Miranda’s Story

Neurogenic TOS/Pectoralis Minor

“I knew my child and I knew the doctors were wrong.” Rhonda Epstein was determined to find out what was wrong with her daughter, Miranda. An athletic 15-year-old, Miranda was involved in multiple sports and a member of a competitive volleyball team when she started losing feeling in one arm in 2007. At first, the family attributed the symptoms to over-activity, but over the next year, the numbness and pain increased, along with muscle spasms in her back.

“She started telling me that she couldn’t feel her arms and then she noticed that her arm would sometimes turn purple or feel cold,” says Rhonda.  One day, the school nurse called home and said Miranda couldn’t pick up a pencil while taking a test. “I just couldn’t close my fingers,” says Miranda. “They felt like they were just locked and wouldn’t move.”

When doctors couldn’t find a cause for the symptoms, Miranda was told that she may be suffering anxiety attacks, which caused her to “over-exaggerate” her problems. “My child went from being incredibly active to not being able to walk or get out of bed,” says her exasperated mother. “She was not imagining her pain.” Sent to a rheumatologist in St. Louis, the Epsteins had a chance meeting with a medical intern from Washington University School of Medicine who noticed that Miranda’s symptoms were worse whenever she raised her arms. “He was the first to bring up the possibility of thoracic outlet syndrome,” says Miranda. “After that, we took his advice and scheduled an appointment with Dr. Robert Thompson.”

Dr. Thompson, a board-certified vascular surgeon and director of the Washington University Center for Thoracic Outlet Syndrome Center at Barnes-Jewish Hospital, confirmed a diagnosis of neurogenic TOS. Thoracic outlet syndrome is an uncommon disorder that occurs when a nerve, vein, or artery becomes compressed between the first rib and the collarbone. It usually affects individuals under age 45 and can result from compression due to overhead movements, injury, repetitive strain, or congenital anomaly.

“Thoracic outlet syndrome is classified into three primary types, based upon what part of the anatomy is compressed — nerve, vein or artery — and whether there is an underlying congenital anomaly, like an extra rib, or a traumatic injury,” says Dr. Thompson. “In Miranda’s case, her symptoms probably were caused by the repetitive overhead motion in her sports activities, which resulted in pressure on the brachial plexus nerve roots. This type of TOS, called neurogenic TOS, is the most common form of the syndrome and is treated with physical therapy, surgery, or a combination of these two treatment modalities. The principal site of nerve compression in Miranda’s case was at the level of the pectoralis minor muscle tendon underneath the collarbone, for which surgical treatment can produce excellent results.”

Dr. Thompson first had to identify the origin of Miranda’s back pain, which he believed was unrelated to her TOS diagnosis. After reviewing X-rays, he referred Miranda to a pediatric neurologist who specialized in spinal disorders. Miranda was found to have a double fracture in her lumbar spine that was close to her spinal cord. To treat that problem, Miranda was placed in a back brace and completed several weeks of physical therapy. When the back brace was removed, she returned to Dr. Thompson. On Halloween 2008, Miranda underwent a bilateral pectoralis minor decompression surgery, during which Dr. Thompson separated the pectoralis minor muscle tendons to relieve tension on the brachial plexus and the pain it had caused in her shoulders and neck.

“I was told it would take up to three months to get back to normal, but I went back to school and tried out for basketball three weeks after surgery,” says Miranda. “I’d occasionally feel some tingling or pain in my shoulder or neck, but nothing like before. Now, the problems are all gone and I have no restrictions on what I can play.”

In the weeks and months that followed, she passed her lifeguard training test and taught swimming lessons as well as played volleyball again. Basketball is on the horizon again this year.

“I’d like to play sports in college,” the sophomore from Owensville, Mo., says. “For now, I’m busy and happy that I can play the sports that I like.”

For more information about TOS or to schedule an appointment with the specialists with the Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital, please call  Della Brink at (314) 362-7410.