Violinist Jennifer Koh has spoken publicly for the first time about her decade-long struggle with Parsonage-Turner syndrome, a rare neurological disorder that caused intermittent numbness and weakness in her right hand, threatening her career as a professional musician. The symptoms began about ten years ago during a solo recital in Santa Fe, New Mexico, when Koh suddenly lost feeling in her bow hand. Although she completed the performance, the numbness recurred repeatedly over months, disappearing and returning unpredictably.
Koh’s experience underscores the challenges faced by artists managing chronic illnesses that are often misunderstood or misdiagnosed. Initially, Koh sought medical advice but encountered skepticism and uncertainty. A neurologist dismissed her symptoms as psychological at first and later suggested she might have carpal tunnel syndrome, even recommending she stop playing. “I was so close to giving up hope,” Koh recalled, describing the emotional toll of her medical odyssey.
It was not until she consulted Dr. Christiana Ulane at Columbia University Irving Medical Center that Koh received a diagnosis of Parsonage-Turner syndrome, an uncommon inflammatory condition affecting the brachial plexus—the network of nerves connecting the neck to the shoulder. The syndrome can cause pain, tingling, weakness, and muscle atrophy, as Koh experienced, with visible deformity in her arm. Due to its rarity, there is limited research and no standardized treatment, complicating care.
Koh began intravenous immunoglobulin therapy to modulate her immune response, alongside physical therapy. Yet, progress was slow and fraught with setbacks. Adjusting her violin technique to compensate for sensory loss was difficult, and she grappled with feelings of inadequacy during performance. A significant turning point came during a trip to Korea, where Koh sought alternative treatments after connecting with SoYon Kim, a former violinist who facilitated care at Yonsei University’s Severance Hospital. There, she underwent hydrodissection—a procedure using fluid injections guided by ultrasound to relieve nerve entrapment—combined with acupuncture and herbal medicine, resulting in marked improvement.
Despite ongoing treatments, including repeated hydrodissection sessions and continual visits to Korea, Koh faced persistent challenges. Performance anxiety developed, particularly surrounding the memory of a lost concert due to her symptoms. She pursued eye movement desensitization and reprocessing therapy to address this psychological barrier, which she credits with helping her regain confidence.
In recent months, Koh has returned to full performance capacity. In December 2024, she played Barber’s Violin Concerto without difficulty, describing the experience as reclaiming her true self. Most recently, she completed a marathon recital of Bach’s complete sonatas and partitas at Miller Theater in New York City, a demanding program that she sees as symbolizing her personal and artistic journey from hardship to renewal. During one concert, when a shoulder rest broke mid-performance, Koh adapted seamlessly, viewing the incident as evidence of her regained resilience.
Reflecting on her experience, Koh emphasized the importance of perseverance and maintaining hope despite uncertainty. She also acknowledged the vital role of community and the unexpected benefits of seeking care beyond Western medical centers. Dr. Ulane praised Koh’s determination, noting the rarity of patients pursuing multiple treatment avenues for such complex conditions.
Koh’s story highlights the intersection of art, health, and identity, illustrating the fragile balance musicians must navigate when confronting illness in a highly demanding profession. Her openness may encourage others in the classical music world to address health challenges more candidly while advocating for broader awareness and research into rare neurological diseases.