Meningeal melanocytoma

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6Specialists8Treatment centers

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

Meningeal melanocytoma is a rare, typically benign pigmented tumor arising from melanocytes within the leptomeninges (the membranes surrounding the brain and spinal cord). These melanocytes are normally present in the meninges and are derived from the neural crest during embryonic development. Meningeal melanocytoma is classified as a low-grade (Grade I) melanocytic neoplasm of the central nervous system, distinguishing it from the more aggressive primary meningeal melanoma. The tumor most commonly occurs in the posterior fossa, spinal cord (particularly the thoracic region), and around Meckel's cave, though it can arise at any meningeal site. Symptoms depend on the tumor's location and size and result from compression of adjacent neural structures. Patients may experience headaches, seizures, focal neurological deficits, spinal cord compression symptoms (such as weakness, sensory changes, or bowel and bladder dysfunction), cranial nerve palsies, or signs of increased intracranial pressure. The tumor typically presents as a well-circumscribed, heavily pigmented mass that may be mistaken radiologically for a meningioma. The primary treatment for meningeal melanocytoma is complete surgical resection, which is often curative when achievable. However, complete removal may be difficult depending on the tumor's location and its relationship to critical neural and vascular structures. In cases of incomplete resection, adjuvant radiation therapy may be considered to reduce the risk of recurrence. Although generally benign, meningeal melanocytomas can occasionally recur and, in rare instances, undergo malignant transformation to meningeal melanoma. Long-term follow-up with serial imaging is therefore recommended. There are no established chemotherapy regimens for this tumor, and management decisions are typically made on a case-by-case basis.

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 ↗

Treatments

No FDA-approved treatments are currently listed for Meningeal melanocytoma.

View clinical trials →

No actively recruiting trials found for Meningeal melanocytoma at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Meningeal melanocytoma community →

Specialists

6 foundView all specialists →
JM
Jana Portnow, MD
DUARTE, CA
Specialist
PI on 3 active trials
ML
Monica Loghin
HOUSTON, TX
Specialist
PI on 1 active trial
IM
Isabella C Glitza, MD
HOUSTON, TX
Specialist
PI on 1 active trial1 Meningeal melanocytoma publication
RP
Robert T. Blackwood, PA-S
Specialist
PI on 1 active trial
LM
Luc Bauchet, MD
Specialist
PI on 1 active trial1 Meningeal melanocytoma publication

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 Meningeal melanocytoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Meningeal melanocytoma

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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 Meningeal melanocytoma

What is Meningeal melanocytoma?

Meningeal melanocytoma is a rare, typically benign pigmented tumor arising from melanocytes within the leptomeninges (the membranes surrounding the brain and spinal cord). These melanocytes are normally present in the meninges and are derived from the neural crest during embryonic development. Meningeal melanocytoma is classified as a low-grade (Grade I) melanocytic neoplasm of the central nervous system, distinguishing it from the more aggressive primary meningeal melanoma. The tumor most commonly occurs in the posterior fossa, spinal cord (particularly the thoracic region), and around Meckel

How is Meningeal melanocytoma inherited?

Meningeal melanocytoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Meningeal melanocytoma typically begin?

Typical onset of Meningeal melanocytoma is adult. Age of onset can vary across affected individuals.

Which specialists treat Meningeal melanocytoma?

6 specialists and care centers treating Meningeal melanocytoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.