Neurogenic TOS/Supraclavicular

“I was at the end of my rope. I couldn’t drive, my right hand had curled into a claw, my left arm was painfully weak, and I was suffering from horrific migraines.” For more than seven years — all of her married life — Pamela Poindexter suffered an ever-increasing list of painful symptoms. A former first grade teacher now living in Nevada, Poindexter said she first started going to primary care physicians and then ear, nose, and throat specialists trying to find the cause of symptoms that left her debilitated for months at a time.

“I first was told not to eat any processed foods, to lose weight, and learn stress management,” she says. “I started taking piano lessons in the summer of 2006. Suddenly one day I couldn’t hit the keys and my arms were aching.” The problems progressively worsened. Within two months, her left index finger started jumping uncontrollably and the pain in her arms became almost unbearable. Still plagued with mind-numbing headaches, she was sent for CT scans and MRIs to check for tumors in her sinus cavities. Blood tests were ordered to see if she had an infection. All came back negative. A second MRI showed evidence of two herniated cervical discs, and Poindexter underwent two spinal fusion surgeries over the next year and a half. The two procedures did little to stop the migraines or pain radiating down her arms.

“I went through physical therapy, cortisone injections, and pain management programs for more than a year after that and nothing worked,” says Poindexter. “I finally got a referral for a second neurological opinion and the doctor said the fusions were good, but that I may, in fact, be suffering from thoracic outlet syndrome.”

Thoracic outlet syndrome (TOS) is an uncommon condition that develops when a nerve, vein or artery is compressed in the small area between the first rib and the collarbone. Symptoms range from numbness, weakness or total dysfunction in the upper extremities to chest pain, migraines or dizziness. In many cases, such as Poindexter’s, the symptoms are similar to cervical disc disease.  “I’d never heard of TOS,” says Poindexter, who quickly searched the Internet for information and leading experts.

Her research led her to Robert Thompson, MD, a board-certified vascular surgeon and Director of the Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital.  “My husband and I were concerned that everyone I saw would tell me to have surgery and it wouldn’t help, but by this time, I was on work disability, I couldn’t drive, and could barely do laundry. Every day, I’d be so exhausted in the morning that I’d be in bed from mid-afternoon through the rest of the night. I had to find a solution.”

After a thorough exam, Dr. Thompson concluded that she had neurogenic TOS, which is caused by pressure on the brachial plexus nerve roots in the base of the neck, and he sent Poindexter to colleague Rahul Rastogi, MD, an assistant professor of anesthesiology in the Division of Pain Management at Washington University School of Medicine.  Poindexter received two anesthetic blocks, one into the pectoralis minor muscle and the other into the anterior scalene muscle. The procedures helped to isolate the location of pain and confirmed Poindexter had neurogenic TOS.

“When I first walked in, I was at a pain level of 8,” Poindexter says. “In a half an hour after the nerve block, I was down to a pain level of two. I was so amazed that I finally had some relief. It showed us all that I would be a great candidate for TOS surgery.”
Poindexter underwent complex surgery within days of the diagnosis. Dr. Thompson performed a right supraclavicular thoracic outlet decompression that included the removal of two scalene muscles and the first rib, and a bilateral pectoralis minor tenotomy to release the small pectoral muscles surrounding the thoracic outlet.

“I can honestly say that the migraines stopped the day after surgery,” says Poindexter. “My husband also looked at my right hand and was stunned to see it open. I could tap my fingers for the first time in more than a year.” Less than two months after surgery, Poindexter was headache-free and had no pain in her arms. Choking and swallowing issues that also plagued her disappeared. “I was so grateful. I was beyond surprised. I had come to St. Louis feeling so miserable, and I left singing to the car radio.”

Poindexter continues to improve. She is slowly getting back into the driver’s seat and is gardening in her yard. “I’ve had no complications from the surgery and my goal is to drive from Nevada to New York to visit my family there. I haven’t seen my mother in four years because I couldn’t travel due to pain.

“Dr. Thompson changed my whole life for the better,” she says with a laugh. “My life is on a whole new journey now.”

For more information on the Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital, please call Della Brink at (314) 362-7410.