Craniopharyngioma
Find a neuro specialistA craniopharyngioma is a very rare benign type of primary brain tumor that grows near the pituitary gland. It occurs in fewer than 5,000 people in the U.S. We don’t know what causes these tumors or what kind of cells they grow from. Our specialists will work with you to decide on craniopharyngioma treatment that meets your needs.
Types of craniopharyngioma tumors
Craniopharyngioma tumors can be divided into two types. Cells from the tumor are examined under a microscope. Cells may also be evaluated using biomarker testing to find any mutations or changes in genes or chromosomes. Based on the findings, your tumor will be diagnosed as one of these types:
- Adamantinomatous craniopharyngioma: Most common type. Often occurs in children ages 5-14 or in adults ages 50-74.
- Papillary craniopharyngioma: More rare type. Occurs mostly in adults.
Craniopharyngioma symptoms
Craniopharyngioma symptoms can start to occur at any age. Symptoms vary from person to person and depend on the size and location of the tumor. Common craniopharyngioma symptoms may include:
- Changes in mood or behavior
- Headaches
- Hearing loss
- Hormonal changes
- Loss of balance
- Nausea and vomiting
Even though they’re benign, craniopharyngiomas can still cause serious symptoms. If they become large enough, they can press on nearby tissues, including your pituitary gland, your hypothalamus (an endocrine organ) and your optic nerves (which control vision). The pituitary gland produces many important hormones, and the hypothalamus controls the release of those hormones.
Symptoms from a craniopharyngioma that has grown bigger could include:
- Adrenal failure: Causes dizziness, sleepiness, muscle weakness, weight loss and pain in your stomach.
- Changes in sexual function: Including impotence and menstrual irregularities.
- Growth and development problems: Delayed puberty and stunted growth in children.
- Excessive thirst and urination: Also called “diabetes insipidus.”
- Hypothyroidism: Causes weight gain, fatigue, constipation and an inability to tolerate cold temperatures.
- Decreased vision: Including poor peripheral vision.
Craniopharyngioma tumors don’t grow into other areas of the brain or parts of the body.
Craniopharyngioma diagnosis
You’ll start by meeting with your doctor, who will examine you and discuss your symptoms. Your doctor may suggest imaging tests like a CT scan or MRI for craniopharyngioma evaluation, as well as a neurological exam to check your vision, hearing, balance, coordination and reflexes.
Your doctor might refer you to an eye specialist (ophthalmologist) or a gland specialist (endocrinologist) to make sure that you’re not having vision or hormone problems.
Craniopharyngioma vs. pituitary adenoma
Craniopharyngiomas and pituitary adenomas are similar brain tumors. However, pituitary adenomas grow in the pituitary gland instead of near it. They’re also fairly common and may become cancerous in rare cases. Your doctor will be able to tell which kind of brain tumor you have based on testing and the location of the tumor.
Craniopharyngioma treatment options
Craniopharyngioma treatment varies depending on the size and location of the tumor as well as your age and general health.
Brain surgery (craniotomy) performed by an experienced neurosurgeon is the most common treatment for a craniopharyngioma. Removal of these tumors can be tricky because they tend to stick to parts of the brain, including the hypothalamus. This makes it hard to remove the entire tumor without damaging parts of your brain that the tumor is stuck to.
At Aurora Health Care, we specialize in minimally invasive surgery techniques, such as the expanded endonasal approach (EEA), which involves a shorter hospital stay, quicker healing time and fewer scars than traditional brain surgery.
Radiation therapy, including CyberKnife® radiosurgery, may be recommended if the tumor is too difficult to remove surgically. CyberKnife® radiosurgery is a noninvasive, robotic system that delivers high-dose radiation therapy to tumors with pinpoint accuracy. Cyberknife® is a form of stereotactic radiosurgery.
Research on craniopharyngioma treatments may offer other options for treatment. Your doctor will let you know if there are promising clinical trials that might be appropriate for your condition.
Your doctor may prescribe medication to manage hormonal imbalances related to your tumor like adrenal insufficiencies or a growth hormone deficiency.
Monitoring for craniopharyngioma
For some tumors that have mild symptoms, your doctor may recommend regular monitoring of the tumor as craniopharyngioma treatment. Monitoring avoids or delays the risks associated with surgery on the brain. You’ll have regular imaging tests and appointments with your doctor to discuss any changes in symptoms.
Long-term monitoring is also necessary after surgery or radiation treatment for a craniopharyngioma. Your doctor will watch for any recurrence of or complications from your tumor.
Get care
We help you live well. And we’re here for you in person and online.