Craniopharyngioma

A craniopharyngioma is a benign type of primary brain tumor that grows near the pituitary gland. They’re very rare, affecting fewer than 5,000 people in the U.S. We don’t know what kind of cells they grow from or what causes them to form.

When you have an Advocate Health Care doctor, they’ll work with specialists that have the expertise to plan your care. They may consult with an ophthalmologist for vision concerns, an endocrinologist for hormonal concerns and a neurosurgeon with expertise in the complex techniques needed to provide the safest treatment.

Types of craniopharyngioma tumors

To determine what type of tumor you have, cells from the tumor will be gathered using surgery or a needle biopsy to be examined under a microscope. They’ll also be tested to find any biomarkers – mutations or changes in genes or chromosomes that are associated with specific types of tumors. The two types of craniopharyngioma tumors are:

• 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.

When a craniopharyngioma grows bigger, it can cause even more life-altering symptoms, such as:

• 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: Causes 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.

Although craniopharyngiomas grow, they don’t spread to other parts of the brain or the body.

Craniopharyngioma vs. pituitary adenoma

Craniopharyngiomas and pituitary adenomas are both primary brain tumors. Pituitary adenomas are different because they grow within the pituitary gland while craniopharyngiomas grow near the pituitary gland. Pituitary adenomas can sometimes become cancerous and they’re more common than craniopharyngiomas.

Craniopharyngioma diagnosis

When you meet with your doctor, they’ll perform a physical, gather your medical history and discuss your symptoms. They may perform neurological tests to check your hearing, vision, coordination, balance and reflexes.

Imaging tests such as CT scan or MRI for craniopharyngioma evaluation will be recommended. Your doctor will also rely on information gathered from a biopsy to confirm the tumor type.

Craniopharyngioma treatments

Your treatment for a craniopharyngioma will depend on the size and location of the tumor as well as your age and general health. For smaller tumors that seem unlikely to grow, your doctor may recommend continuing to monitor the tumor at intervals to see if it’s growing or if you’re developing more symptoms. This avoids or delays the risks associated with brain tumor treatments or surgery on the brain.

Monitoring is also needed after any active craniopharyngioma treatments to see if you’ve had a recurrence of the tumor or any complications.

Your doctor may prescribe medication to manage hormonal imbalances related to your tumor like adrenal insufficiencies or a growth hormone deficiency.

Surgery for craniopharyngioma treatment

Surgery is often recommended for craniopharyngioma treatment. One of our experienced neurosurgeons will have the expertise to handle this complex surgery using the latest discoveries in brain surgery.

Removing a craniopharyngioma is especially difficult because these tumors tend to stick to parts of the brain including the hypothalamus or optic nerves. Your neurosurgeon will need to remove as much of the tumor as possible without damaging the part of the brain it’s stuck to.

When possible, we’ll use minimally invasive surgery techniques so you’ll have less risk of infection and scarring along with a shorter hospital stay.

Nonsurgical craniopharyngioma treatment

Your doctor may also recommend radiation therapy to treat your craniopharyngioma tumor. Radiation therapy can target tumors with precision to help remove any tumor that couldn’t be removed using surgery.

Our doctors can also refer you to any clinical trials that may be appropriate for you and your tumor. Clinical trials may offer you access to the newest available treatments for this rare brain tumor.