Self-Advocacy for Back Pain Relief

It’s 2005. Frank, a prototypical patient of mine, is 45, and his back hurts. He doesn’t know it, not in so many words, but he’s part of the leading edge of a population of middle-aged, non-college-educated white men who are dropping like flies. In 2015, Princeton economists Anne Case and Angus Deaton will find that men like Frank are the only group of people in the United States for whom mortality is rising due to worsened cardiovascular health, cancer, and what they call “deaths of despair” — deaths due to substance abuse and suicide. Little by little, Frank’s back pain starts to take up more and more space in his life.

He sees a primary-care doctor at a large HMO that’s covered by the insurance policy he gets as a municipal maintenance worker. The job is solid, has good benefits, and he’s been there for the last 15 years. He has the usual laundry list of complaints — his hips are stiff when he gets up, and the arthritis in his knuckles is starting to be a problem — but it’s his back that finally brings him to the doctor’s office. The doctor says, in a hurry, she doesn’t prescribe opiates for back pain. Frank is embarrassed, wondering what she thinks of him. He leaves with a prescription for nonsteroidal anti-inflammatory drugs, rest, and conservative therapy. “Come back in six months,” his doctor says. He doesn’t come back.

It’s 2010. According to researchers, 32% of chronic pain sufferers have considered suicide. Frank’s back pain has a starring role in his day to day life. He tries different things to manage it. He’s on desk duty now, but he isn’t sure that the sitting is much better for his back than the physical work was. His wife bears the brunt of his irritability and anger at home. Not her Frank, she thinks. At night, he needs to get up several times to use the bathroom. Each time, he lays there, dreading moving his legs, wishing he could get some peace.

It’s 2012. In the last two years, Frank’s back has taken over his life. He’s off work now. He estimates that he’s spent around $3,000 on different therapies. The few x-rays he has gotten have shown nothing wrong with his back, the doctor says. First, there was a chiropractor at $50 a pop (no pun intended), but he did feel right for a few hours after the treatment. Next, the PCP ordered physical therapy, which cost him a $30 copay. It did little but frustrate him. He bought a series of expensive mattresses, convinced by a salesman that the latest model would be the secret to pain-free nights. He is barely sleeping. His doctor diagnoses him with depression and adds an antidepressant to his daily cocktail of anti-inflammatories.

Frank doesn’t seem to know how to tell the doctor how bad it’s gotten; he isn’t sure what language to use. He’s embarrassed at the places the pain seems to radiate — his buttocks, his groin. He always says something like five on the pain scale, because 10 means you’re dying. Finally, he explains to her that something is changing with his walking. The terrible, jarring pain in his legs and back seems to be a little better if he leans forward. Sometimes, quite far forward. He moves through the house like Tarzan, pushing down on one surface to get him to the next. When he goes to the grocery store, his wife puts the cart right next to the car so he can curl himself over the handle and push. Alarmed, the doctor refers him to a pain management clinic.

It’s 2013 when I meet Frank. He is 53, but he looks much older. He has been diagnosed with a slow-growing prostate cancer. Despite his blunt affect during our first meeting, after describing his symptoms, he begins to weep. It is not the first time a man has broken down in my office when trying to explain how back pain has stolen his life from him. I start with ordering an MRI, an $800 procedure that, done five years ago, might have saved Frank a great deal of money and suffering.

I am unsurprised to review his results and diagnose him with lumbar spinal stenosis.

“Stenosis” comes from the Greek word for “choking” — it refers to age-related degeneration of the vertebrae and narrowing of the bony canal that holds the spinal cord. We start treatment with a series of epidural steroid injections. A week after the first one, he comes to my office with his wife, beaming. He is walking again.

Periodic epidurals keep him going for a year or so, but their efficacy seems to be diminishing with time, so I discuss surgical options. Frank is afraid of having his spine “opened up” during surgery, but I explain that endoscopic decompression is done entirely laparoscopically, with tiny surgical tools that leave little in the way of scars. The surgery is meant to gently widen the narrowed opening in the spinal canal, giving the spinal cord and nerves room to function normally. Frank undergoes the surgery without complications. His recovery takes about six weeks, and he completes a course of physical therapy after he is fully healed.

It’s 2015. I haven’t seen Frank for about a year. His surgery results were typical; he regained much of the function he lost in years prior and reported that his pain was 70% less than it had been, but there were still good days and bad days. Significantly, he had stopped taking antidepressants and reported resuming activities that were meaningful for him — playing with his new granddaughter, gardening, and even making love.

While Frank ultimately had a good outcome after years of pain, many people like Frank never make into a specialist treatment clinic like mine — disproportionately, those who lack insurance coverage. While recent recommendations from the American College of Physicians have stressed the need for conservative, nonpharmacologic therapies such as acupuncture, chiropractic, and massage for low back pain, patients should also self-advocate to receive higher levels of care when they don’t receive adequate relief from more conservative therapies. True, there is a rationale for conservative therapy before interventional therapy is instituted. As a physician, I have seen the use of such dogma as an excuse from insurance carriers to deny care. If you find yourself standing on railroad tracks and you see a train to your right, there is about a 50% probability that the train is moving away from you. But how many of us would wait and see if the train gets closer or farther before we take action? Patients with disabling low back pain are being told exactly that: wait for while.

Frank faced several barriers in his journey toward relief. Some of them were due to his internal concerns and attitudes about pain relief. He was worried about being perceived as drug seeking, and he also felt uncomfortable in discussing sensitive symptoms with his female doctor. Having rarely gone to the doctor throughout his life, he tended to view them as a place for one-stop solutions, rather than building a relationship and treatment protocol together over time. Other hurdles were due to the difficulty he had in getting timely appointments with his primary-care physician and the complex system of referrals necessary to get him to the appropriate specialist clinic. We have innocently created this system, with coaching from the insurance industry. It has coerced the whole system into creating barriers to provide medical care. What could Frank have done differently?

For patients who have difficulty self-advocating, one of my first recommendations is to seek help from others you trust. Joining support groups, in person and online, for people with chronic pain can help you learn more about the different treatment options available. Beyond educating yourself, it can be useful to bring a trusted family member or friend to your appointments with your doctor if you feel he or she doesn’t understand your symptoms. The support of someone in the room who knows you and how pain is impacting your functioning can help facilitate communication with your doctor and open the door to better treatments.

Want to learn more about managing back pain? Read “Recovering From a Herniated Disk,” and “6 Questions for a Spine Surgeon.”

Abraham Rivera, MD, is the medical director for Physician Partners of America and oversees 26 physicians in all facets of pain management. He is also the chief medical officer for the Florida Pain Relief Group, in the Tampa Bay area. He previously served as the director of pain management at the Florida Medical Clinic, a 200-physician multi-specialty group. Dr. Rivera specializes in spinal cord simulation, intrathecal therapy, and other advanced pain-management interventions.

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