Living with Pineocytoma
A usually slow-growing tumor of the pineal gland in the brain that can cause headaches and vision problems.
Understanding Pineocytoma
Pineocytomas are usually slow-growing and rarely spread to other parts of the body. GARD lists adulthood as a typical time for it to appear. Signs include headaches, nausea, fluid buildup in the brain (hydrocephalus), vision problems and Parinaud syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Nausea and vomiting
- Fluid buildup in the brain (hydrocephalus)
- Vision problems
- Rapid, rhythmic eye movements (nystagmus)
- Memory or thinking 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 rare disease patient organizations for support
- 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: benign pinealoma; pinealocytoma; pineocytoma (disease); pineocytoma (who grade i); pineocytoma, benign
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Pineocytoma.
Explore research for Pineocytoma
Explore actively recruiting Pineocytoma studies with HealthSpark.
Find actively recruiting studies for Pineocytoma 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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