For Young Patients in Pain, a New Center at Mass General Offers Long-Sought Relief

Sitting in class one day, seventh-grader Alison Ivkovic was struck by an electric shock-like pain in her neck and jaw. As the sensation spread upward, Alison’s eyes started twitching, her tongue began to burn, and the otherwise healthy 13-year-old was immobilized by the severity of her symptoms. The next 24 hours saw her yanked out of school, hospitalized and tested for everything from diabetes to Lyme disease, but throughout this search for the cause of her facial paralysis, Alison could only focus on the pain.

“I felt that I could deal with any diagnosis and whatever came along with it, if only the pain would go away,” says Alison, now 17 years old and a high school junior.

Desperate to find relief for their daughter, Alison’s parents sought appointments with top neurosurgeons in Boston, New York and Seattle. In a three-year span, the teen spent more than 150 days in hospitals — so much time that she had to transfer to a new school— and along the way underwent four spinal taps and nearly 50 nerve blocks — injections of local anesthetic directly onto the nerve tissue to temporarily reduce pain. Eventually, the Ivkovics received a diagnosis of occipital neuralgia and along with it a more long-term solution for Alison’s pain in the form of an operation called nerve decompression, the surgical removal of bony tissue constricting a nerve. For eight months, Alison lived relatively pain-free, but an operation to remove her wisdom teeth triggered the paralyzing pain once again and sent her and her caregivers back to the drawing board.

Around this time, the Ivkovics heard about the Multidisciplinary Pediatric Chronic Pain Center at MassGeneral Hospital for Children (MGHfC), a clinic dedicated to addressing the unique needs of kids whose lives have been turned upside down by chronic pain. Directed by Padma Gulur, MD, the Pediatric Chronic Pain Center brings together an interdisciplinary team of experts who specialize in pediatric pain management, working to help children in pain achieve maximum function and to give them a fighting chance at normal life.

“Chronic pain — pain that persists for six months or longer — is a significant problem in our country’s pediatric population,” says Dr. Gulur. “We estimate that 15 to 20 percent of children experience at least one episode of chronic pain.” Millions of Americans suffer from chronic pain, which occurs when signals of pain remain active in the nervous system for prolonged periods of time, sometimes long after the precipitating injury or infection is healed or cured and, in many cases, in the absence of any physical evidence of disorder at all. In children, common chronic pain complaints include headache, chest and back pain, abdominal pain, neuropathic pain — such as peripheral nerve injuries or post-amputation pain — and pain associated with cancer or sickle cell anemia.

“The medical community excels at treating patients with acute pain,” says Dr. Gulur, “but we fall short when it comes to chronic pain, which requires a nontraditional approach to treatment. For most patients, relief, if it comes at all, follows months or years in and out of doctors’ offices and hospitals, and for kids, that takes a huge toll socially, emotionally and developmentally.”

Since the doors of the MGHfC Pediatric Chronic Pain Center opened in June 2009, Dr. Gulur and her colleagues have made great strides in developing a treatment protocol that better addresses the complex needs of children suffering from debilitating chronic pain. To start, every child under the center’s care meets with a pediatric pain specialist, a psychologist and a physical therapist for one hour each. Following the lengthy intake evaluation, the three clinicians gather to formulate a comprehensive plan for the child’s care, which is presented to the patient and family, who then work with caregivers to further individualize the treatment approach. Putting the plan into action, Dr. Gulur meets regularly with the patient and family to monitor progress and intervene immediately when problems arise.

Dr. Gulur’s approach is time-intensive and demanding for clinicians, patients and families alike, but many of her young patients struggling with the worst cases of intractable pain respond positively.

“Last year’s setback left me incredibly frustrated — it was so hard to hit a dead end after eight months of thinking I had moved past the pain,” recalls Alison Ivkovic. “To make matters worse, my friends couldn’t understand. Kids understand cancer or diabetes — not pain. But when I met Dr. Gulur and her team, I was amazed at how well they understood what I was going through. Listening to her talk, I realized that, for the first time, someone was giving me options — options to cope and options to move through the pain.”

According to Dr. Gulur, frustration like Alison’s is common to patients when they come in to the center — along with anxiety, depression, irritability and fear. Many children suffering from chronic pain miss school and withdraw from friends, while their parents lose wages or struggle to keep up with the job demands while taking time off to care for them. Because many chronic conditions leave no scars or other visible signs of illness, a child’s physical pain is often compounded when he or she feels suspected of malingering or exaggerating symptoms. Very often, Dr. Gulur meets patients who have ceased to communicate openly with adults around them, both about their physical pain and the fear and hopelessness that arise as a result of months of unsuccessful invasive procedures and treatment regimens.

In light of these challenges, Dr. Gulur’s team at MGHfC sets to work at the outset to address the psychological toll chronic pain takes on patients. According to the group, the emphasis on trust between patient, family and clinician is critical to recovery from chronic pain conditions, in particular. “Instinctively, when we feel pain, we want to stop moving and to defend and protect the part that hurts,” says Dr. Gulur. “But to overcome chronic pain, you have to override that defensive instinct. It’s essential that we take the time to build trust because we’re asking these kids to work through terrible pain in order to heal.”

Setting aside time to build such crucial relationships, conduct the necessarily lengthy intake appointments and closely monitor patients in crisis puts a great strain on the limited resources available to Dr. Gulur and her team. Currently, insurance billing does not cover the expense of patient appointments; instead, the Pediatric Chronic Pain Center runs on temporary solutions — partial subsidies from various departments throughout Mass General and volunteer shifts covered by key clinicians. Demand far outpaces clinic availability, however, and Dr. Gulur’s center has a months-long waitlist of patients in need.

Meanwhile, the pain specialist and her colleagues are focusing on making a difference in the lives of the patients they are able to admit to the center now. In addition to helping each patient manage chronic pain conditions, the center’s objectives are to reduce school absences, improve family coping and reduce hospital admissions for pain. Because relatively few studies have focused on pediatric chronic pain, conducting research in the field in collaboration with physicians at Children’s Hospital in Boston is also a top priority for the center’s staff.

For Alison, clinicians at the MGHfC Pediatric Chronic Pain Center have already made a palpable difference. “I’m back in school and on track to graduate on time with my class,” she says. “Right now, I’m focused on college. My ultimate goal is law.”