In short: Neurofibromatosis (NF) is a genetic disorder causing tumors on nerve tissue, with its most common form, NF1, affecting approximately 1 in 2,000 to 3,000 people; when it involves the face, it can cause visible changes in appearance and functional impairment. Dr. Andre Panossian, Pasadena, CA, offers specialized surgical treatment — staged tumor resection, nerve-sparing technique, and reconstructive surgery — to restore form, function, and confidence, as featured on TLC's About Face.
What is Neurofibromatosis?
Neurofibromatosis (NF) is a group of genetic disorders that cause tumors to grow on nerve tissue throughout the body. These tumors — called neurofibromas, and in some cases, schwannomas — can develop anywhere, but when they affect the face, they can cause significant changes in appearance, 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.
NF1 vs. NF2
Neurofibromatosis Type 1 (NF1)
The most common form, affecting approximately 1 in 2,000 to 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 changes in appearance and may involve the orbit (eye socket), eyelids, cheek, or entire side of the face.
Neurofibromatosis Type 2 (NF2)
Less common than NF1. 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.
Schwannomatosis
The third major group that was informally associated with neurofibromatosis in the past. Schwannomatosis is a rare condition characterized by the formation of multiple nerve sheath tumors (called schwannomas) throughout the body. Schwannomas on both the hearing and balance nerves point to NF2-related schwannomatosis; a schwannoma on one side occurs rarely in the other forms and does not by itself rule the diagnosis out. The primary symptom is chronic pain, which can be debilitating. Surgical excision of painful schwannomas can provide significant symptom relief. See our guide on managing schwannomatosis for more on monitoring and treatment options.
Facial Manifestations of NF
When neurofibromatosis involves the face, it can affect virtually any structure — skin, soft tissue, bone, nerves, and blood vessels. Common facial manifestations include:
- Plexiform neurofibromas — large, diffuse tumors that grow along nerve sheaths, often distorting facial contour
- Orbital involvement — tumors affecting the eye socket, potentially impacting vision and eye position
- Eyelid and brow ptosis — drooping caused by tumor mass or nerve infiltration
- Soft tissue excess — redundant skin and subcutaneous tissue from long-standing tumor growth
- Facial asymmetry — progressive distortion of facial proportions
- Facial nerve involvement — tumors that directly affect facial nerve function, causing paralysis or weakness
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.
What to Expect from Neurofibromatosis Surgery
A plain-language guide to surgical treatment for neurofibromatosis — written for patients and families deciding whether surgery is the right next step, and what to expect if it is.
- What NF1, NF2-related schwannomatosis (formerly NF2), and schwannomatosis each involve
- When surgery helps, when it doesn't, and what success realistically means
- How cutaneous and plexiform tumors are approached differently
- Electrodesiccation, surgical excision, and staged reconstruction compared
- What recovery and recurrence actually look like
- Questions to ask any surgeon before proceeding
Surgical Approaches
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:
- Staged tumor resection — removing tumor tissue in carefully planned stages to minimize risk and optimize outcomes; see our overview of neurofibroma removal, treatment, and potential complications for what to expect
- Nerve-sparing technique — meticulous dissection to preserve functioning nerves whenever possible
- Soft tissue reconstruction — reshaping and repositioning remaining tissue to restore facial contour and symmetry
- Orbital reconstruction — protecting the eye and restoring the eye socket when orbital structures are involved
- Facial reanimation — restoring movement if facial paralysis has resulted from tumor growth or prior surgery
- Electrodesiccation — a specialized technique for patients who develop hundreds of superficial skin neurofibromas; these tumors are individually treated using electrical current, which can efficiently address large numbers of small tumors across the body and face in a single session
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 — see our guide on managing NF symptoms and effective treatment options for a broader look beyond surgery.
Real Lives, Real Transformations
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.
A Journey Seen on National Television
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.
From Isolation to Advocacy
After years of avoiding social situations due to visible changes in facial appearance, this patient underwent staged tumor resection with Dr. Panossian and became an advocate for the NF community.
Frequently Asked Questions
Who Treats Neurofibromatosis?
Dr. Andre Panossian, based in Pasadena, CA, is a skilled medical professional specializing in the treatment of Neurofibromatosis. Patients often need care from a multidisciplinary team that may include geneticists, neurologists, and oncologists. Dr. Panossian’s approach is patient-centered, focusing on both symptom management and long-term well-being. Patients often ask whether diet plays a role in managing NF — read our detailed look at NF nutrition myths and what actually helps for a closer examination of this common question.
How Common Is Neurofibromatosis?
Neurofibromatosis is relatively rare but not exceedingly so. Neurofibromatosis type 1, the most common form, affects approximately 1 in 2,000 to 3,000 people at birth. Early diagnosis and treatment are crucial for better outcomes.
How Is Neurofibromatosis Diagnosed?
Diagnosis is generally based on clinical evaluation, family history, and specific diagnostic criteria. Dr. Panossian may recommend imaging tests like MRI scans to assess the extent of nerve tissue involvement. Genetic testing can also confirm the diagnosis and guide treatment options — see our overview of how ICD-10 coding applies to an NF diagnosis for patients navigating records and insurance.
What Is The Main Cause Of Neurofibromatosis?
The primary cause of Neurofibromatosis is genetic mutations. These mutations are often inherited but can also occur spontaneously. The mutated genes are responsible for regulating cell growth in the nervous system, and their malfunction leads to the formation of tumors — see our closer look at NF's genetic causes and inheritance patterns for more detail.
What Is The Life Expectancy Of Someone With Neurofibromatosis?
Life expectancy can vary widely depending on the type and severity of Neurofibromatosis. While some individuals may experience a near-normal lifespan, others may face complications that could reduce life expectancy. Early diagnosis and proactive management are key to improving quality of life and longevity.
Community Resources
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:
Children's Tumor Foundation
The leading nonprofit dedicated to NF research and patient support. Offers educational resources, clinical trials information, patient registries, and community events.
NF Network
A comprehensive resource for NF patients and families, providing information about treatment centers, support groups, financial assistance, and advocacy opportunities.
Mending Kids
Dr. Panossian's partner organization for humanitarian surgical missions — providing reconstructive surgery to children with craniofacial conditions, including NF, in underserved communities worldwide.
NF Midwest
Regional support organization offering patient education, family resources, and connections to NF specialists for comprehensive management across multiple medical disciplines.
There is Always Something We Can Do
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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