Living with Gangliocytoma
A rare, usually slow-growing tumor of the brain or spinal cord made of mature nerve cells, often linked to seizures.
Understanding Gangliocytoma
The most common site is the temporal lobe of the brain, but it can arise anywhere in the CNS, including the cerebellum, brainstem, and spinal cord. It is among the tumors most often tied to epilepsy. These tumors are generally slow-growing and usually do not become malignant. It can occur at a variety of ages.
Signs & symptoms
Symptoms depend on where the tumor is. GARD lists these among the most common:
- Seizures (most common)
- Headache
- Loss of half of the field of vision (hemianopia)
- Increased pressure in the brain
- Hormone (endocrine) problems
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Children's Tumor Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Children's Tumor Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Children's Tumor Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Patient organizations
- Children's Tumor FoundationGangliocytoma · United States
- Children's Brain Tumor FoundationGangliocytoma · United States
- National Brain Tumor SocietyGangliocytoma · United States
- Pediatric Brain Tumor FoundationGangliocytoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Gangliocytoma.
Explore research for Gangliocytoma
Explore actively recruiting Gangliocytoma studies with HealthSpark.
Find actively recruiting studies for Gangliocytoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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