Overview
Brain stem tumor is a term that was previously used to describe tumors that grow in the brain stem — the part of the brain that connects the brain to the spinal cord. The brain stem controls many vital functions your body does automatically, like breathing, heart rate, swallowing, and eye movements. Because this term is now considered outdated (marked as 'obsolete' in medical databases), doctors today use more specific names for these tumors depending on exactly where they grow and what type of cells are involved. The most well-known type is called Diffuse Intrinsic Pontine Glioma, or DIPG, which mainly affects children. Other types include focal brain stem gliomas and dorsal exophytic tumors. Symptoms depend on where exactly the tumor is located in the brain stem, but common problems include difficulty walking, double vision, facial weakness, trouble swallowing, and headaches. Because the brain stem controls so many critical body functions, even a small tumor can cause serious symptoms. Treatment has historically been very difficult because the brain stem is hard to reach surgically. Radiation therapy has been the main treatment for many brain stem tumors, especially DIPG. Newer targeted therapies and clinical trials are now offering hope, particularly for tumors with specific genetic changes like the H3 K27M mutation. Research in this area is moving quickly.
Key symptoms:
Double vision or blurred visionWeakness or drooping on one side of the faceDifficulty walking or loss of balanceTrouble swallowing or speakingHeadaches, especially in the morningNausea and vomitingWeakness in the arms or legsFatigue and low energyChanges in behavior or personalityDifficulty controlling eye movementsHearing 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: Brain stem tumor.
View clinical trials →Clinical Trials
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New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Brain stem tumor.
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: Brain stem tumor.
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.What exact type of brain stem tumor does my child or I have, and is the old term 'brain stem tumor' still being used for this?,Has the tumor been tested for the H3 K27M mutation or other genetic changes, and how does that affect treatment options?,Are there any clinical trials we should consider, and how do we find out if we qualify?,What are the realistic goals of treatment — is cure possible, or are we focusing on controlling symptoms and quality of life?,What symptoms should prompt us to go to the emergency room immediately?,What supportive services — like physical therapy, speech therapy, or palliative care — should we start now?,How often will we need follow-up MRI scans, and what are we watching for?
Common questions about OBSOLETE: Brain stem tumor
What is OBSOLETE: Brain stem tumor?
Brain stem tumor is a term that was previously used to describe tumors that grow in the brain stem — the part of the brain that connects the brain to the spinal cord. The brain stem controls many vital functions your body does automatically, like breathing, heart rate, swallowing, and eye movements. Because this term is now considered outdated (marked as 'obsolete' in medical databases), doctors today use more specific names for these tumors depending on exactly where they grow and what type of cells are involved. The most well-known type is called Diffuse Intrinsic Pontine Glioma, or DIPG, wh
How is OBSOLETE: Brain stem tumor inherited?
OBSOLETE: Brain stem tumor follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.