Help for rare, frustrating breathing condition
Rare condition prevents diaphragm from getting the message to breathe
David Powell could not catch his breath. The 35-year-old from San Diego got winded walking up the stairs, exercising or even just bending over to tie his shoes. His favorite pastime, hiking, became impossible. But doctors, unable to diagnose his condition, told Powell that he would just have to live with it.
Frustrated, he turned to the Internet and discovered that his symptoms could be the result of phrenic nerve damage. The phrenic nerves — there is one on each side of the body — send messages from the brain to the diaphragm telling the body to breathe. Powell also learned that the damage could possibly be repaired through surgery.
Injuries to the phrenic nerve can occur in a variety of ways, including injections of medicine in the neck prior to shoulder surgery or to treat pain, chiropractic adjustments of the neck, or neck, chest or vascular surgery. In addition, scar tissue can form in the neck and compress the nerve. Patients are often misdiagnosed because the symptoms are similar to those of pneumonia or asthma. Doctors typically diagnose phrenic nerve injury by conducting a physical exam, asking the patient about previous medical treatments that may have affected the neck or chest, and considering whether the patient has severe shortness of breath and is unable to perform simple day-to-day activities.
“If we suspect that it is a phrenic nerve injury, there are a couple of tests that can help us make a definitive diagnosis,” said Dr. Reza Jarrahy, an associate clinical professor of plastic and reconstructive surgery at UCLA.
Jarrahy said surgery for the disorder aims to identify the exact location of the injury and then repair it by removing the scar tissue and freeing up the nerve. In some cases, surgeons take a small piece of nerve from the person’s leg and use it as a bypass around the injured nerve, creating a clean route for the nerve signal from the brain to the diaphragm.
Although many people notice an improvement immediately following surgery, it may take a year or more for the new nerve to regrow and form new connections in the body. Also, the diaphragm muscle must be retrained and strengthened again.
“Even though diaphragm paralysis impacts the respiratory system, the underlying pathology is focused on nerves and muscles,” said Dr. Matthew Kaufman, a voluntary assistant clinical professor at the David Geffen School of Medicine at UCLA. “As a result, many medical professionals are unaware of phrenic nerve surgery.”
In 2007, Kaufman began specializing in the procedure at his plastic and reconstructive surgery practice in Shrewsbury, New Jersey. In 2013, he teamed up with Jarrahy to offer the surgery at UCLA. Together, the two centers have treated more than 100 patients, up to 80 percent of whom have made a partial or complete recovery.
“These patients suffer tremendously and yet have very few options,” Jarrahy said. “This surgery offers hope to patients who previously had none and were resigned to dealing with this debilitating condition for life.”
Powell underwent the procedure in August 2013, and is no longer sidelined by his condition. He can once again enjoy all of his favorite activities.
“It’s so much better,” he said. “Before, I pretty much couldn’t do anything, but now I can do exercise—hike, ride my bike and swim.”
