Living with Choroid plexus papilloma
A non-cancerous brain tumor that makes extra brain fluid and can cause pressure and headaches.
Understanding Choroid plexus papilloma
CPPs most often occur in children but can occur in adults. Tumor cells make extra CSF, which can cause hydrocephalus (too much fluid in the brain) and pressure inside the head. Infants, especially with a tumor in the third ventricle, can have hydrocephalus or a larger head size.
Signs & symptoms
Symptoms vary from person to person. GARD says they can include:
- Headaches
- Nausea and vomiting
- Drowsiness
- Swelling of the optic nerve (papilledema)
- Vision changes
- Too much fluid in the brain (hydrocephalus)
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
Alex's Lemonade Stand 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: Alex's Lemonade Stand 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 Alex's Lemonade Stand 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 says some cases may come from a genetic change in the TP53 gene. It is listed as autosomal dominant.
Also known as: benign choroid plexus papilloma; choroid plexus papilloma, no icd-o subtype; cpp; papilloma of choroid plexus; papilloma of the choroid plexus
Patient organizations
- Alex's Lemonade Stand FoundationChoroid plexus papilloma · United States
- Children's Brain Tumor FoundationChoroid plexus papilloma · United States
- Pediatric Brain Tumor FoundationChoroid plexus papilloma · United States
You are more than your diagnosis
Perspectives from people navigating life with Choroid plexus papilloma.
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