Total recovery, p.6
Total Recovery, page 6
After Billy had been on CSM for a month, his energy was slightly improved, as were the intensity of his headaches, but he still had headaches every day. Prior to my working with him, Billy had tried numerous headache medications, without success. Early on, I prescribed several others that didn’t relieve his headaches either. I even resorted to an intravenous migraine medication, DHE-45. It worked better than the others, but only temporarily. It was encouraging that Billy’s energy was continuing to improve, but the headaches persisted. Any one of these meds should have been effective. It was strange that none of them was having an effect. I couldn’t understand why.
After about 3 months, I decided to try another injection of DHE-45. This time it worked. It was as if someone had turned off a faucet with a constant drip of pain and now it was gone—not simply improved, gone. Billy was enormously relieved, but I was even more mystified. Trying DHE-45 again, when it hadn’t helped before, seemed like a long shot. At best, I thought we might be able to combine it with other medications to keep the headaches in check. Why on earth had it worked so successfully this time?
And then I realized . . . In the last 3 months, the cholestyramine had significantly reduced the toxic load in his body. Presumably, as the toxins were eliminated, the inflammatory condition in his brain had subsided as well. Once that happened, he was suddenly responsive to a medication that had had only minimal effect before. If that was true, it could mean inflammation was a significant clue.
How often did pain patients fail to respond to medication as expected because of an undiagnosed state of inflammation? If pain was a symptom of inflammation, we had been looking in the wrong direction all these years. For generations, we had been using nerve blocks, narcotics, even amputation, to try to stop chronic pain. What if we’d been looking at it wrong?
If relatively minor infections and toxins—lingering in the body, nearly dormant—could have a cumulative inflammatory effect, then a patient’s history was far more vital than any of us had expected. What other connections would we discover? The possibilities were endless. A lot of things could cause inflammation, not just infections. At the time, I was so astonished I had not yet begun to realize the implications.
In the meantime, Billy had tentatively returned to his life. His enthusiasm for his dreams had returned, and he was starting to think about college. When winter came back around, Travis texted him with a weather report from the slopes. “Time to shred the powder, bro!”
And this time, Billy was up for it. At the top of the slope 3 years later, he had a moment of doubt—not sure what kind of pain awaited him—then he reminded himself he was a true badass, and he dropped off the edge. No 180s, no fakies, no shifties; he just followed a smooth S-curve down. It couldn’t have lasted more than 5 seconds, but not one of those seconds was painful.
If the moment brought tears of relief to Billy’s eyes, the impenetrable black of his helmet kept the secret. What the rest of the world could see was that, when Travis slid up next to him on his board, they both pumped their fists in the air.
And then we got an unexpected gift. In his first semester at college, Billy ended up in a dorm room that turned out to have an infestation of mold on the ceiling. After 6 months without symptoms, his headaches came roaring back. He felt tired and couldn’t concentrate. His parents had him moved to a different dorm, and I prescribed another round of cholestyramine. In 3 weeks, he was back to his old self again. Without any need of drugs for ADD, his ability to focus was normal and his pain was gone.
I was delighted that we had found a simple, reliable way to help Billy. By eliminating the lingering inflammation, we had cleared the way for his body to heal. But his case left me wondering. How could the one-two punch of mold exposure and an ACL tear provoke a catastrophic system failure like RSD?
CHAPTER 2
LISTENING FOR CLUES
WHAT IF PHYSICAL TRAUMAS BUILD UP?
I’m always trying to see a pattern in the forest . . .
______________
Stephen Jay Gould
On a long country road in Delaware, the final rays of sunlight filtered through a forest of white cedar and black gum trees, as Emily Maxwell and her family drove to dinner. Her brother, Barry Austin, was at the wheel of his SUV, with his wife, Susan, beside him. The kids had piled into the back, leaving the middle seats to Emily and her fiancé, Todd.
Emily carefully smoothed the sleeve of her new dress and smiled at him. Todd was reaching over to take her hand when Cody, the family’s huge black lab, decided to do a 360-degree turn on the seat between them, batting dog hair all around him with his wagging tail. Laughing, Emily moved forward to make room for Cody as he snuggled in again. She’d left her seat belt off since the restaurant was just around the corner.
Suddenly, things were suspended, surreal. Sounds and explanations had moved beyond her reach. She was floating, yet not floating, suspended in midair . . . Out the front window, bright patches of green flashed by, tumbling over and over . . .
It didn’t make sense. Her only thought came slowly: What’s going on?
Just before she blacked out, she heard a loud thud. Then everything went silent—not because it was quiet, but because she was so far away she couldn’t hear. Yet things were moving all around her, very nearby. Something urgent had happened—a crisis—but she couldn’t respond. From somewhere in the distance, she thought she heard Todd’s voice calling, faintly. “Emily! Emily! Are you all right?”
And then, as if the volume had suddenly been turned up, the noise began—layers upon layers of sirens. The outcry of steel doors, crushed together, creaking loudly as a crew of emergency medical technicians forced them open.
Emily had no thought of opening her eyes. It was beyond her. But she listened closely to the frantic conversations, distorted by the static of walkie-talkies.
Bright lights glared into the SUV, which now lay crumpled with its right side against the ground, as Emily drifted back into darkness, only to be jolted back by the thunderous whirr of helicopters overhead. An airlift. Someone had to go.
More EMTs rushed in, moving things around. Lots of bustle. A vague sense of relief wafted over her. People were being helped. Things were being taken care of. That was good . . . But no one had come for her.
Emily knew she was hurt, but she didn’t feel anything. It was hard to form a thought. She was there, but hidden—in the car and her own mind. The passenger seat ahead of her had broken loose when her brother had inexplicably passed out and crashed into a tree. As the car rolled, Susan had stayed strapped tightly to her seat, but Emily had been thrown up to the ceiling, then down to the floor. She had slid so far beneath the loose passenger’s seat that she was nearly impossible to see.
After everyone else had been rescued, a medical technician made a final sweep. Catching a glimpse of a strand of blond hair, he crawled back in to check. The EMTs were alarmed when they saw her there, knowing that if she hadn’t budged, something may be very wrong. Working together, they lifted the passenger seat away and pulled her out.
Two EMTs quickly moved Emily to a stretcher, then one of them cut the sleeves of her new dress to insert an IV into her arm. The other kept slapping her face to keep her from losing consciousness. They picked up the stretcher and slid it into the ambulance, then slammed the doors shut and patted them hard to signal the driver. To the sound of raging sirens, the ambulance sped off.
An EMT leaned over her to check her IV. Emily passed out again.
EMERGENCY SURGERY
In the emergency room, medical personnel swarmed around her, checking for injuries. Doctors found her pelvis had been fractured in four places, with fragments of bone scattered around inside. The femur in her left leg had been badly crushed. At first, they were concerned that her femoral artery had been severed. Fortunately, it hadn’t, but x-rays revealed a deep vertical split down the middle of her femur.
When Emily regained consciousness a few hours later, a surgeon at her bedside explained that she had been very seriously injured in a car crash and they were going to have to operate right away. Emily heard him speaking but didn’t interact. Nothing seemed real. She had lapsed into shock.
After the doctor left, she tried to look down at her leg but had trouble sitting up, so she couldn’t really see what was going on. Before she passed out again, her last thought was, At least I can wiggle my toes!
The surgery took doctors much longer than expected. Emily woke up in agony. She had never felt such pain in her life. To support the split femur, doctors had inserted a rod down the middle of her leg, then wrapped coils around it and stuck pins through the rod at the bottom, attaching the head to her already painfully shattered pelvis.
For weeks, Emily stayed in intensive care on heavy doses of morphine and other narcotics. Even then, the pain was nearly unbearable. Emily’s grief over her father’s death, just weeks before the accident, had to be put on hold while she marshaled every ounce of inner strength to get through the day.
Physical therapists came to her room every day to get her out of bed and help her walk precariously down the hall. Emily couldn’t believe how excruciating a broken leg could be. Laying in bed was painful, but putting any weight on her leg sent sharp pain up through her hip, where metal pins were holding her pelvis together. Balancing was especially difficult because she could no longer move her toes.
Emily was still in terrible pain when the orthopedic surgeons discharged her from the hospital 4 months later. They were pleased by how well she’d recovered. X-rays showed that the bones in her leg and pelvis had healed. Her body had integrated the metal rod for support, and she was finally able to walk with a cane.
When Emily complained that she was still in pain all the time, the surgeons simply extended her prescription for narcotics. They said there was nothing else they could do. From an orthopedic point of view, she was fine.
Hoping there were other solutions, Emily turned to alternative medicine—acupuncture, homeopathic remedies, massage—but no matter what she tried, the pain persisted. She consulted other health care providers, too, but everyone told her, “You need to be patient. It takes a long time to fully recover from an injury like this.”
When more months passed and the pain had not diminished, she sought out two surgeons who’d had success treating chronic pain. They did an MRI of her femur and found scarring around the sciatic nerve. This scarring alone would have been enough to cause her excruciating pain.
After struggling to be patient all these months, Emily was glad to finally have a diagnosis doctors could act on. This was the first glimmer of hope she’d had in a long time. Everything had come to a stop during those long, miserable months. Todd, who had only sustained minor injuries in the accident, had stood beside her every step of the way, but they’d had to put their wedding on hold. If the doctors could address this scarring, maybe she would finally recover. Emily could give up these deadening narcotics. She and Todd could start their life together.
But the expressions on the doctors’ faces were grim. “If you’d come to us right after surgery,” they sighed, “we probably could’ve helped you. It’s too late for us to do anything now. Why did you wait so long?”
DESCENT INTO PAIN AND DEPRESSION
All of her life, Emily had been a cheerful, buoyant person, quick to see the positive side of things. She had so many good memories to look back on. After her first marriage of 30 years ended, she had found the strength to move on. Before too long, at 62 years old, she’d met Todd and fallen happily in love again.
Now she was taking enough narcotics to put a junkie into a coma. And the drugs barely blunted the pain. She had to take antidepressants to keep from crying all the time. Every time she sought help, another set of doctors told her, “There’s nothing we can do.”
After almost a year of unremitting pain, Emily felt her optimism failing. With no relief to look forward to, it was harder to encourage herself. Before long, she found herself deeply depressed.
Not wanting to stay in that dark place, she worked up the courage to look for help again. This time, she found Gwenn Herman. After being in a traumatic motor vehicle accident herself, Herman had founded a support group for people experiencing chronic pain.
With millions of people suffering from chronic pain without relief, there was no shortage of participants. Her group had quickly grown into a vibrant, nonprofit community called the Pain Connection, offering group therapy, training programs, live audio broadcasts, 24-hour hotlines, and other resources. “Our work aims to improve the quality of life of those suffering from chronic pain, decrease their sense of isolation and alienation, increase their control of their condition and treatment,” Herman explained. “There are many barriers to treatment, including lack of effective interventions, untrained health care providers, financial limitations, and stigma. People with pain fall between the cracks of our flawed health care system.”1
As Emily was discovering, the traditional medical approaches to chronic pain were limited to prescribing pain pills and antidepressants. Through Herman, she learned about the Kaplan Center. We donate office space for some of her group meetings.
MEETING EMILY
When Emily came in, she was struggling to walk with a cane. The tension in her face and shoulders offered evidence that every step was more painful than she liked to admit. In some ways, the orthopedic surgeons had been right: The bone had healed around the rod they’d inserted, the incision to insert the rod had healed, and the shattered bones in her pelvis had healed. But Emily herself was far from healed.
Looking at her body as a whole, I found it obvious that a massive structural change had occurred and Emily’s wounded body had been struggling heroically—and failing—to adapt. Her leg had healed, but every part of her body had shifted to accommodate the changes in her leg and pelvis. Now her skeletal system was completely out of kilter. None of it was functioning well. The compensatory pattern was having painful ramifications.
Powerful medications were beating back some of the pain, but they were taking a heavy toll on Emily’s ability to think straight, keep her emotions in check, and run her life. The damaged nerves in her leg weren’t sending reliable signals to her brain.
As I reviewed her medical records, I could see that she must be living in excruciating pain. I asked her, “On a daily basis, how much pain are you in—on a scale of 1 to 10?”
Not wanting to seem melodramatic, Emily said, “Maybe a 6 or 7.”
Looking at her x-rays, I doubted that. I was reminded again that true listening means hearing what a person isn’t saying. “Oh come on!” I said, chuckling to put her at ease. “Tell me how much pain you’re really in.”
Emily looked down at her hands. No one had really wanted to hear the answer to that question in so long that it nearly brought tears to her eyes. “You mean, like sometimes I want to kill myself?”
“Yeah,” I nodded. “Like that.”
It was appalling to see how badly our medical system had let her down. Emily obviously had a complex structural problem. Yet the orthopedic surgeons had examined her and said, “Your leg’s okay.” Maybe so, but what about the hip attached to the leg? What about her lower back? Wasn’t it just common sense to assume that severe damage to the leg would have implications farther up the skeletal system? She was in pain when she walked. That should have been a clue.
Apparently, they didn’t think so. They did their thing and walked away, never looking further than their own area of specialty. Their patient was left with significant back and leg pain that she’d never had before the accident. True, her stitches had healed, but she couldn’t walk. Rather than investigating further, they increased her meds, burying her symptoms with narcotics, and when she felt discouraged about that, they gave her antidepressants.
It’s sad to say that, in doing so, they were providing the current standard of care in the medical profession. There was nothing unusual about their treatment. These orthopedists did exactly what they had been taught to do. No medical review would fault them. No insurance company would deny their payments. Yet it was utterly inadequate. Chronic pain is neurodegenerative. Leaving it alone was almost the worst thing they could have done.
It is vital that we stop and think intelligently about what is causing the pain, rather than just making it go away. Masking her awareness of the pain, without finding the cause, would have eventually resulted in permanent disability. We should be striving to fortify the body, not to override it.
When Emily came into my office, she was well on her way to a lifetime of pain and suffering because of the very standard of care her doctors had provided. They had followed the old rules of conventional medicine, not knowing that the old model was broken. From the moment of her accident, Emily needed a far more comprehensive analysis and treatment than mending a leg and gluing a shattered pelvis back together. When she didn’t get it, her body was overwhelmed and things began to spiral.
PAIN MEDS AND NSAIDS
By the time I saw Emily, there were imbalances moving throughout her entire body. She was severely impaired on many levels. Rather than looking for symptoms to squelch, I began to look for patterns of disharmony. Often, with an elegantly complex system like the human body, there is no simple fix. This disharmony can extend throughout all systems of the body and all aspects of an individual’s life, emotionally and physically. It represents a breakdown of the whole. So it is natural that its treatment requires a comprehensive, integrated approach. I wanted to know all of the components—everything that was keeping her sick and in pain.
First, it was imperative that we realign her structural system. All of our organs are connected through the musculoskeletal system. Without structural reintegration, nothing in Emily’s body would be able to function well. Simultaneously, we needed to address the physiological issues. She was also complaining of constipation, gas, and bloating.
