Overview
Low-grade ependymoma is a type of brain or spinal cord tumor that grows from cells called ependymal cells. These cells normally line the fluid-filled spaces inside the brain (called ventricles) and the central canal of the spinal cord. The term 'low-grade' means the tumor grows slowly and the cells look relatively normal under a microscope. It is worth noting that this specific Orphanet classification is now considered obsolete, as modern tumor classification systems (including the 2021 WHO Classification of Central Nervous System Tumors) have reorganized ependymomas into more specific subtypes based on their location and molecular features. Symptoms depend on where the tumor is located. Brain tumors can cause headaches, nausea, vomiting, and problems with balance or coordination. Spinal cord tumors may cause back pain, weakness in the arms or legs, or numbness. In children, tumors near the fluid drainage system of the brain can cause a dangerous buildup of fluid called hydrocephalus. Treatment usually involves surgery to remove as much of the tumor as safely possible, sometimes followed by radiation therapy. Because these tumors grow slowly, many patients can live for many years after diagnosis. However, they can come back, so long-term monitoring with regular MRI scans is very important. Research into targeted therapies based on tumor genetics is ongoing and offers hope for better treatments in the future.
Key symptoms:
Persistent or worsening headachesNausea and vomiting, especially in the morningProblems with balance or walkingBack or neck painWeakness or numbness in the arms or legsBladder or bowel control problems (with spinal tumors)Vision changes or double visionFatigue and low energySeizuresEnlarged head in young children (due to fluid buildup)Difficulty concentrating or memory problems
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Low-grade ependymoma.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Low-grade ependymoma.
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 OBSOLETE: Low-grade ependymoma.
Community
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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.
Questions for your doctor
Bring these to your next appointment
- Q1.Was my tumor completely removed, and what does that mean for my risk of it coming back?,Should my tumor tissue be tested for molecular markers, and how will those results change my treatment plan?,Do I need radiation therapy, and what are the short- and long-term side effects?,How often will I need MRI scans, and for how long?,Are there any clinical trials I should consider for my specific tumor type?,What rehabilitation services do you recommend to help with any physical or cognitive effects?,Should other members of my family be evaluated or tested for any related conditions?
Common questions about OBSOLETE: Low-grade ependymoma
What is OBSOLETE: Low-grade ependymoma?
Low-grade ependymoma is a type of brain or spinal cord tumor that grows from cells called ependymal cells. These cells normally line the fluid-filled spaces inside the brain (called ventricles) and the central canal of the spinal cord. The term 'low-grade' means the tumor grows slowly and the cells look relatively normal under a microscope. It is worth noting that this specific Orphanet classification is now considered obsolete, as modern tumor classification systems (including the 2021 WHO Classification of Central Nervous System Tumors) have reorganized ependymomas into more specific subtype
How is OBSOLETE: Low-grade ependymoma inherited?
OBSOLETE: Low-grade ependymoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.