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Very few studies have examined the long-term effects of extended opioid use. When I talked to doctors, some, like NYU's Dubois, spoke positively about them. Others, like Dr. W. Michael Hooten at the Mayo Clinic's Pain Rehabilitation Center, find opioids wholly unnecessary. "It's very clear to me that long-term opioid use for chronic pain doesn't provide long-lasting benefits," he says. Shaffer's doctor agrees. "Opioids are the enemy," Mohajer says. "They don't do well against nerve pain. There are a lot of side effects, like constipation and decreased hormones. But sometimes they're still the only option that patients have until they can get surgery — or if surgery doesn't work."
"You have to understand. I don't want to be on drugs," Shaffer says. Percocet makes her sleepy, occasionally causing her to nap for hours in the middle of the day. CRPS gets worse with time, and the pain was shooting as far as her shoulder. When her son asked her to play on his Nintendo Wii with him, she didn't know how to explain why she couldn't swing the remote. She didn't want more drugs; she wanted a solution.
The Last Resort
Chronic pain has no solution, just a collection of imperfect options. The best one, Mohajer suggested, was a spinal-cord stimulator: a little device implanted beneath the skin of the lower back, about the size of a keyless car-door opener. When it's on, wires that extend from the device up a patient's spinal column send an electronic pulse to override the person's pain, replacing it with a tingling sensation. The stimulator has been known to work for neuropathic pain in the lower back, arms and legs. Although it requires only an outpatient surgical procedure, thick scar tissue builds up around it, making it very difficult to remove. People with spinal-cord stimulators can't have MRIs or ultrasounds or be revived with defibrillators. Because of the location of Shaffer's pain, the wires would have to be implanted near her neck, where the spinal-column opening is very small. "She needs to realize that it's possible that she'll go in with hand pain and come out paralyzed," Mohajer says. Shaffer understood this. But the possibility of getting her life back was simply too tempting to let go.
On Feb. 4, Shaffer underwent what she called the "test run," a preliminary surgery in which wires were implanted in her neck and attached to an external stimulator that she wore affixed to her waist. The exposed wires made her look like some sort of futuristic machine; she joked that she was slowly turning into the Terminator. She would try the stimulator out for 10 days. If it worked — if her pain decreased — Mohajer would schedule the permanent surgery.
It did work: she barely felt her pain. But the results weren't perfect. Her arm constantly felt as if it had fallen asleep, and sometimes, when she turned the current up too high, the electronic pulse caused the muscles in her arms and back to spasm. "I lost most of the feeling in my right hand," Shaffer says, "but I will take this over the feeling of pain any day." She cut back to two Percocet pills a day.
At the time this article was written, Shaffer's temporary stimulator was declared a success and was removed. But the surgery to implant the permanent one is risky — within the past few years, three patients operated on by three surgeons in the Las Vegas area had developed some form of paralysis — and Mohajer has struggled to find a doctor willing to operate on Shaffer. She is back at home, on drugs and in pain, exactly as she had been. "It's been depressing," she says. "I found out how good my life could be, and now in the morning I wake up and think, Crap, I hurt all over again."
To live with pain is to live with a series of choices. It's been three years and four months since Shaffer's original injury. She can continue to take drugs, or she can have a machine implanted in her body that could leave her paralyzed (and will definitely decrease her sense of touch). She can take an extra pill one day, knowing that she will run out at the end of the month. My mom faces the same decisions. She'd rather hurt a little every day than worry about running out of medication. "Everyone has to do their pain time sooner or later," she tells me. "If you want to do something, you just have to figure out how much it's worth."
My mom is divorced now, living alone in a Chicago suburb. When several feet of snow fell on the city earlier this month, she went outside and shoveled a path to her front door. "What do you want me do?" she asks when I point out that it would hurt her back. "Eventually, I have to leave the house." True, she would probably spend the next day in bed, but she had made her choice. "If the price for living my life is that sometimes I'm in tears, well, then that's what I'll do," she says.
I ask my mom if she has any advice for someone like Shaffer, a young mother with decades of her life stretching before her but also, most likely, decades of pain. She is quiet for a moment, and then she says, "She has to get used to crying in public. As soon as she gets over that, everything else will be O.K."