This little boy halfway around the world in pain and tethered to a bed awakened me and spurred my growth into an advocate for relieving all pain wherever, whenever. He’ll never know the lasting effect his image had on my career.
HOSPITALS HOUSED IN SMALL quarters have the advantage of frequent, incidental contact between colleagues. The hospital hallway is a common meeting place for physicians. On any given day, I encounter colleagues from a dozen or more different specialties. “How are you? By the way, I have a patient . . .” Known as a curbside consultation, this kind of informal interaction allows a physician to obtain information or advice directly from another physician about the management of a particular patient with a particular problem.
Hallway meetings tend to drive the hospital bureaucrats crazy since they’re not set up for documentation and billing. But they are a way of life in hospitals and clinics. The curbside consult gives doctors a chance to find solutions more quickly and more easily. In our time of big-box hospitals, however, chance encounters are less frequent, and in this era of medicine—when seemingly every move requires copious documentation—they are generally frowned upon.
Hearing my name called out in the parking lot, I turned to see a neurosurgical colleague walking toward me with two women. After introductions, I learned that the younger of the two, Susan, had been a neurosurgery patient decades earlier, in her native California. Now a nurse at a nearby facility, Susan had come in, accompanied by her sister, for evaluation by my colleague.
When Susan was young, a shunt had been placed in her head. That’s medical jargon for the solution to suffering from hydrocephalus—literally, “water head.” A blockage prevented cerebrospinal fluid (CSF), the liquid shock absorber produced inside her brain, from flowing out and down along the spinal cord to be reabsorbed. Congenital hydrocephalus results from anatomical abnormalities, formed during the brain’s development, that alter the free flow of CSF. Acquired hydrocephalus develops after trauma, especially when bleeding is involved (such as from a ruptured brain aneurysm), or from tumors obstructing the path of the fluid.
In the very young, hydrocephalus causes the head to grow abnormally large. With age the skull fully fuses, and with expansion of the head not possible, pressure builds—early on presenting as a headache or vomiting, but ultimately leading to death if not treated. A ventriculoperitoneal (VP) shunt is a plastic tube that diverts accumulating fluid in the brain to the belly. Anesthesia for patients with increased intracranial pressure (ICP) is tricky. Vomiting boosts the risk of aspiration pneumonitis, and inhaled anesthesia enhances blood flow to the brain, further adding to the ICP and increasing the risk of injury or death.
Susan had fared well until this moment, more than two decades later, when she began to suffer from headaches and sought help. During her appointment, her surgeon came in search of me.
“You’re just the person I was looking for,” he said. “It’s not a shunt malfunction.”
These shunts have a propensity to clog, necessitating a surgical revision. But the neurosurgeon had ruled out a malfunction, declaring that by his examination, the shunt was flowing well. Something else was causing Susan’s pain.
I led Susan and her sister to a conference room within the anesthesia offices. They sat on a couch across from me. As I listened to Susan’s story, I couldn’t help but notice the magnitude of her pain. She occasionally winced, and the whole time her right eye squinted more than her left. After I asked where the pain was worst, Susan pointed to an area, and I leaned forward and tapped that spot on her head with my index finger. I felt the shunt tract, the tube coursing under her skin, off to one side, above and behind her ear. When I pressed on one particular spot, her head jolted back as I elicited a bolt of pain.
Susan suffered from a “trigger point”—technically a myofascial trigger point, more commonly known as a “muscle knot.” Essentially, a small bundle of muscle had gone rogue and tightly contracted without relaxation, resulting in the stabbing pain that caused her to jump when I pushed on it. Many millions suffer every year from this poorly understood cause of pain.
I said to Susan: “Well, we can do this the official way, and I’ll give you the number of our pain clinic, and they’ll schedule an appointment and take care of it. Or we can forgo all the formality and I can treat it myself here and now.”
Without a moment’s hesitation, Susan implored me to end her pain.
A swab of alcohol, a syringe, a needle thinner than a common sewing needle, and an injection of just a bit of local anesthetic into the site of pain, the muscle knot, is all it took.
The change in Susan occurred instantly as I injected a contemporary derivative of cocaine, one that offers no central pleasure effect in the brain. The tension in her scalp and the wrinkles of her forehead visibly released. Her face flashed a momentary sense of disbelief; then a smile grew as the pain washed away.
Susan and her sister left, pain-free. Sometimes one injection isn’t sufficient to ease the trigger point, and additional injections are necessary. But Susan never complained again after the first injection.
I’M NO CRUSADER. That honor belongs to colleagues and friends who have dedicated their careers to abolishing pain using new technology combined with old drugs, and old techniques combined with new drugs. These clinicians/researchers promoted the use of PCA (patient-controlled analgesia) using the standard narcotics linked with a computer-modulated delivery system, allowing patients to be masters of their own destiny. No more pushing a call button to summon a nurse.
The PCA system has been a great boon for patients. I mean no disrespect to nurses, for I marvel at their skills, their dedication, and their compassion. But if I order one milligram of morphine every two hours, the patient may not receive exactly that—the dose may be partially lost during the steps of drawing it into the syringe, proceeding to the room, de-airing the syringe, and administering it to the patient in pain. In addition, nurses have multiple patients with the same needs. Delay or dose inadequacy, though not intentional or immediately preventable, causes patients to suffer more than is necessary, and the cycle repeats. With PCA, the patient still pushes a button, but instead of the nurse’s call button, it’s a computer button that sends a prespecified dose of narcotic directly and instantaneously into the patient’s IV. The computer is programmed to inject a specified number of doses within a specified time span, in order to prevent overdosing.
The cost for the right to pain relief is pleasure. Not too little, but rather too much. Narcotics induce pleasure by turning on dopamine, and inducing pleasure this way can ultimately lead to more pain, both physical and psychological. With time, increasing doses are needed to accomplish the same pain relief, leading to medication abuse and addiction. And these medications don’t specifically and solely target the source of pain. Narcotics, or opioids—the terms are used interchangeably—possess whole-body effects that are not always desirable, such as lethargy, nausea, and constipation.
The seeds of narcotic addiction were sown long ago. The sixteenth-century physician Philippus Aureolus Theophrastus Bombastus von Hohenheim considered himself greater than the first-century Roman physician Celsus and thus took the name Paracelsus. In the 1500s, Paracelsus discovered that opium, insoluble in water, is soluble in alcohol. The early recipes for the mixture he named “laudanum”—from the Latin “to praise”—also included musk, saffron, cinnamon, and cloves. Laudanum was used for centuries for pain relief. It was even described as a sleep aid by Mary Shelley in Frankenstein.
During the Civil War, Dr. A. W. Chase—a traveling physician who published a lengthy list of medically related recipes—simplified laudanum to opium and alcohol only. In the Victorian era, the use of laudanum for recreational impairment became popular, just as the use of ether had been several decades earlier. In England, Godfrey’s Cordial (a.k.a. “Mother’s Friend”) and in America, Mrs. Winslow’s Soothing Syrup, were laudanum mixtures intended for children. Without oversight or regulation, this concoction contained mor
e opium than was recommended for even a full-sized adult. Not surprisingly, reports of overdoses and deaths followed, eventually leading to the Harrison Act of 1914, which eliminated the ungoverned sale of over-the-counter narcotics.
The epidemic of narcotics-related deaths persists today with abundant back-alley, black-market sales. For example, heroin is easy and inexpensive to produce, creating expressways nicknamed “heroin highways” because a buy in certain parts of cities is as quick as the off and on ramps can be navigated. Imprudent prescriptions by physicians remain widespread. Medication orders include dose and frequency, both specified in excess of sensible limits. Over my career I have injected or prescribed literally gallons of morphine and its derivatives, almost all within the walls of a health care setting, since I rarely write prescriptions for addictive medications. I don’t believe I have ever created an addict through my care, although it would be naïve of me to boast of complete innocence. I’m sure I’ve been the first to inject narcotics, albeit under anesthesia, into an addict-to-be.
In our present addiction craze, a seesaw battle seems to exist between overused, prescribed narcotics and illicit drugs. And this is a craze, an epidemic: every eleven minutes a death by overdose occurs. More people die by overdose each year than by falls, car accidents, or gunshots. Only when a celebrity dies does this epidemic reach the eyes of the media, where it is portrayed as a curse of fame, but soon after the VIP’s death it is forgotten. As medical societies or the government move to curb narcotic prescriptions, street sales appear to pick up. Just saying no is not the answer. Overall, narcotic addiction is on the rise.
One radical thought is to limit the writing of narcotic prescriptions to specialties that are invested in pain relief—anesthesiology and pain management—and then make the practitioners in those specialties accountable for their prescriptions. Given the glut of required bureaucratic paperwork, physicians find the regulations for prescribing narcotic pain relief a time-consuming burden, with the result that it’s easier to write a single prescription for ninety tabs intended to cover a three-month period than to write a new thirty-day prescription each month. Refills are not allowed on narcotic prescriptions. Again, the law of unintended consequences comes into play. Perhaps a policy that eases access through pharmacies but restricts the number of pills dispensed should be considered.
The goal of pain relief is obvious. Physicians treating pain should use techniques and medications that target the source of the pain while avoiding medications that have whole-body implications or that trigger the pleasure neurotransmitter dopamine, which potentially leads to dependence.
FINDING THE APPROPRIATE TREATMENT for the tethered boy in China nagged at me. My opportunity to shine came when I treated a man suffering a similar condition. Mike was born with pectus excavatum, a sunken chest. If he was lying flat, a cup of water would fill the hollow without flowing off his chest. Aside from its physical appearance, pectus excavatum can adversely affect breathing and the function of the heart, which is squeezed by the deformed sternum, the breastbone.
Few surgeries create as much postanesthesia pain as a pectus excavatum repair. All ribs are surgically detached from the breastbone, which is then fractured and re-formed with normal appearance. After the procedure, every breath and every movement of the torso hurts. The solution to Mike’s pain wasn’t to blast him with so much narcotic that he would pass the days obtunded, but to relieve the pain closer to its source, the chest.
With Mike’s back to me, I inserted a needle into the space between his vertebrae at a point between his shoulder blades, passed a catheter through the needle, and placed the tip of the catheter in the space outside of his spinal cord but inside the spinal canal, giving him a thoracic epidural. Local anesthetic constantly bathes all the nerves emerging from the spinal cord at this level.
Visiting Mike after his surgery in the recovery room pleased me. He was awake and comfortable. In striving to eliminate pain for Mike, I hit a home run. Unlike that writhing boy in China, a few hours after surgery Mike sat in a bedside chair and spoke with me.
Not all cases end as well. Not all pain in all patients is eliminated. But that boy in China whose writhing I witnessed—a boy whose name I never learned—redirected my career and defined my goal: to wipe away all pain.
CHAPTER 12
A Brain Trapped in a Box
ANOTHER STAGE IN MY PAIN RELIEF AWAKENING came during a vacation amid woods and water. Battling insomnia, I awoke hours before daybreak. My sleep for the night was over. With little else to do, and since staring at the ceiling seemed fruitless, I moved to the couch and turned on the TV. The choices were slim: watch the pitch for how to grow six-pack abs without breaking a sweat or succumb to purchasing a forever-sharp knife, able to cut nails and then slice a tomato.
I clicked on the only decent choice at the time: a documentary on the local public television station. The topic was communication in the cognitively impaired, people unable to speak or convey their thoughts to others. The scenes and settings of the show were so vivid that the faces and places remain indelible in my mind to this day. Despite repeated attempts to locate a reference for the film, I have found nothing. Sometimes I wonder whether that TV program was a figment from the dreamworld—a personal message intended solely for my growth as a doctor.
In the documentary, a man afflicted with cerebral palsy, his movements jerky and his speech low and drawled, detailed his life and his tribulations. I still see the image of him clearly, sitting in a small courtyard with a knife in his hand, whittling ever so slowly, his forearms moving like two gears in mesh—a short burst of motion, then a pause, his eyes wide open behind wide-rimmed glasses, his mouth constantly open, not closing even as he tried to speak. The scene changed to him sitting in front of his computer. He spoke about his condition. His newfound computer-generated voice verbalized the words he conceived but couldn’t say. Unable to use his fingers, and instead gripping a pencil in each fist, he didn’t tap; he hammered the letters of his keyboard and the icons on a touch screen that represented common phrases. The computer responded by vocalizing his thoughts. The man with CP spoke of being “a brain trapped in a box.”
AS I WATCHED, I ENVISIONED myself during the many times I had stood next to a cart, looking at a patient in the recovery room or in the ICU and listening to moans I judged as too soft to indicate substantial pain. With the patient unable to advocate for himself, I routinely asked those present (families, nurses, other physicians): “Do you think it’s pain?” The answer that almost always followed was “No.”
A common cause of affliction in patients who are unable to advocate for themselves is cerebral palsy. The Centers for Disease Control and Prevention describes cerebral palsy as “a group of disorders that affect a person’s ability to move and maintain balance and posture” and “the most common motor disability in childhood.” Abnormal brain development or damage to the developing brain (caused by, for example, loss of oxygen supply) is a broad description that encompasses a multitude of potential causes of CP. Traumatic brain injury, brain tumors, seizures, and numerous other degenerative diseases might cause an inability to move smoothly and, more important, to communicate. With adulthood, stroke and burst cerebral aneurysms enter as causes of brain injury.
The night of my insomnia, my revelation placed the onus for the relief of pain on the shoulders of the person holding the ultimate responsibility: me.
One patient in particular came to mind: David, a young man with a body twisted tight as a result of CP. His father was an acquaintance from my neighborhood and knew that I was an anesthesiologist at the hospital of his son’s scheduled surgery. I don’t recall the cause of David’s CP—whether he’d been born too early, or there had been an infection during his development, or birth trauma had led to a loss of vital oxygen. But David’s newborn brain never overcame the hypoxic insult he suffered, never healed, and failed to develop normally. Now, deep into his second decade, David’s brain fired in uncoordinated bursts, prohibiti
ng the fluid motion necessary to accomplish the complex tasks we take for granted, such as tying a shoe or lifting a fork to the mouth. Or speaking.
After what I believed to be a minor surgical procedure, David lay on the cart, gently moaning. His movements—those he was capable of making—were slow and ratchet-like, leaving him unable to walk, write, or speak. On his cart, he assumed a birdlike posture. He lay on his back with his arms flat on the bed and slightly abducted (extended out from his chest) bringing his elbows to rest on the sheet six inches or so from his ribs. David’s elbows were flexed, tightly raising his forearms toward his head, his hands coming to rest about a foot to the side of each of his ears. He wore a neat beard, evidence of someone having provided loving care. His head was turned to one side, and his mouth was open like that of a chirping bird, forming an almost “O,” his tongue visible.
His moan came in soft breaks. His hands tremored slightly and briefly, and then a short rest ensued. He tried to turn his head to the opposite side but didn’t quite make it and returned to the side where I stood. His eyes were fixed on me. Then the cycle repeated. (These patients are unable to smile or grimace, so the FACES scale of pain assessment is not accurate.)
I spoke to David’s parents in the waiting room, informing them that from my anesthesia perspective, all had gone well. I escorted them to their son’s side in the recovery room with the intention of gaining their insight about David. I needed some direction regarding additional pain relief needs. I had provided a dose of narcotic pain reliever and thought that was sufficient, given the nature of the surgery. Upon seeing his parents, and after a deep inward breath, David appeared to try to force out his thoughts, but to no avail; his voice uttered deep grunts, and his tremor grew more pronounced.
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