Neurofibromatosis (NF) is a group of genetic disorders that cause tumors to grow on nerve tissue throughout the body. These tumors — called neurofibromas — can develop anywhere, but when they affect the face, they can cause significant disfigurement, functional impairment, and profound psychological impact.
NF is not caused by anything a parent did or didn't do. It is a genetic condition — sometimes inherited, sometimes arising spontaneously. While there is currently no cure for NF, the facial tumors and their effects can be treated surgically, often with dramatic improvement in both appearance and quality of life.
The most common form, affecting approximately 1 in 3,000 people. NF1 is characterized by café-au-lait spots, skin neurofibromas, and in some cases, plexiform neurofibromas — larger, more complex tumors that can grow along nerve pathways beneath the skin. Facial plexiform neurofibromas can cause progressive disfigurement and may involve the orbit (eye socket), eyelids, cheek, or entire side of the face.
Less common than NF1, affecting approximately 1 in 25,000 people. NF2 is characterized primarily by tumors on the vestibular nerves (which affect hearing and balance), known as vestibular schwannomas or acoustic neuromas. Removal of these tumors can damage the facial nerve, causing facial paralysis — which Dr. Panossian treats through facial reanimation surgery.
The third major group of neurofibromatosis. Schwannomatosis is a rare condition characterized by the formation of multiple nerve sheath tumors (called schwannomas) throughout the body. Unlike NF2, schwannomatosis typically does not involve vestibular schwannomas. The primary symptom is chronic pain, which can be debilitating. Surgical excision of painful schwannomas can provide significant symptom relief.
When neurofibromatosis involves the face, it can affect virtually any structure — skin, soft tissue, bone, nerves, and blood vessels. Common facial manifestations include:
The psychological burden of facial NF should not be underestimated. Many patients experience social isolation, depression, and anxiety related to their appearance. Surgery addresses not just the physical manifestations but the emotional and social dimensions of the condition.
Surgery for facial neurofibromatosis is among the most challenging in all of plastic surgery. The tumors are often intimately involved with critical nerves and blood vessels, and the distorted anatomy requires a surgeon with deep reconstructive experience and comfort with complex facial anatomy.
Dr. Panossian's approach typically involves:
Each surgical plan is highly individualized. Some patients benefit from a single procedure; others require multiple staged operations over months or years. Dr. Panossian works with each patient and family to develop a realistic timeline and set appropriate expectations.
Many of Dr. Panossian's NF patients have shared their stories publicly — including on TLC's About Face — to raise awareness and inspire others living with the condition.
Featured on TLC's About Face, this patient's multi-stage surgical journey removed extensive facial neurofibromas and restored both form and confidence — inspiring thousands of NF patients watching at home.
After years of avoiding social situations due to facial disfigurement, this patient underwent staged tumor resection with Dr. Panossian and became an advocate for the NF community.
Living with neurofibromatosis is a lifelong journey, and no one should face it alone. These organizations provide valuable support, education, and community for NF patients and families:
The leading nonprofit dedicated to NF research and patient support. Offers educational resources, clinical trials information, patient registries, and community events.
A comprehensive resource for NF patients and families, providing information about treatment centers, support groups, financial assistance, and advocacy opportunities.
Dr. Panossian's partner organization for humanitarian surgical missions — providing reconstructive surgery to children with craniofacial conditions, including NF, in underserved communities worldwide.
Regional support organization offering patient education, family resources, and connections to NF specialists for comprehensive management across multiple medical disciplines.
If you or your child is living with neurofibromatosis, Dr. Panossian can help you understand your surgical options. Schedule a consultation — in person or virtual — to take the first step.
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