In 2006, Laura Barbieri was delighted with her role as a clarinetist in the Houston Grand Opera Orchestra, when she noticed one day that the hearing in her right ear felt blocked. “It was soon after I had the flu,” she recalls, “so I just assumed that it was a lingering symptom.” But the problem persisted, and by 2008, she experienced a progressive decline in hearing in that ear as well as tinnitus. A brain scan revealed a benign tumor about the size of a grape growing on the nerves that control hearing and balance. In April 2009, the tumor was removed by a surgeon in Los Angeles, but by then, Barbieri had entirely lost hearing in her right ear.
Fearing further damage to her hearing, Barbieri consulted several neurosurgeons, including John G. Golfinos, MD, chair of the Department of Neurosurgery at NYU Grossman School of Medicine. Dr. Golfinos told her that he suspected an underlying condition known as neurofibromatosis type 2 (NF2). A genetic condition that affects about 1 in 25,000 people, NF2 causes tumors to grow on the nerves of the peripheral nervous system.
Dr. Golfinos’s professional instinct proved correct. A follow-up scan showed another tumor budding on the nerves of her left ear. “I consulted a ton of doctors,” she recalls, “but Dr. Golfinos was the only one who discerned that I had NF2.” For Barbieri, a classical musician who had spent two decades honing her skills to earn a coveted spot in a major orchestra, the diagnosis was “earth shattering.” She describes music as her primary language. “Playing,” she says, “was the thing that made me feel most fulfilled, the thing I felt I most had to offer the world.”
In 2010, Barbieri moved to New York for a job, settling in the Prospect Heights area of Brooklyn. She continued her care at NYU Langone’s Comprehensive Neurofibromatosis Center, the largest neurofibromatosis clinic in the United States. The connection not only afforded her the highest level of multidisciplinary expertise, but also led to an unprecedented surgical intervention to stem the escalating damage caused by NF2.
By January 2021, Barbieri had gone completely deaf and started to notice tingling on the left side of her face, along with weakness that made it difficult to smile or raise an eyebrow. A tumor compressing the brainstem can affect facial movement, swallowing, and vocalization, among other things. Barbieri was forced to communicate with a voice-to-text app on her phone.
With Barbieri’s auditory nerve now irreparably damaged, J. Thomas Roland, Jr., MD, chair of the Department of Otolaryngology—Head and Neck Surgery at NYU Grossman School of Medicine, recommended an auditory brainstem implant (ABI), a device that can recreate the electrical pathways that normally stimulate the auditory nerve and enable the brain to interpret sound. NYU Langone is one of only three medical centers on the East Coast to offer the device. Since its U.S. Food and Drug Administration (FDA) approval for patients with NF2 in 2000, thanks in part to Dr. Roland’s pioneering work on the clinical trial, Dr. Roland and his team of neurotologists have successfully treated more than 150 patients. “I can’t cure this disease surgically,” explains Dr. Roland, “so my aim is to restore some of the hearing the patient has lost.”
A complex case like Barbieri’s would typically involve three separate surgeries—one to remove the tumor, another to implant the ABI, and a third to reanimate the facial nerves—each requiring a lengthy recovery. But Dr. Roland conceived a surgical plan—never before attempted at NYU Langone or, to his knowledge, any other medical center—in which all three operations could be performed sequentially in a single day. He knew Barbieri was up for it. “Laura is a remarkable person,” he says. Barbieri had previously completed 3 Ironman triathlons, a dozen Half Ironman competitions, and 24 marathons—feats that, she says, “made me feel like I was stronger than the disease.”
Dr. Roland conceived a surgical plan—never before attempted at NYU Langone or, to his knowledge, any other medical center—in which all three operations could be performed sequentially in a single day.
In March 2021, 15 years after neurofibromatosis had started to rob Barbieri of her hearing and her livelihood, she entered an operating room at NYU Langone to regain some of what she had lost. After Dr. Golfinos and Dr. Roland removed the tumor, they began the process of implanting the ABI. Then, Adam S. Jacobson, MD, a head and neck surgeon who is director of the Facial Paralysis and Reanimation Center, performed grafts to rewire Barbieri’s facial nerves and provide a new electrical supply to weak muscles that, over time, would restore tone and movement to the left side of her face. “Close teamwork is what allows us to tackle the most difficult cases with confidence,” notes Dr. Golfinos. “It’s unlikely that we’ll encounter problems we haven’t seen before, but if we do, we’ll be able to handle them.”
Barbieri, now married, reports that she’s already regained some facial tone and movement. Dr. Jacobson expects her to continue to improve for up to two years after surgery. “My NYU Langone doctors have been absolutely amazing,” says Barbieri. While she is still unable to hear music, she credits the ABI with keeping her connected to it. “It jogs my memory of music and allows me to imagine what might be happening in my own mind,” she says. “If there’s music playing, at least I can hear the rhythm, the percussion. These little things make a big difference.” Barbieri’s recovery has inspired her to pursue a new direction professionally. Formerly in sales, she’s now thinking about working with people who have experienced hearing loss. “As someone who has gone through this experience, and having been a musician, I think I’m in a unique position to help people work through this process,” she says.