Most people have to visit an average of seven different doctors and face several years of misdiagnoses to finally discover they have a rare condition known as thoracic outlet syndrome, or TOS. Shana Baldwin lived that painful experience and is now trying to change that for others.
Once she discovered Robert Thompson, MD, a Washington University vascular surgeon and director of the Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital, Shana’s life improved dramatically. Today, she’s supporting Dr. Thompson’s work and building awareness about TOS to help others around the world.
SHEDDING LIGHT ON TOS
TOS is a condition that involves compression of the nerves or blood vessels that pass through the base of the neck on the way to serve the arm and hand. Symptoms include disabling pain in the neck, shoulder, and upper back, in addition to pain, numbness, tingling, and fatigue in the arm, hands, and fingers.
The lack of awareness about TOS in both the general and the medical community sparked Shana’s mission to bring more attention and funding to the diagnosis, study, and treatment of TOS.
“Aside from the very few physicians who chose to specialize in TOS, this is a condition that has been so neglected since the phrase ‘thoracic outlet syndrome’ was first coined back in 1956,” Shana says. “It took until 2013 to even have a dedicated textbook about it.”
Dr. Thompson was behind that textbook creation. In 2009, he hosted doctors from around the country at the first-ever TOS national symposium at Washington University. The educational event was made possible through gifts to the Thoracic Outlet Syndrome Fund at The Foundation for Barnes-Jewish Hospital.
Foundation support also enabled Dr. Thompson to lead the development of a nationwide Consortium for Outcomes Research and Education on TOS to improve patient care.
A YOUNG LIFE, INTERRUPTED
Shana’s journey with TOS began in 2009 when her life was interrupted by terrible neck pain and headaches. By 2015, she suffered from them daily but assumed her pain was just a lasting side effect of whiplash from a 2001 car accident. She was unaware at the time that whiplash can lead to TOS.
Over the next year, her symptoms multiplied to include pain in her shoulder blade and thumb. Her arm became so fatigued during certain activities that simply brushing her teeth was exhausting. And her hand was perpetually cold, painful, and blue—and it kept getting bluer. Shana jokes that it looked like a “zombie hand.”
“I couldn’t hold a piece of paper between my thumb and forefinger without pain,” she says. “Pain just became part of my daily life.”
Shana was desperate for answers and relief. After neither her orthopedic surgeon nor her primary care physician could diagnose her condition, Shana initiated her own research. She found limited sources of reliable information until she discovered Dr. Thompson’s website for his TOS center, which included a comprehensive list of TOS symptoms that were all too familiar to her.
Remarkably, Dr. Thompson was right in her own backyard in St. Louis. Shana soon learned people came from all over the world for TOS treatment by the expert surgeon.
Barnes-Jewish established the first multidisciplinary center in the country to focus on TOS and related conditions. With expertise in treating all forms of TOS, Dr. Thompson has performed more than 4,500 surgeries throughout his career.
In September 2017, Shana finally met Dr. Thompson. After thorough clinical testing and evaluation targeted directly at TOS, Dr. Thompson diagnosed her with neurogenic TOS, the most common type of TOS. It’s also the most difficult to detect through conventional imaging and testing.
At last, Shana had an answer—and a solution.
Following several weeks of physical therapy, Shana had surgery in January 2018. Dr. Thompson removed Shana’s top rib and two muscles from her neck and used other techniques to decompress the nerves that supply her arm. Her headaches disappeared almost instantly, and her blue hand regained its color.
After nearly 10 years of unrelenting pain and misdiagnoses, Shana was finally beginning to feel like herself again. Unfortunately, several months into her surgery recovery, she suffered an additional injury that resulted in a rare recurrence of her TOS symptoms.
Thankfully, Dr. Thompson was able to perform surgery to once again fully decompress Shana’s nerves. Though Shana is still healing, she can now brush her teeth without exhaustion, play with her dog, and enjoy going out to dinner without fear of pain interrupting the evening.
“I don’t know where I would be today without Dr. Thompson,” she says.
In gratitude, she made Dr. Thompson and his staff white chocolate candies molded into the shape of the rib thathe removed. Then, she became a tireless advocate.
A LIFELINE OF HELP AND HOPE
Because of her lengthy journey, Shana is dedicated to helping others with TOS find answers and care more quickly. She serves as an administrator of the Thoracic Outlet Syndrome (TOS) Support Group on Facebook that includes more than 12,000 members.
A paralegal, Shana transformed her investigative skills and traumatic experience into a lifeline for others. She devotes hours each day to monitoring group posts, responding to members, and
conducting research for its members.
As one of the most experienced TOS surgeons in the country, Dr. Thompson is a primary source of information for Shana.
“TOS is a small world—and Dr. Thompson treats this world,” she says. “A large number of surgeons who perform TOS surgery around the country were trained by Dr. Thompson. Ninety-five percent of everything I know about TOS, I learned from him.”
Shana recognizes TOS research is vastly underfunded in the United States. So she is trying to change that. She started with her own gifts to the Foundation’s Thoracic Outlet Syndrome Fund, which supports Dr. Thompson.
She’s been donating to the fund since 2020, and she encourages others to also donate.
“Once I learned everything that Dr. Thompson is able to do with the funding, it was a total no-brainer to give,” she says. “Any money in his hands is well spent to help with research, training, and creating awareness.”
Shana’s spark is lighting the way to hope and healing as she connects TOS patients to each other and to life-changing treatment.
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