Overview
Benign schwannoma, also known as neurilemmoma or neurinoma, is a benign nerve sheath tumor that arises from Schwann cells, which are the cells responsible for producing the myelin sheath that insulates peripheral nerves. These tumors are typically slow-growing, well-encapsulated, and can develop along any peripheral nerve, cranial nerve, or spinal nerve root. The most commonly affected sites include the head and neck region, the flexor surfaces of the upper and lower extremities, and the posterior mediastinum. When arising from cranial nerves, the vestibular nerve (cranial nerve VIII) is most frequently involved, giving rise to vestibular schwannoma (acoustic neuroma), though these are classified separately. Schwannomas occurring in peripheral soft tissues are classified under ICD-10 code D36.1. Key symptoms depend on the tumor's location and size. Many benign schwannomas are asymptomatic and discovered incidentally. When symptomatic, patients may experience a palpable, slowly enlarging mass, localized pain or tenderness, tingling or numbness in the distribution of the affected nerve, and occasionally neurological deficits such as weakness if the tumor compresses adjacent nerve fibers. Spinal schwannomas may cause radiculopathy or myelopathy. The vast majority of schwannomas are solitary and sporadic, though multiple schwannomas can occur in the context of genetic syndromes such as neurofibromatosis type 2 (NF2) or schwannomatosis (now termed SMARCB1- or LZTR1-related schwannomatosis). The primary treatment for symptomatic benign schwannomas is surgical excision, which is usually curative with low recurrence rates due to the tumor's encapsulated nature. Because these tumors typically displace rather than infiltrate nerve fibers, nerve-sparing surgery is often possible. For asymptomatic or incidentally discovered tumors, a watch-and-wait approach with periodic imaging may be appropriate. Malignant transformation of solitary benign schwannomas is exceedingly rare. Prognosis is generally excellent, with most patients experiencing complete resolution of symptoms following surgical removal.
Also known as:
Clinical phenotype terms— hover any for plain English:
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
9 eventsXuanwu Hospital, Beijing — NA
Huazhong University of Science and Technology
University Hospital Muenster
IRCCS Azienda Ospedaliero-Universitaria di Bologna
Charles University, Czech Republic — NA
Jona Hattangadi-Gluth
Peking Union Medical College Hospital
Seoul National University Hospital
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Benign schwannoma.
5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Benign schwannoma.
Community
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Start the conversation →Latest news about Benign schwannoma
Disease timeline:
New recruiting trial: Assessment of Patient Experience With Auto-Captioning Glasses in NF2-Related-Schwannomatosis
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Neurofibromatosis (NF) Registry Portal
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Natural History Study of Patients With Neurofibromatosis Type 2
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Establishing Prospective Mediastinal Tumor Database of PUMCH
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Evaluating Pre-Treatment Vestibular Physical Therapy Rehab for Patients With Vestibular Schwannomas
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Longitudinal Prospective Study of Neurocognition & Neuroimaging in Primary BT Patients
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Radiosurgery Induced Ototoxicity in Patients Treated for a Vestibular Schwannoma
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Intraoperative EABR for Decision Making
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Multicenter Trial on Surgical Outcome and Quality of Life in Juxta-medullary Tumors
A new clinical trial is recruiting patients for Benign schwannoma
New recruiting trial: Early Rehabilitation Using Head Impulse Test for Acute Vestibular Deficit
A new clinical trial is recruiting patients for Benign schwannoma
Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Common questions about Benign schwannoma
What is Benign schwannoma?
Benign schwannoma, also known as neurilemmoma or neurinoma, is a benign nerve sheath tumor that arises from Schwann cells, which are the cells responsible for producing the myelin sheath that insulates peripheral nerves. These tumors are typically slow-growing, well-encapsulated, and can develop along any peripheral nerve, cranial nerve, or spinal nerve root. The most commonly affected sites include the head and neck region, the flexor surfaces of the upper and lower extremities, and the posterior mediastinum. When arising from cranial nerves, the vestibular nerve (cranial nerve VIII) is most
How is Benign schwannoma inherited?
Benign schwannoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Benign schwannoma typically begin?
Typical onset of Benign schwannoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Benign schwannoma?
Yes — 5 recruiting clinical trials are currently listed for Benign schwannoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Benign schwannoma?
25 specialists and care centers treating Benign schwannoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.