It’s something many of us have tried—searching the internet to self-diagnose a medical problem. Just type in the symptoms you are experiencing and hit "search." At age 26, Julia McCoy had arm and neck pain that wouldn’t go away. She saw her primary care doctor, an orthopaedic surgeon, a physical therapist and had a nerve conduction study—all to no avail. The pain persisted.
A student at Towson University, McCoy couldn’t carry a backpack or use the stairs. Unable to go to the gym or walk her dog, she was confined to the couch in constant pain.
So she searched online. “Poor hand strength. Collar bone pain. Neck pain. Hand turning purple." The unofficial diagnosis? Thoracic outlet syndrome, or TOS, a syndrome that occurs when blood vessels between the collarbone and first rib are compressed, leading to many of the symptoms McCoy had.
The Search for Treatment
McCoy’s next online search was for physicians who treat TOS. Enter Maggie Arnold, M.D., a vascular surgeon at Johns Hopkins Bayview Medical Center who specializes in thoracic outlet syndrome.
Dr. Arnold took a thorough patient history and conducted a physical exam. She also performed an ultrasound to look for compression. McCoy showed compression of her blood vessels, which explained why her hands were turning purple. Diagnosis: neurogenic thoracic outlet syndrome.
TOS can be caused by injury, anatomical defects, tumors that press on nerves, poor posture, pregnancy or repetitive arm and shoulder movements and activity. In McCoy’s case, Dr. Arnold suspects that it may have developed as a result of overuse, since she was quite active in athletics.
Treatment options for TOS range from conservative, non-surgical approaches such as physical therapy and injections to more aggressive options like surgery and McCoy had a compelling reason to start with the most conservative treatment––she is a recovering alcoholic who is highly motivated to avoid medications.
Dr. Arnold prescribed physical therapy, but McCoy didn’t get results. Next was an injection of Botox®. The pain subsided for nearly four months.
McCoy will be the first to admit she was not a compliant patient. She returned to the gym
sooner than recommended, and paid a price. The pain returned, and a second Botox® injection did not work as well as the first.
McCoy and Dr. Arnold were ready to talk about surgery--a resection of her first rib. During the 60- to 90-minute procedure, the first rib is removed, usually through an incision in the underarm. This makes more space for the nerves that go from your neck to your arms and relieves the nerve compression. Patients are able to regain their full shoulder movement and strength through physical therapy.
The rib resection successfully eliminated McCoy’s arm pain, but the neck pain eventually returned.
Determined to help McCoy return to the quality of life she had lost to pain, Dr. Arnold connected her to a pain management specialist who could formulate a personalized medication plan that took all of her unique needs into account.
In August 2016, Allan Belzberg, M.D., a neurosurgeon at The Johns Hopkins Hospital, performed a procedure called a neural lysis to repair and decompress the nerves in McCoy’s clavicle area. At last, she was on a road to recovery.
With her pain behind her, McCoy is back to the gym, able to hike with her dog, and no longer needs a rolling backpack at school. Inspired by her care team, she is changing her educational path from nursing to pre-med. “Dr. Arnold had my back and was always accessible to me,” she says.