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Neurofibromatosis (NF1, NF2 & Schwannomatosis)

Neurofibromatosis (NF) is a group of genetic conditions that cause tumors to grow on nerves. Most of these tumors are not cancer. There is no cure yet, but regular checks at a specialty clinic, newer medicines for some tumors, surgery, hearing support and help at school let people with NF manage the condition across their lives.

A lump that changes needs a doctor promptly. Most NF tumors are not cancer, but some can become cancerous (NINDS). The most important one, malignant peripheral nerve sheath tumor (MPNST), grows quickly and can spread; when it grows it can cause pain, weakness and a growing lump under the skin (National Cancer Institute). NCI experts advise people with NF to see their doctor as soon as possible if they notice any lumps, rapid growths or pain — and not to dismiss a new pain just because they already live with pain (National Cancer Institute). Experts also list severe pain that keeps getting worse, a change in a tumor’s size, new unexplained nerve symptoms, and sweating with a pounding heartbeat (a possible sign of a tumor called pheochromocytoma) as signs that need attention (Stewart et al., ACMG, 2018).

Get an urgent appointment for headaches that keep coming back, don’t go away or are getting worse; for feeling or being sick again and again; or for blurred vision or vision loss (NHS).

Call 911 for a first-ever seizure, or for new weakness or numbness in the face or down one side of the body — the NHS lists these as emergencies in NF2 (NHS). If you are thinking about suicide or are in emotional crisis, call or text 988 (988 Suicide & Crisis Lifeline). Never wait for an acupuncture, massage or chiropractic appointment for any of these.

Be wary of “cures”. There is no cure for NF1 or schwannomatosis, but treatments can help manage symptoms and complications (NINDS). The FDA warns that products claiming to treat a condition without being proven safe and effective waste money, can delay proper diagnosis and treatment, and can cause serious or even fatal injuries (FDA). Tell your NF team about every supplement — even vitamin E can matter with one of the NF medicines (FDA label, via DailyMed).

What is neurofibromatosis?

Neurofibromatosis (NF) is not one disorder but a group of genetic conditions in which tumors develop on the brain, the spinal cord and the nerves that carry signals between them and the rest of the body. Most of the tumors are not cancer (benign) (NINDS). NF mainly affects how nerve cells form and grow (MedlinePlus). The group includes:

How NF is passed on

About half of people with NF inherit it from a parent; in the other half the gene change happens for the first time (a new, or “spontaneous,” change) (NINDS). A person with NF1 or NF2 has a 1 in 2 (50%) chance of passing the altered gene to each child (NHS, NHS). NF1 is caused by changes in the NF1 gene, whose protein, neurofibromin, normally keeps cells from growing too fast; tumors form when a second change happens in the other copy of the gene during life (MedlinePlus Genetics). NF2-related schwannomatosis works the same way with the NF2 gene and its protein, merlin (MedlinePlus Genetics).

Schwannomatosis is different: most cases occur in people with no family history, and only 15 to 25 percent run in families. Changes in the SMARCB1 or LZTR1 genes are known causes, and some people who carry an altered gene never develop tumors (MedlinePlus Genetics). A geneticist can explain what a diagnosis means and the chance of passing it on to children (NHS).

NF1: signs to know

The signs vary widely from person to person (MedlinePlus Genetics), and symptoms are often mild, though some people have symptoms that cause problems (NHS).

Doctors diagnose NF1 when a person has two or more features such as six or more café-au-lait spots, freckling, two or more neurofibromas or one plexiform neurofibroma, Lisch nodules, an optic pathway glioma, bowing of the shin bone, an NF1 gene change on testing, or a parent with NF1. A child with only one sign and no family history is usually watched for others (NINDS). The criteria were revised in 2021 to include new clinical features and genetic testing, and to tell NF1 apart from a look-alike condition called Legius syndrome (Legius et al., 2021).

NF2-related schwannomatosis: signs to know

Signs usually appear between the teenage years and age 30 (NINDS). The hallmark is a slow-growing, benign tumor on the nerve for hearing and balance (a vestibular schwannoma); in most people these develop in both ears by age 30. The most frequent early symptoms are hearing loss, ringing in the ears (tinnitus) and balance problems (MedlinePlus Genetics). Tumors can also grow on the coverings of the brain and spinal cord (meningiomas) and inside the spinal cord (ependymomas) (NINDS). Children may first show eye problems such as a squint or childhood cataracts, skin lumps, or difficulty lifting the feet (foot drop). Tumors on the spinal cord or brain coverings don’t always cause symptoms, but can cause headaches, nausea, seizures, vision loss, facial weakness, or weakness, numbness or tingling in the hands and feet (NHS); see our Epilepsy & Seizures guide. See our Balance Problems and Ear Problems guides for related symptoms.

Other schwannomatosis

Signs usually appear in early adulthood. The most common symptom is long-lasting pain, which can affect any part of the body — sometimes where no tumor has been found — and can be hard to manage. Numbness, weakness, tingling and headaches can also occur, and life expectancy is normal (MedlinePlus Genetics). Schwannomas are often benign but in rare cases can become cancer; a slow-growing one may simply be checked often, while one that grows faster or causes problems may be removed (National Cancer Institute).

NF1 complications to watch

  • Plexiform neurofibromas occur in about half of people with NF1 and involve several nerves and the tissues around them (NINDS). They are not cancer but often grow through childhood and can cause disfigurement, pain and problems with function; surgery isn’t an option for most children because of where they grow (National Cancer Institute). Medicines now exist for some of them (see Conventional medicine).
  • MPNST, a fast-growing cancer of the nerve sheath: about 8 to 13 percent of people with NF1 develop it in their lifetime, usually as young or middle-aged adults (National Cancer Institute).
  • Optic pathway glioma, a tumor on the nerves for vision, in about 15 to 20 percent of children with NF1; children aged 1 to 6 are at greatest risk. Most cause no symptoms, but some affect vision and need chemotherapy (NINDS).
  • Learning differences and ADHD occur in more than half of people with NF1, and difficulty with social relationships is common (NINDS). Most people with NF1 have normal intelligence (MedlinePlus Genetics). See our ADD & ADHD and Developmental Disabilities guides.
  • Bones: scoliosis (a sideways curve of the spine) is more common and more aggressive in NF1, and some children are born with bowing of the shin bones or changes in the eye socket (NINDS). Our Scoliosis guide is planned.
  • Blood vessels and blood pressure: NF1 can bring high blood pressure, narrowing of the arteries to the kidneys or brain, and heart defects present at birth (NINDS). See our High & Low Blood Pressure guide.
  • Other cancers: people with NF1 have a higher risk of brain tumors and leukemia (MedlinePlus Genetics), breast cancer before age 50 in women, gastrointestinal stromal tumors and pheochromocytoma (NINDS). A study funded in part by NCI, of about 1,600 people with NF1 found they were almost 10 times more likely than the general population to develop any cancer (National Cancer Institute). See our Cancer guide; a Tumors guide is planned.
  • Feelings: large tumors or tumors on the face can lead to depression, anxiety and low self-esteem (NHS).
  • Pregnancy can bring narrowed arteries, high blood pressure and more or larger tumors, so talk with your care team before or as soon as you are pregnant (NHS).

Outlook. Most people with NF1 have an average life expectancy (NINDS), but on average NF1 is linked to an 8 to 15 year shorter life, mainly because of cancers and blood-vessel disease (Stewart et al., 2018) — which is why regular checks and quick attention to new symptoms matter. NF2 is lifelong, usually gets worse over time and can affect life expectancy, depending on each person’s symptoms (NHS).

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) Yearly checks at a specialty NF clinic (skin, eyes, blood pressure, spine, growth, learning); MRI when needed; FDA-approved MEK inhibitor medicines (selumetinib, mirdametinib) for symptomatic plexiform neurofibromas that can’t be fully removed; surgery or radiation for tumors causing problems; hearing aids and implants; school testing and an IEP. Brain MRI: about $293–$1,980 self-pay through one marketplace; genetic panels about $249–$299 self-pay; full hearing test about $100–$300. MEK inhibitors and surgery: cost estimate being researched. NF has no cure, but most people need no long treatment for any one symptom. Regular checks catch problems early, when more treatment options are available.
Chiropractic No role as a treatment for NF. Spinal tumors, aggressive scoliosis and fragile blood vessels make spinal manipulation a real safety concern. Not applicable as NF treatment. Typical self-pay visits for other problems: about $55–$100. MBHA caution: no spinal or neck manipulation without your NF doctor’s clearance and up-to-date imaging. New back pain or weakness goes to the doctor first.
Acupuncture No studies show acupuncture treats NF or its tumors, and we found little research on it for NF pain; mind-body training has been tested. About $90–$185 per follow-up visit self-pay; first visits about $125–$230. A reported case of massive bleeding after acupuncture in a woman with NF1 blood-vessel changes. MBHA caution: never needle into or around neurofibromas.
Herbal medicine No herb or supplement has been shown to shrink NF tumors. Curcumin has only an uncontrolled report in a handful of people. Not applicable. Some supplements interact with NF medicines (vitamin E with selumetinib capsules). Tell your NF team about everything you take. We don’t list doses.
Massage therapy Gentle massage for comfort and stress, away from tumors, alongside — not instead of — medical care. One national chain’s memberships run about $70–$90 a month for one session. We found little research on massage in NF. MBHA caution: no deep pressure over neurofibromas or known tumors, and report any lump that has changed.
MBHA Wellness Coach Mind-body resiliency skills (tested in a large trial in adults with NF), keeping a symptom and lump log, organizing yearly checks, school advocacy, hearing-loss adjustments and connecting with NF support groups. Cost estimate being researched. Parent Centers and many NF support organizations are free. A large remote trial found lasting gains in quality of life from mind-body skills training. Supports — never replaces — your NF clinic.

Approach 1 of 6

Conventional medicine (AMA)

There is no cure for NF1 or schwannomatosis, but treatments can manage symptoms and complications. Many people with NF never need long treatment for any single symptom, but everyone with NF should be seen regularly by a specialist, even without symptoms — ideally at a specialty clinic, with a first screening and yearly follow-up (more often if the condition is severe) (NINDS). We name treatments but never doses.

1. A specialty clinic and yearly checks

Your team may include a neurologist, an eye specialist and a skin specialist, and children are also followed by a pediatrician (NHS). NCI experts recommend care at a specialty NF1 clinic whenever possible, because not every doctor knows the cancer risks well; yearly specialist checks look at blood pressure, skin, nervous system, eyes, spine and limbs (National Cancer Institute). The American Academy of Pediatrics publishes health supervision guidance for children with NF1, because most features emerge with age and need periodic monitoring (Miller et al., Pediatrics, 2019); the ACMG publishes a care resource for adults (Stewart et al., 2018). See “Signs and checks by age” below.

Tests can include eye exams, hearing tests, X-rays, CT or MRI scans to find tumors and bone changes, and genetic testing when the diagnosis is unclear or during pregnancy (NINDS).

2. Medicines for plexiform neurofibromas

Two medicines called MEK inhibitors are FDA-approved for NF1. They are not for every person with NF1 — only for plexiform neurofibromas that cause symptoms and can’t be fully removed.

Monitoring and side effects. Both labels call for eye exams before and during treatment and heart checks (ejection fraction, measured by echocardiogram for mirdametinib), and both warn about rash and possible harm to an unborn baby (Koselugo label, Gomekli label). Common side effects of selumetinib in children include vomiting, diarrhea, dry skin and an acne-like rash; selumetinib capsules contain vitamin E, and extra vitamin E supplements may raise the risk of bleeding (Koselugo label). There is no approved drug that treats schwannomatosis directly; medicines can help with pain, headache, seizures and other symptoms (NINDS). For NF2, the NHS lists medicine that can stop tumors growing and sometimes improve hearing (NHS).

3. Surgery and radiation

  • Surgeons may remove tumors that are growing, causing symptoms or discomfort, or raising concern about cancer. Experts don’t fully agree on when surgery is best. Scoliosis can be corrected with surgery or stabilized with a brace (NINDS).
  • If symptoms aren’t causing problems, your doctor may suggest waiting and watching (NHS). Children with NF1 and an optic pathway glioma may simply be watched until signs appear or the tumor grows; radiation may be delayed in NF1 because of a higher risk of a second cancer (National Cancer Institute).
  • MPNST is treated with surgery, radiation and sometimes chemotherapy, and working with a team of experts as soon as possible matters (National Cancer Institute). NCI experts advise people with NF1 who develop cancer to discuss all options with a specialist and, if possible, get a second opinion (National Cancer Institute).
  • Vestibular schwannomas can be removed, treated with focused radiation, or watched with MRI scans; surgery can sometimes worsen hearing, balance or facial nerve problems (NIDCD). Most people with NF2 need surgery at some point (NHS).

4. Hearing and balance support

Hearing aids, cochlear implants or auditory brainstem implants may improve hearing loss in NF2-related schwannomatosis, and mobility devices and glasses help with movement and vision problems (NINDS). Over time some people need equipment such as a wheelchair, and ongoing support from physiotherapists and hearing specialists (NHS). In a UK NF2 clinic, 79 percent of the 19 patients judged at risk of falls improved with a personalized vestibular (balance) rehabilitation program, and the gains lasted 9 months (Emmanouil et al., 2019).

5. Learning and school

Children with NF1 should be evaluated by a team that knows NF1, and formal neuropsychological testing helps build an individualized education plan (NINDS). Under the federal IDEA law, eligible children with disabilities aged 3 to 21 have the right to a free appropriate public education, and infants and toddlers can get early intervention (ECTA Center).

6. Clinical trials

Research is testing new medicines for NF tumors, including treatments for schwannomas (NINDS). Ask your NF clinic whether a trial might fit.

What it costs

  • Brain MRI: one marketplace lists noncontrast MRI at $293 to $1,980 (average $612) and with-and-without-contrast MRI at $406 to $2,200; hospital cash prices can be much higher (The Pricer).
  • Genetic testing: from under $100 to more than $2,000 depending on the test; common self-pay panels run about $249 to $299, and genetic counseling may add up to about $250 per visit (The Pricer).
  • Hearing tests: a full self-pay hearing evaluation runs about $100 to $300 (The Pricer). Medicare covers diagnostic hearing and balance exams when your doctor orders them (Medicare.gov) but doesn’t cover hearing aids or exams for fitting them (Medicare.gov).
  • Cochlear implant: about $39,475 to $98,195 for the full treatment episode before insurance, averaging $51,072; insured patients may owe far less (The Pricer).
  • MEK inhibitor medicines, surgery and radiation: cost estimate being researched.

What to expect

NF is lifelong and affects everyone differently. Yearly checks mean changes can be picked up early and are more likely to be treated successfully (NHS), and for cancers the reason for annual checks is to find them early, when more treatment options are available (National Cancer Institute).

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

Chiropractic care has no role as a treatment for NF itself; we found only a single case report on neck pain (below). The larger issue is safety, because NF can affect the spine, the nerves and the blood vessels.

MBHA caution — no spinal or neck manipulation without clearance from your NF doctor. In NF1, neurofibromas can grow on nerves near the spinal cord (MedlinePlus Genetics), scoliosis is more common and more aggressive, and blood vessels can be abnormal (NINDS). In NF2-related schwannomatosis, tumors can grow on the coverings of the spinal cord and inside it (NINDS). A 1980 case report described an injured neck artery (a traumatic pseudoaneurysm) in a person with NF as a complication of chiropractic manipulation (Lennington et al., 1980). This caution is MBHA’s own, based on these facts; we found no guideline on chiropractic in NF.

  • Even in the general population, spinal manipulation often causes short-lived soreness, stiffness or headache; serious problems such as spinal or nerve injury or stroke from a torn neck artery are very rare. The chance of a serious side effect may be greater in people whose health problems raise their risk of injury, so share your diagnosis and medicines with any practitioner (NCCIH).
  • One chiropractic case report described a 21-year-old woman with NF1 whose neck and upper back pain and headaches eased with gentle flexion-distraction, soft-tissue work, workplace ergonomics and home exercises (Mignelli et al., 2021). A single case can’t show that this works or is safe for others.
  • New back pain, weakness, numbness, or changes in walking or bladder control are reasons to call your NF doctor first; MPNST can cause pain and weakness (National Cancer Institute). For general back care, see our Back Pain guide; a Scoliosis guide is planned.

Cost: for other problems, self-pay follow-up visits typically run about $55 to $100 and first visits about $90 to $200 (The Pricer).

Find a chiropractor in our directory

Approach 3 of 6

Acupuncture

We found very little research on acupuncture in NF, and none showing that it treats NF or its tumors. Pain is a real problem for many people with NF — especially schwannomatosis (MedlinePlus Genetics) — but the treatment tested in a large trial for NF pain was mind-body skills training, not acupuncture (see the Wellness Coach section).

What the research says

  • A 2023 case report described a 59-year-old woman with NF1 who developed a massive bleed (a hematoma about 24 cm across) over her shoulder blade after acupuncture, from abnormal blood vessels linked to NF1. The authors warn that even minor injuries such as those from acupuncture can cause severe bleeding in people with NF1-related vessel malformations (Wei et al., 2023).
  • A 2014 case report from a Korean medicine clinic described a teenager with plexiform neurofibromas treated for four years with bee venom injected at the tumor borders and an intravenous ginseng preparation (“pharmacopuncture”); the authors reported that tumor growth almost stopped (Lim et al., 2014). A single uncontrolled case is not evidence, and injecting substances near tumors is not among the FDA-approved NF treatments described in the Conventional medicine section.

Safety

Relatively few complications from acupuncture have been reported, but nonsterile needles and improper treatment have caused infections, punctured organs and injury to the central nervous system; the FDA requires needles to be sterile and for single use (NCCIH). MBHA caution: if you choose acupuncture for general wellbeing, tell the practitioner you have NF, avoid needling into or right around neurofibromas or known tumors, and ask your NF doctor first if you have known blood-vessel problems.

Cost: self-pay follow-up visits run about $90 to $185 and first private visits about $125 to $230; community clinics can charge about $50 to $90 (The Pricer).

Find an acupuncturist in our directory

Approach 4 of 6

Herbal medicine

No herb, vitamin or supplement has been shown to shrink neurofibromas or schwannomas or to prevent NF complications. We don’t list doses.

What the research says

  • Curcumin (from turmeric): an Italian report followed 11 people with NF1 on different diets. The three who ate a Mediterranean diet with a curcumin supplement had fewer and smaller skin neurofibromas after six months; diet alone or curcumin with a Western diet showed no clear effect. The authors themselves say the finding needs to be confirmed in a larger group (Esposito et al., Nutrients, 2017). Without a control group or blinding, this can’t show that curcumin works.
  • NCCIH says there isn’t enough evidence to conclude that turmeric or curcumin helps any health condition. Liver damage has been reported with “high-absorption” curcumin products, and turmeric supplements may be unsafe in pregnancy (NCCIH).

Safety first

  • Supplements and NF medicines can clash. Selumetinib capsules already contain vitamin E, and extra vitamin E may raise the risk of bleeding, especially with blood thinners; the granule form should not be mixed with grapefruit or Seville orange (Koselugo label, via DailyMed). If you take any medicine, talk with your health care provider before using any herbal product, because some herbs and medicines interact in harmful ways (NCCIH).
  • Dietary supplements are not approved by the FDA before they are sold (NCCIH), and products that claim to treat a disease without proof can delay real treatment (FDA).

Approach 5 of 6

Massage therapy

Massage may help some people relax and cope with stress, but we found little research on massage for people with NF, and none showing it changes the condition.

MBHA caution — work around tumors, not on them. Neurofibromas can be painful or itchy (NHS), plexiform neurofibromas involve nerves and surrounding tissue (NINDS), and NF1 can involve fragile, abnormal blood vessels in which even minor injury has caused severe bleeding (Wei et al., 2023). Ask for light pressure, no deep or vigorous work over neurofibromas or known tumors, and tell your therapist about NF before the session. This advice is MBHA’s own; we found no guideline on massage in NF.

  • Massage appears to have few risks, but rare serious side effects such as a blood clot, nerve injury or bone fracture have been reported, some with vigorous or deep tissue massage. Therapists may need to use less pressure in sensitive areas for people with cancer (NCCIH).
  • If you or your massage therapist notice a lump that has grown or become painful, see your NF doctor promptly rather than massaging it (National Cancer Institute).
  • After spine or tumor surgery, ask your surgeon when massage is safe.

Cost: at one national chain, memberships run about $70 to $90 a month for one 60-minute session (The Pricer).

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

Living with NF means regular appointments, uncertainty about tumors, and, for many, pain, hearing loss or visible differences. An MBHA Wellness Coach can help with the everyday side of life with NF — alongside, never instead of, your NF clinic.

Mind-body resiliency skills

  • In a remote randomized trial of 228 adults with NF1, NF2 or schwannomatosis from around the world, eight group video sessions of the Relaxation Response Resiliency Program for NF (3RP-NF) improved physical and psychological quality of life. A health-education program helped at first, but only the mind-body group kept its gains at 12 months (Vranceanu et al., JAMA Netw Open, 2023).
  • In the same trial, people in the mind-body program reported that pain got in the way of daily life less, an improvement that lasted a year and came through better coping. Pain intensity itself did not change, and the difference between the two programs was not clear-cut at every time point (Hooker et al., 2024).
  • A 2021 review of 10 articles found NF-adapted mind-body programs were associated with better quality of life, including for people with NF2 who are deaf and for young people with NF (Wei et al., 2021).

Staying on top of checks and changes

  • A coach can help you keep a calendar of yearly checks — eye exams, blood pressure, and breast screening for women (see “Signs and checks by age”) — and a simple log or photos of lumps, pain and new symptoms to bring to visits. NCI experts warn that people who live with pain may ignore a new pain; changes should be seen early (National Cancer Institute).
  • Tell the doctor about new symptoms or changes in old ones (NHS).

Feelings, self-image and support

School and growing up

Living with hearing loss

For people with NF2-related schwannomatosis, hearing loss is often the first symptom and can get worse over time (NINDS, NHS). A coach can help you plan ahead — for example, practicing communication options and arranging hearing tests — while your audiologist handles devices and implants.

Another approach

Signs and checks by age

This summary draws on NIH and NHS pages and on NCI. Your NF clinic may advise a different schedule, and checks may be needed more often if there are problems.

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