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stories of hope

Julie Greichunos

Bringing Back the Music

I only wish I would have found Dr. Thompson sooner. He’s a man of knowledge and talent and a man of real heart.

Julie Greichunos, an exuberant musical pastor at a Kalamazoo, Michigan, church, was spending countless hours playing piano, leading worship teams, and planning songs and services. Then one day she felt a strange tingling on the right side of her face. It then crept down her right arm and into her hand. 

The tingling turned into intense pain and numbness to the point that holding a microphone became a challenge. 

“I would be leading a service and would have to let my right arm hang down,” she says. “It felt like it was going to fall off. It was the craziest thing.” 

Although Julie was physically fit—a runner who also lifted weights—she soon was unable to open a jar, hold a coffee mug or push a vacuum cleaner. Even taking a shower was a hurdle. 

“I was exhausted after washing my hair,” Julie says. It also meant she couldn’t play the piano. The music had stopped. 

A Long Search To Find Relief 

This was the beginning of a 10-year search for the cause of her pain. She went from doctor to doctor and even spent a week at the Mayo Clinic in 2011. The neurologist there was baffled. 

“He knew what it wasn’t, but had no idea what it was,” she says. “When you go to Mayo and they can’t figure it out, you think, ‘Am I crazy?’” 

She was so desperate for an answer that she tried non-conventional treatments and even had the mercury fillings removed from her teeth when one doctor suggested that metal might be causing the problem. 

Finally another physician told her about a patient who had similar symptoms and was successfully treated by surgeon Robert Thompson, MD, at Barnes-Jewish Hospital in St. Louis. That same day, Julie called Dr. Thompson’s office and made an appointment. 

Dr. Thompson did indeed know the source of Julie’s pain: thoracic outlet syndrome (TOS). Neurogenic TOS is a rare and disabling condition caused by compression of the nerve bundle that controls muscles and sensation in the shoulder, elbow, wrist, and hands. Symptoms include pain, numbness, and tingling. 

TOS can be caused by a number of activities including sports, heavy lifting, repetitive motion, motor vehicle collisions, or falls. While some sufferers are successfully treated with physical therapy, for others the condition is debilitating to the point where they are unable to work or carry out normal daily activities. The syndrome is difficult to diagnose because its symptoms can mimic those caused by other neurogenic conditions. 

Expert Treatment Changes Lives 

Very few surgeons are trained to handle TOS cases, so in 2008 Dr. Thompson launched the Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital, the first multidisciplinary center in the country to focus on TOS and related conditions. The next year, the Center, with support from The Foundation for Barnes-Jewish Hospital, hosted the first nationwide professional consensus conference and patient support meeting on TOS. The conference also resulted in a number of research projects and the first multidisciplinary textbook on the subject. 

“One of the frustrations with TOS is that it doesn’t get recognized,” Dr. Thompson says. “Even now, more than 50 percent of the patients we see have had symptoms for more than two years without a diagnosis.” 

As a result, only a handful of U.S. surgeons treat TOS cases with any frequency and many perform only about three to five surgeries a year. However, Dr. Thompson’s average is about 250 to 300 surgeries annually. Because of Dr. Thompson’s experience and success with TOS surgeries, the Center draws some 400 to 500 new patients a year from the Midwest and across the country, and some from as far away as Ireland, Israel, and Russia. 

Many of these patients, like Julie, learn about Dr. Thompson through word of mouth. But Dr. Thompson said they also find him through patients’ social media postings and internet searches that lead to the Center’s website. 

Sharing Knowledge to Get People Back in the Game 

In addition to treating patients and providing life-changing surgery, the Center maintains a comprehensive database of TOS patients. This database, which was started in 2008, contains critical information including surgical findings and evaluations of clinical and functional outcomes. Thanks to loyal donors, The Foundation for Barnes-Jewish Hospital is able to provide funding to Dr. Thompson to collect this important information and conduct clinical research. 

The database shows that patients of all ages and backgrounds are affected by TOS. Dr. Thompson said a majority of his patients are physically active people from teenagers to their 40s, but have included older patients like a woman in her 70s who wanted to keep working as a water aerobics instructor. 

“Everybody has a story,” Dr. Thompson says. “It’s the most rewarding practice I can imagine by being able to help give someone back their career and active livelihood.” 

He has a strong following among professional athletes, especially Major League Baseball (MLB) pitchers, who are particularly susceptible to injury because of repetitive overhead arm movement. 

In fact, his office is packed full of memorabilia from patients thanking him for returning them to normal life. These keepsakes include signed jerseys from famous MLB players as well as a wide assortment of remembrances from other grateful patients including a fireman’s helmet, ballet pointe shoes and even a hair stylist’s scissors framed in a shadow box. 

“He’s got lots of love hanging on those walls,” Julie says. “I only wish I would have found Dr. Thompson sooner. He’s a man of knowledge and talent and a man of real heart.”