Children & families · Conditions
Craniopharyngioma
A benign but challenging tumour near the pituitary gland and the nerves to the eyes, which can affect vision, growth and hormones.
What is it?
Craniopharyngioma is a benign (non-cancerous) tumour that grows near the pituitary gland, at the base of the brain, close to the nerves to the eyes (optic nerves) and the hypothalamus, which controls hormones, appetite, temperature and sleep. In children it is usually partly solid and partly cystic. Although benign, its position makes it challenging to treat, and it can come back.
What symptoms can it cause?
Symptoms may include headaches, vomiting, problems with vision (often loss of side vision, which children may not notice), slow growth, delayed puberty, excessive thirst and passing large amounts of urine, tiredness, or weight gain.
How is it assessed?
An MRI scan shows the tumour, and a CT scan may show calcium within it. Your child will have blood tests of hormone function and a formal eye and visual field assessment. The case is discussed with the endocrinology, oncology, ophthalmology and radiation oncology teams.
What are the treatment options?
Treatment is planned to control the tumour while protecting vision and the hypothalamus. Options include surgery to remove the tumour, through the skull or, for some tumours, endoscopically through the nose with an ear, nose and throat surgeon; drainage of a cyst, sometimes with a reservoir placed under the scalp; and radiotherapy, often after partial removal. When the tumour is closely attached to the hypothalamus, a planned partial removal followed by radiotherapy may be safer than attempting complete removal.
When might surgery be considered?
Surgery is usually considered at diagnosis, particularly when vision is threatened or there is hydrocephalus. The approach and aims are discussed with you in detail.
What to expect from recovery and follow-up
Children usually stay in hospital for a week or more. Many need hormone replacement, sometimes lifelong, and careful monitoring of fluid balance after surgery. Long-term follow-up with the endocrinology team, regular MRI scans, eye checks and support with weight, energy and schooling are important.
When to seek urgent help
If your child is very drowsy, difficult to wake, has a seizure, repeated vomiting or a severe headache, go to the nearest emergency unit or call 10177. If your child is under our care, also call the hospital switchboard and ask for Dr Labuschagne (Netcare Unitas Hospital 012 677 8000; Nelson Mandela Children's Hospital 010 133 0600). Children who take hydrocortisone need urgent review if they are vomiting or unwell, as they may need extra doses; follow the emergency plan from the endocrinology team.
This page is general information for parents and caregivers. Your child's doctor will advise on what applies to your child.