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Living with Craniopharyngioma

A slow-growing, non-cancerous brain tumor near the pituitary gland that can affect hormones, vision, and growth.

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Understanding Craniopharyngioma

Craniopharyngioma is a slow-growing, non-cancerous brain tumor that develops near the pituitary gland and the hypothalamus.

The pituitary and hypothalamus are small glands at the base of the brain that control hormones. The tumor is not cancer, but it can press on nearby parts of the brain. This can cause hormone changes, vision changes, slow growth, headaches, nausea and vomiting, loss of balance, hearing loss, and mood or behavior changes. GARD says the cause is not well understood. It can occur at any time in life.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Headache
  • Vision changes, including loss of side vision
  • Low pituitary hormone levels (hypopituitarism)
  • Nausea and vomiting
  • Excess daytime sleepiness and sleep problems
  • Underactive sex glands (hypogonadism)

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include brain and nervous system specialists, cancer specialists, genetic specialists and hormone specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Raymond A. Wood Foundation and Pituitary Network Association may keep lists of experts for this condition.

Care & treatment

Care team
Brain and nervous system specialists (neurologists); Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
Expert care
Expert lists: Raymond A. Wood Foundation, Pituitary Network Association
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 Raymond A. Wood 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
Bring these questions to your next doctor visit
What treatment options are there, such as surgery or radiation?
How will hormones and vision be monitored?
Which specialists, such as a neurosurgeon and endocrinologist, should be on my team?

Quick facts

Symptoms usually startany time in life

GARD says the cause of these tumors is not well understood. GARD doesn't name a gene.

GeneticNeurologicalEndocrine

Also known as: adamantinomatous tumor; craniopharyngeal duct tumor; craniopharyngioma (morphologic abnormality); craniopharyngioma (who grade i); craniopharyngioma, benign; dysodontogenic epithelial tumor

Patient organizations

Source: NIH GARD · CraniopharyngiomaGARD ID 10486 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

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Explore research for Craniopharyngioma

Explore actively recruiting Craniopharyngioma studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Craniopharyngioma 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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