Neurofibromatosis Treatment in New York
Our New York neurofibromatosis specialists manage your lifelong inherited condition, performing surgery only when necessary.
What is neurofibromatosis ?
Neurofibromatosis is an inherited condition, not just a single tumor. It requires lifelong management instead of a one-time treatment. A change in one gene causes benign tumors to grow along nerves. Their location and behavior can vary from person to person.
This gene change removes a brake on the cells that support nerves. As a result, benign tumors can form wherever nerves are present. This is why the same diagnosis can look different for each person and can change over time. Accurate diagnosis is what makes treatment effective.
See how it is treated
Neurofibromatosis symptoms
It often shows up in childhood, and the signs are wide-ranging. These are the signs families and doctors watch for.
Soft lumps under the skin along nerves
Soft lumps that follow the line of a nerve, often painless and sometimes tender to the touch.
Skin changes
Flat, light-brown patches on the skin or freckling in the armpits and groin are often the first signs in a child.
Hearing loss in both ears and unsteadiness
Hearing loss and balance trouble affecting both sides point specifically to type 2 rather than type 1.
Pain or weakness caused by a tumor pressing on a nerve
Pain, numbness, or weakness from a tumor pressing on a nerve, the spine, or the spinal cord deserves prompt medical evaluation.
What causes tumors to grow on nerves ?
The change originates from a single gene. The specific gene involved and the nature of the change determine the type.
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01
An inherited change in the NF1 gene
This causes type 1, the most common form, and is usually passed in families.
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02
An inherited change in the NF2 gene
This causes type 2, marked by the nerves responsible for hearing on both sides.
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03
A new, spontaneous gene change
In about half of cases, there is no family history; the change occurred spontaneously.
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04
Schwannomatosis
This is a related condition that causes multiple nerve tumors in a different pattern.
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05
Changing tumors
A growing, painful, hardened, or recurrent tumor needs dedicated review rather than routine observation.
How is neurofibromatosis diagnosed?
History and a skin-and-nerve exam
We review your family history and examine the skin, the nerves, the eyes, and the spine, since the signs are often visible.
Imaging matched to your type, plus genetic testing
Imaging focuses on your symptoms and surveillance schedule. Scanning everything at once isn't effective. Whole body screenings without a clear reason often lead to findings that do not help.
One review across specialties
Neurosurgeons and orthopaedic spine surgeons compare brain, nerve, spine, hearing nerve, scoliosis, and prior surgery findings together.
Your plan, in plain terms
Our neurofibromatosis doctors explain the type and monitoring plan. They also discuss which NF specialist will join and what changes should prompt you to reach out.
Neurofibromatosis treatment, from conservative care to surgery
Neurofibromatosis treatment centers on lifelong monitoring. Surgery helps selected tumors that cause pain, pressure, hearing risk, or loss of function.
Lifelong monitoring and medical care
Care follows the NF type
- A surveillance plan matched to NF1, type 2, or schwannomatosis, including hearing and vision testing when relevant.
- Genetic counseling for adults, parents, caregivers, and relatives who may need testing.
- Medical therapy for certain NF1 plexiform tumors, coordinated with oncology.
- Coordinated care with neurology, ENT, ophthalmology, and oncology.
Surgery, for specific problems
Our neurofibromatosis surgeons operate only when a tumor is causing harm
- Removal of a tumor causing pain, pressure, or loss of function.
- Spinal decompression and stabilization for tumors involving the spine or spinal cord.
- Surgery or radiosurgery for type 2 tumors of the hearing nerve, aiming to protect hearing.
- Revision surgery for tumors that recur, grow around nerves, or change after previous treatment.
When it cannot wait: a tumor that is growing quickly, becoming painful, or hardening needs same-day review, so call 914-303-6548. For sudden weakness or numbness, sudden hearing loss, or new bowel or bladder loss, call 911 or go to the nearest emergency department right away.
Doctors who treat Neurofibromatosis in New York
Our neurofibromatosis doctors bring neurosurgery and orthopaedic spine care together, with paediatric and academic-level training, and review every case as one team in the New York metro area.
