November 16, 2009
Kathleen McClure has wanted to be a ballerina for as long as she can remember.
At age 2, Kathleen informed her mother, Judy McClure, that she would like to take ballet lessons. Judy told her she’d have to wait until she was a little older. Shortly thereafter, Kathleen said to a stranger in the grocery store, “I want to take ballet, and my mommy won’t let me.”
“So I found a place that took 2-year-olds,” Judy says.
The McClures live in Houston.When Kathleen was 4, she started at the Houston Ballet Academy. For the past few years, she went to high school in the mornings and spent her afternoons and part of her evenings at the ballet academy.
“I’ve given up a lot of things other kids do, and I don’t regret that at all,” Kathleen says.
Her life revolves around ballet. Giving it up seems unimaginable. But she nearly had to.
One day in May 2008, Kathleen woke up with a terribly painful and swollen arm. An ultrasound revealed a blood clot in her arm, while a CT scan showed three clots in her lungs. Kathleen saw doctor after doctor, undergoing a host of tests and procedures as her symptoms worsened until she couldn’t even hold a fork. As a result, she missed an opportunity to attend the School of American Ballet in New York for the summer and the Royal Ballet in London where she had been admitted.
After six weeks, the McClures were told that the blood clot still remaining couldn’t be removed because it was too close to Kathleen’s heart.
Without the full use of her arm, Kathleen’s dreams of becoming a professional ballet dancer seemed to be slipping away.
Discovering Hope in a Stranger’s Story
One day, Kathleen’s father, Dan, heard a life-altering story on television. The College World Series announcers were talking about a university pitcher who had undergone a surgical procedure at Barnes-Jewish Hospital for venous thoracic outlet syndrome (TOS), a condition with symptoms that sounded similar to what Kathleen was experiencing.
TOS involves compression of the blood vessels that connect to the arm. Patients often experience chronic pain, numbness and tingling in the arm and hand or in the base of the neck, and some patients may have arm swelling and discolorations. TOS frequently strikes young, otherwise healthy, active people. There are three types of TOS: neurogenic, venous and arterial. Each is treated somewhat differently.
Kathleen found the university pitcher on Facebook, and he told her to go to Barnes-Jewish Hospital in St. Louis to see Robert Thompson, MD, the Washington University vascular surgeon who had performed his surgery – and saved his baseball career.
Dan called Dr. Thompson and talked with him, and the family soon flew to St. Louis. From the moment the McClures arrived at Barnes-Jewish, they knew they were in the right place – and that Kathleen was in good hands.
Establishing an Impressive Reputation
Dr. Thompson is director of the Center for Thoracic Outlet Syndrome at Barnes-Jewish. But his expertise is rare. Barnes-Jewish’s center is the first multidisciplinary center in the country to focus on TOS and related conditions. Dr. Thompson estimates that only several dozen physicians in the United States perform TOS operations with any frequency. Many patients experience symptoms for years or may undergo other types of operations without improvement before a doctor even considers TOS as a diagnosis.
Consequently, TOS patients often end up doing their own research – and many find Dr. Thompson. People from all over the country – most of them young and many of them athletes – visit Dr. Thompson each year. For those who have TOS, surgery is often the best option. One of the most unique aspects of Dr. Thompson’s practice is that he focuses entirely on TOS and treats patients with all three types of the condition.
To educate health care providers and raise awareness about TOS, this fall the Washington University School of Medicine and Barnes-Jewish Hospital, with support from the Barnes-Jewish Hospital Foundation, hosted the first nationwide professional conference and patient advocacy meeting on the condition. Dr. Thompson was a co-director.
“I really enjoy seeing patients with TOS, in large part because I think we can offer them something that others can’t,” he says. “And patients are grateful for someone just listening and caring.”
After Dr. Thompson operates on patients, he often suggests that they send him an item for the “TOS Hall of Fame.” Their contributions – including several autographed baseball jerseys, an American flag flown by an Air Force jet fighter, a well-marked drum top and even a blow dryer – are displayed all over his office.
His TOS Hall of Fame has many baseball jerseys because baseball players and other athletes make up a fairly high proportion of TOS patients. Colorado Rockies pitcher Aaron Cook was one of them.
Saving a Major League Career
In 2004, Cook was the Rockies’ starting pitcher in a game against the Cincinnati Reds. He had been experiencing shortness of breath but didn’t think much of it.
In the third inning, he became lightheaded and was taken to the emergency room, where he learned he had developed a pulmonary embolism.
Cook was soon diagnosed with a clot in the subclavian vein caused by venous TOS. According to Dr. Thompson, about 10 percent of venous TOS patients can have a pulmonary embolism, which can be life-threatening. Pulmonary embolism is when an artery in the lung becomes blocked by blood clots that travel to the lungs from another part of the body.
“Our trainers did a lot of research to find who was the best doctor doing this kind of surgery on professional athletes and getting them back to the level they were before,” Cook says. “We decided Dr. Thompson had the best résumé.”
Dr. Thompson performed surgery on Cook. As Cook recovered, he spent a brief rehabilitation assignment in the minor leagues before making it back to the majors the next spring. Later that year, he pitched in the World Series. In 2008, he pitched three scoreless innings in the Major League Baseball All-Star Game.
“Any time I talk to anyone about TOS, I recommend Dr. Thompson,” Cook says.
Dancing and Dreaming
Dr. Thompson operated on Kathleen McClure in July 2008. Within two months she was back to performing all her ballet arm movements.
“Kathleen did just fantastic,” Dr. Thompson says. “I have a picture of her doing ballet at 16 weeks after surgery.”
She also sent him a pair of her pointe shoes for his TOS Hall of Fame.
Kathleen, who had been devastated when she had to miss the School of American Ballet in New York in 2008, got to go after all. She spent five weeks there this past summer before attending the Princess Grace Ballet Academy in Monaco.
She’s now studying at Ecole-Atelier Rudra Béjart – a ballet school in Switzerland. She hopes to join a professional dance company when she finishes the program in 2011.
“I am so excited to have this opportunity,” Kathleen says. “It wouldn’t have been possible without Dr. Thompson. I’m his No. 1 fan.”
Gifts to the Foundation Advance Dr. Thomson’s Research for TOS Patients
In 2008, the Barnes-Jewish Hospital Foundation and Washington University School of Medicine made a partnership commitment to support a full-time clinical research coordinator for the Center for Thoracic Outlet Syndrome over the next three years. This person will play a crucial role in Dr. Robert Thompson’s work to develop a nationwide Consortium for Outcomes Research and Education on Thoracic Outlet Syndrome (TOS).
The Consortium will enable physicians to better define concrete, consistent diagnostic criteria for each form of TOS, and to pinpoint for the first time exactly which treatments produce the best outcomes. This shared base of information will permit physicians around the country to successfully diagnose TOS in their home communities and to help direct care to the centers where the best evidence-based outcomes are achieved.
The Foundation’s funding for Dr. Thompson, which advances our hospital’s mission of supporting the discovery of new information about complex diseases, is possible because of gifts to the Foundation’s Thoracic Outlet Syndrome Fund that are designated to Dr. Thompson.
To learn more about supporting Dr. Thompson and the Thoracic Outlet Syndrome Fund, please call David Sandler at (314) 362-3499 or email firstname.lastname@example.org
From Barnes-Jewish Hospital Foundation’s Giving Magazine, 2009, Issue 2