I have never been one to visit a doctor regularly. Even though I had accumulated my share of problems by age 50— arthritic knees, poor hearing — I considered myself to be among the mostly well. But 19 months ago I developed a perplexing problem that forced me to become not only a regular patient but also one of the millions of Americans with chronic pain who struggle to find relief, in part through treatment with opioids.
The trouble began with a terrible and persistent pain in my tongue. It alternately throbbed and burned, and it often hurt to eat or speak. The flesh looked red and irritated, and no amount of Orajel or Sensodyne relieved it. My doctor suggested I see my dentist; my dentist referred me to an oral surgeon. The surgeon thought the problem was caused by my being “tongue-tied,” a typically harmless condition in which the little piece of tissue under the tongue, called the frenulum, is too short. It seems I have always had this condition but had never noticed, because it hadn’t affected my ability to eat or speak. Now things had changed.
The doctor recommended a frenectomy, a procedure to remove the frenulum and relieve tension on the tongue.
“Just a snip,” he promised.
It sounded trivial, and I was eager to be done with it. Although I make a living writing about health care, I didn’t even bother to do a Web search on the procedure. It never occurred to me that “a snip” might entail some risks. I trusted the oral surgeon.
And so on March 11, 2013, I went in for the frenectomy. I sat back in the dental chair and, as I have always done, closed my eyes lest I catch sight of what I imagined must be an exceedingly long Novocain needle.
My calming thoughts ended abruptly with the first shot, dead center in the floor of my mouth. I nearly fainted with pain. By the second shot, I was in tears, grasping the surgical aide’s hand in distress.
The procedure began, and although my mouth was numb, the slicing sounds of the cut made me anxious. It felt as if the oral surgeon was, in fact, slicing my entire tongue away. When I thought the ordeal was surely over, it proved to be only halfway there, as the surgeon still had to sew up the wound.
My surgeon prescribed routine follow-up care: salt water rinses and an antibiotic. And Percocet, a fairly common narcotic painkiller, for when the numbness wore off.
I had expected to be back to normal the next morning. But that evening, when the Novocain wore off, the intense pain returned. I took the Percocet. When that didn’t help, I added aspirin and then dutifully swished with warm salt water, all to no avail. I called the oral surgeon to explain that my mouth was killing me. He prescribed Norco, a slightly stronger medication than Percocet. Norco and I were a bad match. It left me itching from head to toe. The next pain med I was prescribed caused me to vomit.
Over the next few days, while I was out of town on business, the pain worsened. It was an alternating combination of sensations — that I had scalded my tongue, bitten down on it hard or pierced it with something sharp. No matter what I did, it hurt. In the ensuing days, I tried a variety of medications, none of which helped.
The following week, still in relentless pain, I went back to the oral surgeon; his colleague suspected that an undissolved stitch was triggering my pain and removed it. That didn’t help, either.
Though I did not know it then, my misery had just begun. The pain was eventually characterized as neuropathy: pain caused by nerve damage. Although the course of neuropathic pain varies by source and mechanism, and treatments range from highly sophisticated medical interventions to meditation, the outcome is often the same: The chronic pain itself becomes an affliction to be treated, in addition to whatever injury or condition caused it in the first place.
Severe chronic pain can make life itself a test of endurance and will. And with oral pain, the agony is nearly constant: You cannot simply put your tongue away or not use it for a while.
People who turn to physicians to heal chronic pain often discover that some clinicians view us with skepticism or disbelief. At times we are reduced to begging for help. Some of us are dismissed as drug-seeking addicts.
For several weeks after my oral surgery, I was in nearly daily contact with my surgeon, who said again and again that he had not heard of a patient experiencing such pain as a consequence of a lingual frenectomy. And yet when I began to search the Internet for relevant terms, I found repeated references to the kinds of damage that can occur. Eventually, I joined a group on Facebook, where I met a few hundred other people who were suffering from mouth pain, triggered for the most part by routine oral surgeries.
I had now entered the maze of pain management, where getting effective medication that I could tolerate, and an adequate supply, became a constant struggle.
More than a month after my surgery, the pain had become even worse. Some days I could hardly get out of bed; I was incapacitated by pain and its companion, despair. The oral surgeon called on his colleagues and eventually I wound up at a university dental school where I saw a surgeon who specializes in oral and maxillofacial surgery.
He injected two points in my jaw with Novocain. The pain subsided almost immediately. The surgeon told me he suspected that an errant stitch had wrapped around a nerve in my tongue. Although exploratory surgery was possible, he said, it was unwise, because the nerves were so small and the process was likely to cause more damage. Left on their own, he continued, the nerves might heal in 12 or 18 months. He suggested I find a neurologist to explore appropriate treatments.
Eventually I found one who could see me, but I was dismayed when she handed me a few samples of antidepressants and anti-seizure drugs, both indicated for the treatment of neuropathic pain but both likely to cause unpleasant side effects. It was up to me to select which I’d prefer — neither seemed a good solution. I saw another neurologist, who suggested a trial of Cymbalta, an antidepressant that might lift my mood and relieve my pain. It could take six weeks to kick in.
And so, week after week, I continued to see my own oral surgeon, who would dutifully examine my tongue and lament my ongoing need for painkillers. I had told him about my lifelong problems with depression and my ongoing treatment for it, and he was concerned that I might be predisposed to addiction. I assured him that I certainly didn’t feel euphoric, as some people who take opioids apparently do. For me it simply took the edge off the pain long enough to get through the day.
My oral surgeon and other health-care providers have reason to be concerned about the safety of long-term use of opioid analgesics such as Percocet and OxyContin. First touted as a godsend for the management of severe and chronic pain when the Food and Drug Administration approved it in 1995, OxyContin has since become a widely abused medication that can lead to physical dependence and addiction.
There is no denying that such drugs have helped millions of Americans manage their pain. But there has been a cost: Figures from the Centers for Disease Control and Prevention indicate that in 2010 some 12 million Americans were using prescription painkillers without a prescription. The CDC reported that in 2008 painkillers played a role in as many as 15,000 overdose deaths — more than heroin and cocaine combined.
Pain patients like me often feel trapped between the clinical need to treat and manage pain and the social imperative to restrict access to such drugs and promote public safety.
Widespread access to opioids for every single ache and pain is clearly not the answer. In a 2011 report, the Institute of Medicine calls pain management a “national challenge” that will require “cultural transformation” in terms of researching pain to understand its scope, particularly its underdiagnosis and undertreatment. Among the IOM’s recommendations are that providers and patients receive more education on the ways biology and psychosocial factors affect the experience of pain. For me, understanding and accepting those factors have not done much to alleviate the day-to-day experience of pain.
The IOM also recommends that providers “tailor care to each person’s experience” and promote self-management of pain, which could include strategies such as keeping a pain journal, monitoring pain triggers and learning coping strategies such as meditation and yoga.
Experts also recommend that primary-care doctors coordinate care and treatment with pain specialists. When my primary-care doctor dismissed my symptoms, I wound up trying to organize and coordinate my care as I journeyed among my oral surgeon, neurologists, pain experts, primary-care physician and psychiatrist. It was more complicated than I could manage. During a two-week period last summer, I wound up in the emergency department four or five times because of adverse reactions to several medications.
One of these visits occurred early in the course of my ordeal, after I had a severe reaction to Cymbalta. I had not been warned that it could make me photosensitive, and, as a fair-skinned person, I was at even greater risk for this. When I erupted in giant welts, I called my dermatologist, perplexed by what was happening. As I sat in her examining room, I fainted, and she called 911.
It was terrifying to leave her office on a gurney. I remember the cool rain that fell and how the EMTs shielded my face from it. I remember their urgency and their calm as they got an IV going and tried to get my vital signs back to normal.
At the hospital, the emergency department doctor stood near my head, patting my arm as he looked at my chart, then saying, “I see that you are in chronic pain.”
“I am,” I said, crying.
“And are you depressed?” he asked. “Because I have never met a pain patient who was not.”
I have since explored alternative therapies: herbal remedies, guided meditation, journaling, exercise. These lift my spirits but do not reduce the near-constant presence of pain.
There is still a chance that my pain will vanish — for instance, if the nerves do heal in the next few months. If they don’t, then I have a lifetime ahead of me to adjust to this situation.
I do my best not to let pain run my life. Some days are better than others. I try to keep a sense of humor. Some days, though, are hard to endure, and I chide myself to be grateful that I am still standing.
Had I spent a moment or two researching the risks of the frenectomy, would I have avoided this experience? Perhaps. But now I have few choices but to live through it.
This story is excerpted from the Narrative Matters section of the journal Health Affairs; it can be read in full at www.healthaffairs.org. Lynch Schuster is a senior writer at the Altarum Institute Center for Elder Care and Advanced Illness in Washington. She is a co-author of “Handbook for Mortals: Guidance for People Facing Serious Illness.”