In 2017, Karen English began experiencing pain related to Thoracic Outlet Syndrome (TOS). After nearly a year of medical consultations, she was referred to the Division of Thoracic Surgery to meet with Dean Donahue, MD, the director of the TOS Program.
For the past 10 years, Kerri Smart’s life has been a blur of doctor appointments, late-night Internet searches and frustration, all because of Thoracic Outlet Syndrome (TOS), a disorder that results from compression or irritation of the nerves and blood vessels at the base of the neck and front of the chest underneath the collarbone.
Kerri and three of her children—her son Michael and twin daughters Ashtyn and Brett—have been gradually diagnosed with the disorder over the past decade and treated at Massachusetts General Hospital. Originally from Massachusetts, Michael was the first to exhibit symptoms. It took nearly two years for them to be characterized and longer for the family to discover Dean Donahue, MD, the director of the Mass General TOS program. Over the past few years following Michael’s treatment, Kerri and her daughters have all sought consultation from Dr. Donahue and treatment for TOS.
Kerri describes the family’s journey with this elusive disorder and the steps they took to pursue the best possible treatment.
The Start of a Long Journey
Michael Smart was 12 years old when he first began experiencing severe chest pains. An avid athlete since childhood, he’d learned at a young age to manage similar symptoms related to his sports-induced asthma. This was different. Michael turned to his mother for help when the pain worsened and coupled with other symptoms including migraines and collarbone pain as well as weakness in his shoulder, arms and hands.
For the next two years, Kerri searched for a solution to her son’s pain. There were countless visits to the family’s primary care physician and referrals to specialists including pulmonary, cardiac, neurology and orthopedic physicians. Finally, Kerri learned that Michael’s symptoms aligned with those of Neurogenic (N)TOS.
Though she and her family were living in Windermere, Florida at this time, she booked an urgent appointment with an out-of-state surgeon who came highly recommended for treating TOS. Michael was quickly admitted for his first decompression surgery, which included removing part of his first rib. He then underwent a second surgery on the opposite side.
I’ll never forget the Sunday morning when I got down on my hands and knees and asked God, ‘Where do I take this kid next?’
After the operations, Michael’s symptoms plateaued before becoming much worse.
Michael quickly lost strength in both of his arms as well as a significant drop in blood pressure when he held them at shoulder height. He remembers an intense pain, tingling and numbness that crippled him to the point that he could not get through a school day.
“I’ll never forget the Sunday morning when I got down on my hands and knees and asked God, ‘Where do I take this kid next?’” Kerri said. She continued researching her son’s condition until she discovered Dr. Donahue.
The First Visit at Mass General
In 2013, almost three years after Michael’s initial surgeries, Kerri and her son flew to Boston for their visit with Dr. Donahue, during which, he confirmed that Michael would need revision surgery.
“Every doctor in the past had told us that Michael would never play ball again,” Kerri said. “But I never lost faith and refused to let Michael lose his. Michael’s window at Mass General overlooked the Charles River and three baseball fields which gave him an incredible glimpse of hope.”
After his first surgery, Kerri was brought to tears when he greeted her with a thumbs up as she entered his recovery room—a motion Michael had not been able to make for some time.
The day after Michael’s second surgery, he asked the care team to discharge him as soon as possible. “I was stubborn and wanted to watch the Red Sox win the World Series,” Michael said. "Even as an 18-year-old, the care team respected my wishes. They discharged me after 24 hours, once they knew my vitals were good.”
In January 2014, only three months after his second and final surgery at Mass General, Kerri remembers the miracle that occurred in her son’s life.
“After not playing ball for years, Michael tried out for the West Orange varsity baseball team in Florida and made it. A month later, he was named MVP of a highly competitive invitational high school tournament at LeGrange, Georgia out of 170 kids and hit his first homerun,” Kerri said. “I cried the whole six hours I was driving back home from the game.”
Today, Michael is a 23-year-old corporal and field training officer. During his career, he has received two life-saving awards, a DEA award and was named Rookie of the Year as well as Officer of the Quarter.
“Dr. Donahue gave Michael his life back,” Kerri said. “His body couldn’t handle life before the surgeries. I couldn’t imagine where we’d be without Dr. Donahue.”
When Genes Play a Role
As Michael returned to his life, Kerri’s attention turned to her then-15-year-old daughter Ashtyn, a competitive dancer and advanced show choir performer in her school’s musical theater program, who had begun exhibiting all the same symptoms as her older brother. When Ashtyn’s symptoms quickly became debilitating, Kerri brought her in for a consultation with Dr. Donahue right away.
“I couldn’t believe this was happening again, but I was so grateful I knew where to take her,” Kerri said. Dr. Donahue prescribed her three rounds of injectable treatments for relief. After a thorough evaluation of Ashtyn’s symptoms, Dr. Donahue recommended bilateral surgery.
Before her operations, Ashtyn was slated to perform in her school’s rendition of Beauty and the Beast. However, the week before opening night, her upper body was too swollen and her neck too crooked to participate comfortably. She required a muscle relaxer to get through her performance.
Today, almost a year after her last surgery, Ashtyn is thriving on stage again. “Seeing her back on stage was unforgettable,” Kerri said. “It’s remarkable how quickly she’s bounced back and recovered.”
A More Personal Experience
With her children on the mend, it’s only recently that Kerri has expressed the same symptoms of TOS in her own body. She admits that the symptoms had been present for a long time, even during the early stages of Michael’s journey; however, she had never thought to attribute them to TOS, as many years prior she had been diagnosed with peripheral neuropathy, a condition that results from nerve damage, as well as erythromelalgia, a rare condition that causes burning pain in extremities (feet and hand). Both of these conditions can produce similar symptoms to TOS such as joint, bone and nerve pain.
It wasn’t until the pain started in Kerri’s collarbone and neck that she knew, without a doubt, she too had it.
“After Ashtyn finished up her second follow-up and was told she was in the clear, I turned to Dr. Donahue and said, ‘I think it’s my turn to get checked out,’” Kerri said. “I’d always ignored the symptoms because I felt like my children needed my full attention.”
After an appointment with Dr. Donahue, Kerri learned she was suffering from severe compression of her subclavian artery on the left side and moderate compression on her right—just like her children.
In the midst of Kerri’s treatment, Brett, twin sister to Ashtyn, began to exhibit symptoms of the disorder. After a consultation with Dr. Donahue, Brett learned she also suffered from TOS and was scheduled for surgery.
Today, Kerri has had three surgeries of her own and is on the path to healing and recovery.
“Dr. Donahue has given my whole family their health back and I can’t imagine being in the care of any other surgeon,” Kerri said. “TOS is an undeniable pain. Everyone should have the healthiest life possible, and I’m grateful my children and I can have ours.”