Benign schwannoma

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:252164D36.1
Who is this for?
Show terms as
5Active trials45Specialists8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

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:

Vestibular schwannomaHP:0009588Peripheral schwannomaHP:0009593Abnormal temporal bone morphologyHP:0009911Abnormality of peripheral nervous system electrophysiologyHP:0030177SchwannomaHP:0100008Scleral schwannomaHP:0100011AllodyniaHP:0012533Abnormal parotid gland morphologyHP:0000197Abnormality of the breastHP:0000769Abnormality of the adrenal glandsHP:0000834Abnormality of the larynxHP:0001600Morphological central nervous system abnormalityHP:0002011Abnormal esophagus morphologyHP:0002031Acute episodes of neuropathic symptomsHP:0003489
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

9 events
Mar 2026Oliceridine Versus Sufentanil for Postoperative Nausea in Cerebellopontine Angle Surgery

Xuanwu Hospital, Beijing — NA

TrialNOT YET RECRUITING
Jul 2025Multicenter Observational Study of Multimodal AI for Upper GI Mesenchymal Tumor Diagnosis

Huazhong University of Science and Technology

TrialRECRUITING
May 2025Multicenter Trial on Surgical Outcome and Quality of Life in Juxta-medullary Tumors

University Hospital Muenster

TrialRECRUITING
Jan 2024Quality of Life and Decisional Regret in Patients Affected by Acoustic Neuroma

IRCCS Azienda Ospedaliero-Universitaria di Bologna

TrialRECRUITING
Jun 2022Evaluation of the CONVIVO System

Dartmouth-Hitchcock Medical Center — NA

TrialRECRUITING
Jan 2020The Use of Virtual Reality in Rehabilitation in Patients After Vestibular Schwannoma Surgery.

Charles University, Czech Republic — NA

TrialRECRUITING
Jan 2015Longitudinal Prospective Study of Neurocognition & Neuroimaging in Primary BT Patients

Jona Hattangadi-Gluth

TrialRECRUITING
Jan 2012Establishing Prospective Mediastinal Tumor Database of PUMCH

Peking Union Medical College Hospital

TrialRECRUITING
Jan 2001SeOuL cOhort of Brain Tumor MONitoring Study (SOLOMON)

Seoul National University Hospital

TrialRECRUITING

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 →

Clinical Trials

5 recruitingView all trials with filters →
N/A1 trial
Evaluation of the CONVIVO System
N/A
Actively Recruiting
PI: Linton T Evans, MD (Dartmouth-Hitchcock Medical Center) · Sites: Lebanon, New Hampshire · Age: 1899 yrs
Other4 trials
SeOuL cOhort of Brain Tumor MONitoring Study (SOLOMON)
Actively Recruiting
PI: Chul-Kee Park, MD PhD (Seoul National University Hospital) · Sites: Seoul · Age: 1899 yrs
Establishing Prospective Mediastinal Tumor Database of PUMCH
Actively Recruiting
PI: Shanqing Li, Prof. (Peking Union Medical College Hospital) · Sites: Beijing, Beijing Municipality
Longitudinal Prospective Study of Neurocognition & Neuroimaging in Primary BT Patients
Actively Recruiting
· Sites: San Diego, California · Age: 1899 yrs
Multicenter Observational Study of Multimodal AI for Upper GI Mesenchymal Tumor Diagnosis
Actively Recruiting
· Sites: Wuhan, Hubei · Age: 1899 yrs

Specialists

Showing 25 of 45View all specialists →
HK
Hisanori Kani
Specialist
1 Benign schwannoma publication
YZ
Yahua Zhu
Specialist
1 Benign schwannoma publication
RM
Ravi Mallina
Specialist
1 Benign schwannoma publication
AR
Andrew Refalo
Specialist
1 Benign schwannoma publication
MY
Masakatsu Yamashita
Specialist
1 Benign schwannoma publication
LD
Liliana Duarte
CANOGA PARK, CA
Specialist
1 Benign schwannoma publication
JG
Jun Geng
Specialist
1 Benign schwannoma publication
AS
Andreia J Santos
Specialist
1 Benign schwannoma publication
VR
Vincent Matthew Roble
Specialist
1 Benign schwannoma publication
MU
Motoi Ugajin
Specialist
1 Benign schwannoma publication
AS
Al Marion Santos
Specialist
1 Benign schwannoma publication
RY
Ralph Victor Yap
Specialist
1 Benign schwannoma publication
FZ
Fu Zhao
BROOKLYN, NY
Specialist
PI on 2 active trials78 Benign schwannoma publications
PM
Prashant Chittiboina, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 7 active trials
PM
Peter Marks, MD
GRAND RAPIDS, MI
Specialist
PI on 3 active trials
SP
Stanislaw R. Burzynski, MD, PhD
HOUSTON, TX
Specialist
PI on 29 active trials
HM
Helen A. Shih, MD
Specialist
PI on 1 active trial
PL
Pinan Liu
Specialist
PI on 2 active trials260 Benign schwannoma publications
JM
John Boockvar, MD
BROOKLYN, NY
Specialist
PI on 10 active trials
EP
EMILIE GARRIDO PRADALIE
Specialist
PI on 13 active trials
MM
Matthew L Carlson, MD
Specialist
PI on 1 active trial
JM
John D Heiss, M.D.
BETHESDA, MD
Specialist
PI on 6 active trials
MP
Michel Kalamarides, Professor
Specialist
PI on 1 active trial1 Benign schwannoma publication
JB
Jaishri Blakeley
BALTIMORE, MD
Specialist
PI on 1 active trial10 Benign schwannoma publications
AO
Antonio Omuro
STANFORD, CA
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Benign schwannoma.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Benign schwannomaForum →

No community posts yet. Be the first to share your experience with Benign schwannoma.

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

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

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.