Living with Rosette-forming glioneuronal tumor
A rare brain tumor made of nerve and support cells that often arises near the back of the brain and can cause headaches and balance problems.
Understanding Rosette-forming glioneuronal tumor
It is made of nerve cells and glial cells, which support and protect nerve cells. It usually occurs in the midline of the brain, in the fourth ventricle or cerebellum. Some people have no symptoms and the tumor is found by chance.
Signs & symptoms
Symptoms vary from person to person. GARD lists these in its summary:
- Headache
- Vomiting
- Swelling of the optic nerve (papilledema)
- Seizures
- Poor balance and coordination (ataxia)
- Vision 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.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 National Brain Tumor Society
- 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.
Also known as: dnt of the cerebellum; dysembryoplastic neuroepithelial tumor of cerebellum; dysembryoplastic neuroepithelial tumour of cerebellum; rgnt; rosette-forming glioneuronal neoplasm; rosette-forming glioneuronal tumor of fourth ventricule
Patient organizations
- National Brain Tumor SocietyRosette-forming glioneuronal tumor · United States
You are more than your diagnosis
Perspectives from people navigating life with Rosette-forming glioneuronal tumor.
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