that way; it was a biological condition, plain for a stranger to see.
“Questions?” the doctor said affably, and sat down at his desk. “Come now. What about what I said don’t you understand?”
“Will it get better over time?”
“It’s degenerative.”
“Can it be fixed?”
“No, it’s structural. Do you see?” He paused. “You’d need a new spine.” He smiled.
I almost asked whether as it degenerated, I would have more pain, but I was too afraid of the answer.
I broke up with Kurt that night.
III
TERRIBLE ALCHEMY:
Pain as Disease
A PARTICULAR CHAMBER IN HELL
In an antique illustration of hell I saw once, each of the damned had his or her own chamber, equipped with particular instruments of torture designed to fit—or rather, not fit, as the case was—the inhabitants, from the long rack for the short woman to the Procrustean bed for the giant fellow. It was a clever painting, a vertical cross section, like the bisected rooms of a dollhouse. Thick, damp walls separated each grotto so that if the damned could hear the screams of others, they would sound faint and faraway, and anyway, who can listen with ears filled with one’s own screams? No one came, and no one left. Even the devils seemed to have abandoned the place, leaving pain to do its perpetual work. Or perhaps the devils were pain itself: the invisible agent of agony writ on each inhabitant’s face.
Pain is eerily common. A consensus estimate, widely used in the field, is that as many as one in five Americans suffers from chronic pain. Pain costs society as a whole billions of dollars in disability and lost productivity. Demographics have changed as baby boomers age, so that a growing portion of the population is at risk for the diseases that lead to chronic pain. Life expectancy continues to increase, but who wants a life lasting 120 years if the final third of it is spent in daily pain?
Although pain is one of the primary complaints for which people seek medical care in America, there are only 2,500 board-certified pain specialists in the United States—roughly one doctor for every 25,000 patients with chronic pain. According to a 2006 survey, just 5 percent of chronic pain patients ever see a pain specialist. Consequentially, the treatment of pain remains primarily in the hands of ordinary physicians, most of whom know little about pain and don’t want or seek to know more. Medical schools and textbooks give the subject scant attention. Pain medicine as a specialty did not even exist until after World War II, when Dr. John J. Bonica—an anesthesiologist who had treated wounded soldiers—wrote the first comprehensive textbook on pain management in 1953 and was instrumental in the creation of the International Association for the Study of Pain, the first medical organization devoted to pain.
In the sixteenth century, Ambroise Paré defined the task of medicine as “cure occasionally, relieve often, console always.” How could pain have strayed from such a compelling imperative?
The reason that pain per se has not, until recently, been a focus of research is that pain was understood as a symptom of an underlying disease. On this theory, the remedy was plain: treat the disease, and the pain should take care of itself. Specializing in pain medicine seemed as absurd as specializing in fever—a form of making the cart lead the horse. Yet the actual experience of patients frequently belied the assumption that pain was merely a symptom, for chronic pain often outlives its original causes, worsens over time, and takes on a puzzling life of its own.
The idea that pain leads a life of its own turns out to be not a metaphor, but a biological reality. There is increasing evidence that over time, untreated pain eventually rewrites the central nervous system, causing pathological changes to the brain and spinal cord, and that these in turn cause greater pain. Even more disturbingly, recent evidence suggests that prolonged pain actually damages parts of the brain, including those involved in cognition.
One way of explaining this shift is to say that pain itself can now be a diagnosis. “Ninety-eight percent of doctors still say pain is a symptom, not a disease,” Scott Fishman explained to me. Dr. Fishman is chief of the Division of Pain Medicine at the University of California, Davis; head of the American Pain Foundation, an important patient advocacy group; and the author of The War on Pain, a genuinely helpful self-help book (that I wish I had read when I first got pain!). “Yes, pain is usually a secondary disease stemming from an underlying problem, just as blindness can be caused by diabetes. But that doesn’t mean it isn’t real and doesn’t need to be treated. And over time, it often becomes the primary disease.”
At first glance, the distinction between diagnosis and symptom might seem merely semantic. But in the medical context, semantics have proved to be of great importance. Getting depression recognized as a disease was half the battle in finding treatments and making them accessible to patients. The real question, then, is practical: What is the value of regarding pain as a disease? What are the results of doing so or not doing so?
Categorizing pain as a disease underlines the gravity of the threat it poses. “Pain can kill” is a motto of the new field of pain medicine—a motto that is not hyperbole. Far from being merely an unpleasant experience that people should endure with a stiff upper lip, prolonged pain turns out to actually harm the body by unleashing a cascade of neurochemical and hormonal changes that can adversely affect healing, immunity, and kidney function.
Evidence suggests that patients treated with adequate doses of opiates heal more quickly from surgery. Pain keeps people in bed after an operation, increasing the risks of problems such as blood clots. Chest and pulmonary injuries are associated with a high rate of death in part because the pain they cause makes patients breathe more shallowly. The air in their lungs stagnates and permits ordinarily harmless germs to settle in and cause diseases like pneumonia, necessitating the use of a respirator—which, in turn, introduces further risk of infection.
Adequate pain treatment may be important for general health and recovery from disease. Many of the hormones that regulate the processing of pain in the brain are also critical in regulating immune function. Stress hormones like cortisol increase with pain and impair immunity. Pain and immunity are both regulated by endorphins and local mediators of inflammation.
How could treating pain be controversial? one might ask. Why wouldn’t it be treated? Who are the opponents of relief? Very few physicians would declare that they don’t believe chronic pain exists, and although some might profess ignorance, few would say they are unwilling to treat chronic pain. Likewise, few members of the public would advocate suffering (especially if it’s their own). Yet conceptions about pain, like those about pleasure, are deeply entrenched—culturally, socially, and psychologically. Chronic pain is a disease that resists measurement, and patients’ self-reports are easy to dismiss or disbelieve. The cultural evolution of the understanding of
depression may serve as a model for that of pain. Depression was once treated with denial (as not a real, medical problem), dismissal (as irrational emotion), and stigmatization (as something shameful that could and should be overcome). Eventually these attitudes gave way to the recognition of depression as an organically based, potentially fatal disease with both subjective psychological and objective physiological components.
If arriving at a new medical understanding of pain has been a difficult and protracted process, disseminating the knowledge will be more so. Although there is a scientific consensus about the reality of the disease, it has not gained widespread acceptance outside the small circle of pain specialists.
“My patients have seen an average of five doctors about their condition before they get to me—and some have seen a dozen, and gotten complicated and contradictory diagnoses—yet for the most part, their pain has not been treated in the most obvious ways,” Dr. Fishman said. California and other states have mandated continuing education in pain management as a requirement for renewing a medical license, following court verdicts such as a $1.5 million judgment awarded in 2001 against a San Francisco–area internist for having undertreated a terminally ill patient’s pain. In that case, the internist’s defense team argued that he had never received any specific training in pain management and that he had treated his patient as best he knew how—which is probably true.
Jim Mickle, a family doctor in rural Pennsylvania (and my friend Cynthia’s husband), described the leeriness ordinary physicians feel about treating pain: “Is it objective or subjective? How do you know you’re not being tricked or taken advantage of to get narcotics? Chronic pain patients are, generally, well—a pain. Most doctors’ reaction to a patient with chronic pain is to try to pass them off to someone who’s sympathetic. Or just to try to pass them off.”
What makes a doctor sympathetic to pain? Jim thought about it. “Someone who has pain himself,” he said. “Or has an intellectual interest—who isn’t interested in immediate results, doesn’t want to make money, has a lot of degrees. We’ve had a few in this area, but then they get all the pain patients sent to them, and eventually they burn out and quit.”
THE SHAPE-SHIFTER
Every pain patient is a testament to the dangers of the conservative wait-it-out approach to pain, as some weeks spent observing treatment at a pain clinic demonstrated. Inside the cement tower of the pain clinic in downtown Boston, all sights and sounds of the neighborhood—the swans in the Public Garden, the lanterns of Chinatown—disappeared, collapsing into a small examining room in which there was only this triad: the doctor, the patient, and pain. Of these, as the daily parade of desperation and diagnoses made evident, it was pain whose presence predominated.
What the majority of doctors see in a chronic pain patient is an overwhelming, off-putting ruin: a ruined body and a ruined life. “Chronic pain is like water damage to a house,” Dr. Daniel B. Carr, then the medical director of the New England Medical Center Pain Management Center, told me. “If it goes on long enough, the house collapses.” It is his job to rescue the crushed person within, to locate the original source of pain—the leak, the structural instability—and begin to rebuild, psychically, psychologically, socially.
“Some of my patients are on the border of human life.” He sighed. “The mistake physicians make with chronic pain patients is that they assume that if they can’t fix most of the patients’ problems, they can’t fix anything. They’re too overwhelmed to find the treatable piece.”
Dr. Carr’s interest in pain began as an intellectual one. After training as an internist and an endocrinologist, in 1981 he published the landmark study of runners that showed that exercise stimulates beta-endorphin production. He hypothesized that the increased endorphins lead to a runner’s high that temporarily anesthetizes the runner—the stress-induced analgesia of our ancestors running from the tiger. If the runner’s high is an example of how a healthy body successfully modulates pain, Dr. Carr began to wonder, then what abnormality leads to chronic pain? One way to think of pain is to see it as the presence of a disease—a nervous system gone amok—but another way to think about it is as an absence of health: the failure of the normal controls that successfully modulate ordinary pain.
Dr. Carr decided to do a third residency in anesthesia and pain medicine, and he became a founder of the multidisciplinary pain center at Massachusetts General Hospital and a director of the American Pain Society. Pain clinics are scarce: the time-consuming nature of patient care, and the lack of quick moneymaking procedures on which insurance reimbursement systems are based, means that these clinics tend to lose money, and they maintain a precarious existence.
I had had pain for a few years when I was randomly offered a magazine assignment to write about chronic pain. The assignment had been one of several article possibilities: personal bankruptcy, a murder, a profile of a celebrity I pretended to have heard of. My editor and I were at a Japanese restaurant in midtown; I was poking at my sushi, thinking wistfully about how hungry I always used to be, before I had pain, and how I used to love being taken to lunch and ordering lots of courses. Through the glaze of misery I heard the editor’s idea. “Pain?” I said, waking up. “Does pain treatment even work?”
After I had finally gotten a diagnosis, I tried some pain treatment, which mitigated but decidedly failed to resolve my pain. I had no confidence in any treatment methods because I didn’t understand how they were supposed to work, and I didn’t want to understand—I just wanted to be cured. But for the first time, in Dr. Carr’s clinic, observing other patients’ treatment, I began to wonder about the nature of pain itself.
Before going to the clinic each morning to observe Dr. Carr for my article, I dressed carefully in a skirt and pointy shoes, anxious that the patients not realize that I am one of them. Still, it surprised me that none of them saw it, this scarlet P on my chest. I smiled tightly when the patients caught my eye. “Sounds dreadful!” I would say when they regaled me with their stories. “Hope you get better!”—I haven’t.—“Thanks for letting me observe!”
“If for some disease a great many different remedies are proposed, then it means that the disease is incurable,” a character quips in a Chekhov play—a truth surely illustrated in the field of pain management. A pain doctor’s kit has plenty of tools. There are drugs, such as antidepressants, antiseizures, anti-inflammatories, opiates, and opioids. (Opioids is the general term both for natural opiates derived from the opium poppy and for their synthetic counterparts, such as methadone and OxyContin, even though opiates is commonly—if incorrectly—used to refer to both.) There is also physical therapy, traction (to reduce pressure in the spine), chiropractic manipulation, steroid and other kinds of injections, surgery, and psychological treatments and techniques such as hypnosis, stress management, biofeedback, acupuncture, meditation, and massage.
Rarely do any of these prove to be a cure, but they can help modulate pain, offering patients “a toehold” to climb out of chronic pain syndrome, Dr. Carr said, “or at least slow the descent.” Without intervention, the descent can be steep indeed. Most people with chronic pain sleep poorly (a problem exacerbated by opioid medications, which fragment sleep). Over time, sleep deprivation—a time-tested form of torture—can create the symptoms of mental illness. Yet insomnia can be treated with medication such as trazodone (which, unlike many sleeping pills, is not physically addictive, and the effects of which do not generally diminish over time). Many pain syndromes cause deconditioning and guarding behavior of the afflicted area, which can lead to muscle atrophy, which further impairs mobility and causes greater pain; physical therapy can intervene in the cycle. Pain can cause depression, which in turn causes more pain, yet depression can often be treated.
Dr. Carr’s patients acquired their pain through all manner of diseases or accidents. They suffer from migraines, multiple sclerosis, rheumatoid arthritis, osteoarthritis, and fibromyalgia. And many people who suffer from chronic pain have no specific di
agnosis at all. Back pain, for example, is one of the most common reasons for visiting a medical clinic, yet studies have suggested that for up to 85 percent of such cases, no definite diagnosis can be made. People whose backs look normal on a scan can feel extraordinary pain, and people with scans that indicate problems often feel fine. The back is too tightly wired to distinguish nerve from joint from muscular pain. This causes patients much unhappiness. What they don’t realize, however, is that it is not necessary to have a definite diagnosis in order to get well; treatment options are sufficiently limited that a patient can systematically work through each one.
Of all the patients of Dr. Carr whose treatment I observed, the last patient on one day, Lee Burke, was perhaps the one whose story provided the most insight into the current state of contemporary pain management because her diagnosis and treatment turned out to be so simple, while the fallacies that worked against the diagnosis being made earlier were so numerous and so revealing of the problems of pain treatment.
Seven years earlier, Lee told Dr. Carr, she had learned that she had one of the most survivable varieties of brain tumor, a growth known as an acoustic neuroma that nestled behind her left ear. The tumor was benign, but its effects were not: as it grew, it threatened to squash useful parts of her brain. The recovery period from the surgery to remove it was supposed to be a mere seven weeks. Instead, she said, she awoke from surgery with an unforeseen problem: headaches—lancinating, lightning-hot pain—that knocked her out for periods ranging from four hours to four days. She lost her job as vice president of human resources at a real estate firm. A delicate-featured fifty-six-year-old woman in a blue cotton sweater that picked up the blue of her eyes and the gray in her hair, she cried as she told Dr. Carr how pain came between her and her husband when her headaches kept her in bed. She left him, and their money, and their million-dollar condominium in downtown Boston.
The Pain Chronicles Page 13
