Cami conquers her pain

Pediatric Chronic Pain Clinic gives student tools to manage her persistent pain and resulting anxiety.

Cami Hancock will soon take the stage in Michigan State University’s freshman theater showcase.

What for her peers is simply an opportunity to share their acting talents, for Cami is the chance to regain her footing after a 10-year battle with chronic pain—and with the inner demons that have emerged as a result.

Cami, 18, is especially eager to prove to herself that what she’s learning from her psychologist, Brittany Barber Garcia, PhD, is paying off.

“She’s just given me so much more confidence in managing my health,” Cami said. “I feel like I can really influence my pain, and it’s not my pain controlling me anymore.”

Dr. Barber Garcia is a pediatric psychologist specializing in chronic pain at Spectrum Health Helen DeVos Children’s Hospital’s new Chronic Pain Clinic.

Decade of disruption

As Cami remembers it, she was in third grade when she first missed school because of abdominal pain.

That decade-old pain has stayed with her ever since, a continual source of distress and disruption.

“We never could get a handle on it. It was always there,” said Jodi Hancock, Cami’s mom. “Thousands of times—‘Mom, my stomach hurts,’ ‘Mom, I have a stomachache.’ It would create stress for me as well.”

Things got so bad in her junior year at Okemos High School that Cami, who loves to sing and who began acting at age 6, dropped out of choir, quit voice lessons and gave up cheerleading.

The pain became so intense she sometimes couldn’t eat or sleep.

Cami went to specialist after specialist until someone pinpointed the source—a condition called MALS, median arcuate ligament syndrome, in which a ligament from her diaphragm compresses her celiac artery.

MALS is so rare that Cami, a resident of Lansing, Michigan, traveled to the University of Chicago for surgery to correct it. That operation, in spring 2016, gave her welcome relief from pain.

But the reprieve turned out to be temporary.

“I had a really healthy summer,” Cami said, “but then starting my senior year last year, my pain started increasing.”

This time the ache centered lower in her abdomen and was accompanied by nausea and dizziness. Periods of standing would put her at risk of passing out. Cast in a community theater production, Cami experienced such severe dizziness and nausea by the last performance that she couldn’t go onstage. Devastated, she pulled out of the show.

That fall Cami underwent additional testing and learned she has a second illness—an autonomic nervous system condition called POTS, postural orthostatic tachycardia syndrome. In patients with POTS, the body doesn’t properly control blood pressure and circulation, especially when changing positions, such as when moving from sitting to standing. It’s a chronic illness that can be controlled but has no known cure.

To get a better handle on her symptoms, Cami’s pediatrician referred her to a pediatric gastroenterologist at Helen DeVos Children’s Hospital, Deborah Cloney, MD, and also inquired about the Grand Rapids hospital’s pain management program.

At the time, pediatric pain management services were offered only inpatient—but when the Chronic Pain Clinic opened in 2017, Cami became one of its first outpatients. The clinic formed as a collaboration between Dr. Barber Garcia and Bradd Hemker, MD, a specialist in pediatric palliative medicine. It’s part of a newly formed Pediatric Pain and Palliative Medicine section at the hospital.

Holistic approach

The Chronic Pain Clinic uses a whole-person perspective to care for pediatric patients with a range of pain-inducing illnesses, including gastroenterological disorders like Crohn’s disease and ulcerative colitis, rheumatologic conditions like fibromyalgia, neurological problems, orthopedic issues and inflammatory diseases.

On the palliative medicine side, the focus is on reducing suffering and improving quality of life for kids with various complex illnesses.

The clinic evaluates each patient’s symptoms and functioning from three perspectives—medical, psychological and physical therapy. For Cami, the multidisciplinary team recommended a program of long-term therapy with Dr. Barber Garcia to help her manage and cope with her symptoms.

“When I met Cami, she had missed about 40 days of her senior year of high school,” Dr. Barber Garcia said.

“The pain was really negatively impacting her life, and that’s where pain psychology comes in. Because psychological treatment for chronic pain is all about helping you cope with and manage the symptoms differently in order to help you get back to everyday life.”

At this point, Cami questioned whether her pain could ever improve. She had seen so many doctors, with no resolution. How could a psychologist possibly help?

“I was really skeptical,” she said. “I guess I didn’t realize how important your thinking is for your health.”

But she figured she didn’t have much to lose.

As it turns out, the program was well worth the effort. Cami is making great strides in combating her symptoms using the knowledge and coping skills she’s learning.

“When I met her, we spent a lot of time talking about how the mind and the body work together,” Dr. Barber Garcia said.

Pain is generally meant to be useful, Dr. Barber Garcia explained. Acute, short-term pain tells us that something is wrong so we can take action to fix it and then return to functioning.

But chronic pain isn’t useful in the same way. Cami’s pain wasn’t helping her; it was only holding her back. So Dr. Barber Garcia began teaching her how to overcome the pain by functioning through it.

“We need to function in order to teach the body that we don’t need that pain signal anymore. And that’s what eventually causes the pain signal to stop.”

People like Cami can learn to function, even with pain, by using distraction techniques. Relaxation skills. Physical activity. Guided imagery. Thought-based skills to change how they think about and respond to pain.

Dr. Barber Garcia tells her patients they’re building a toolbox together, and she wants them to have dozens of tools to choose from. “If pain is negatively impacting your experience in a moment, I want you to have lots and lots of different things that you can try,” she said.

The idea is that if patients actively, intentionally focus their attention on something other than their pain, they won’t notice the pain as much and the experience of pain will gradually decrease.

For Cami, distractions like journaling, doing schoolwork, playing with her dog and researching Broadway shows have been important tools.

She tells about an exchange she had with Dr. Barber Garcia after a trip to New York City last summer. “I came back and I was like, ‘I felt so healthy.’ It was the weirdest thing.”

Dr. Barber Garcia answered, “I can tell you exactly why you felt healthy. It’s because you were so distracted.”

“And so we’ve tried to find things like that—that keep my mind stimulated like it would be in New York and not to let myself like just lay around for hours, because that’s when you can start focusing on your pain,” Cami said.

These efforts are working.

“When I do feel pain, I don’t focus on it,” she said. “But also, in general, I have not been nearly as sick in a long time.”

For the first time in years, she’s not on medication for stomach pain.

Mental might

Another focus of Cami’s therapy is managing the anxiety that has grown out of her pain—like the fear of fainting or of vomiting.

“Instead of like running from my anxieties, we’re trying to slowly work through them,” she said. “Dr. Garcia taught me that when I’m saying a sentence that starts with ‘What if…,’ then that is anxiety talk.”

The fact that Cami is learning to turn her back on those thoughts is a huge change, her mom said. She attributes a lot of her daughter’s progress to the acceptance she’s received from the Chronic Pain Clinic team.

“When we met the team here, they said, ‘OK, we acknowledge that, yes, you’re in pain. We acknowledge that your symptoms are real. We acknowledge that what you’re experiencing is a normal reaction to it,’” Jodi said. “I think Cami’s able to relax and open up because she feels really safe and that she’s not being judged.”

Dr. Barber Garcia gives Cami all the credit for her success. She’s the one who made the decision to do the hard work, even when she was skeptical that this type of treatment could help her. She’s the one who took the risk. And this speaks volumes about her character, her psychologist said.

She tells her patients it’s critical to “take hold of these skills, make them your own, make them work for you,” Dr. Barber Garcia said. “That’s the thing that’s going to make a difference, and that’s the thing that I think Cami has maybe even surprised herself in doing.

“And it’s been a really beautiful progress to watch.”

Cami may choose not to pursue a career in acting—having POTS makes it challenging to stand on stage for great lengths of time. But she’s adjusting her dreams, just as she adjusted her thoughts about pain. As an education and arts-and-humanities double major, she’s keeping the door open to teaching theater or working in the business another way.

What she’s most excited about is living a normal life, participating in the things she loves.

“I know I’m going to have a chronic illness,” Cami said, “but I just want to live my life the best way I can, without interference from pain.”

Learn more about the pediatric palliative care program at Spectrum Health Helen DeVos Children’s Hospital or contact the Chronic Pain Clinic at 616.391.8842.

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Comments (1)

  • Pain management is so vital in a person’s life. “Changing Channels” and forcing our brains to think of something entirely different when pain presents itself is so important to one’s physical and mental health!

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