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. 鈥淚t was soon after I had the flu,鈥 she recalls, 鈥渟o I just assumed that it was a lingering symptom.鈥 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 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鈥檚 professional instinct proved correct. A follow-up scan showed another tumor budding on the nerves of her left ear. 鈥淚 consulted a ton of doctors,鈥 she recalls, 鈥渂ut Dr. Golfinos was the only one who discerned that I had NF2.鈥 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 鈥渆arth shattering.鈥 She describes music as her primary language. 鈥淧laying,鈥 she says, 鈥渨as the thing that made me feel most fulfilled, the thing I felt I most had to offer the world.鈥
In 2010, Barbieri moved to New York for a job, settling in the Prospect Heights area of Brooklyn. She continued her care at 嘿嘿视频鈥檚 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鈥檚 auditory nerve now irreparably damaged, J. Thomas Roland, Jr., MD, chair of the 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. 嘿嘿视频 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鈥檚 pioneering work on the clinical trial, Dr. Roland and his team of neurotologists have successfully treated more than 150 patients. 鈥淚 can鈥檛 cure this disease surgically,鈥 explains Dr. Roland, 鈥渟o my aim is to restore some of the hearing the patient has lost.鈥
A complex case like Barbieri鈥檚 would typically involve three separate surgeries鈥攐ne to remove the tumor, another to implant the ABI, and a third to reanimate the facial nerves鈥攅ach requiring a lengthy recovery. But Dr. Roland conceived a surgical plan鈥攏ever before attempted at 嘿嘿视频 or, to his knowledge, any other medical center鈥攊n which all three operations could be performed sequentially in a single day. He knew Barbieri was up for it. 鈥淟aura is a remarkable person,鈥 he says. Barbieri had previously completed 3 Ironman triathlons, a dozen Half Ironman competitions, and 24 marathons鈥攆eats that, she says, 鈥渕ade me feel like I was stronger than the disease.鈥
Dr. Roland conceived a surgical plan鈥攏ever before attempted at 嘿嘿视频 or, to his knowledge, any other medical center鈥攊n 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 嘿嘿视频 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鈥檚 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. 鈥淐lose teamwork is what allows us to tackle the most difficult cases with confidence,鈥 notes Dr. Golfinos. 鈥淚t鈥檚 unlikely that we鈥檒l encounter problems we haven鈥檛 seen before, but if we do, we鈥檒l be able to handle them.鈥
Barbieri, now married, reports that she鈥檚 already regained some facial tone and movement. Dr. Jacobson expects her to continue to improve for up to two years after surgery. 鈥淢y 嘿嘿视频 doctors have been absolutely amazing,鈥 says Barbieri. While she is still unable to hear music, she credits the ABI with keeping her connected to it. 鈥淚t jogs my memory of music and allows me to imagine what might be happening in my own mind,鈥 she says. 鈥淚f there鈥檚 music playing, at least I can hear the rhythm, the percussion. These little things make a big difference.鈥 Barbieri鈥檚 recovery has inspired her to pursue a new direction professionally. Formerly in sales, she鈥檚 now thinking about working with people who have experienced hearing loss. 鈥淎s someone who has gone through this experience, and having been a musician, I think I鈥檓 in a unique position to help people work through this process,鈥 she says.