Headaches in Craniosynostosis

Headaches are common in children. It can be difficult to figure out if these headaches are “normal” headaches, or if they are a sign of a more serious problem. In children with craniofacial problems, headaches can be a sign of increased pressure inside the head.

Craniosynostosis is a condition where the bones of a baby’s skull fuse early. This can lead to an unusually shaped head and can affect the growth of the brain. Craniosynostosis is treated with surgery mostly before the children are one year of age. Surgery is performed to improve the shape of the head and to give the brain more room to grow.

In the years following surgery for craniosynostosis, children are followed up at our craniofacial clinic at the Children’s Hospital Westmead. The craniofacial doctors are especially interested in whether the children have complained of any headaches. Headaches may be a sign of rising pressure inside the head – but headaches in children are common anyway – so how can doctors tell the difference?

A recent study from the Craniofacial Unit in Seattle looked at how common headaches were in their patients. They found that one-third of children who had previously had surgery for craniosynostosis complained of headaches at some point after their surgery. However, only 6% of children actually required treatment for raised pressure inside the head. This means that the majority of headaches in children are NOT pressure inside the head, even if they have had surgery for craniosynostosis.

For children who have previously had surgery for craniosynostosis, there were some types of headaches which were more likely to be associated with pressure inside the head. These are the potential danger signs which parents and carers need to look out for:

  • Headaches in the mornings
  • Headaches made worse with bright lights
  • Headaches where the child feels nauseous or vomits
  • Headaches that cause the child to want to rest and lie down

These danger signs are more common in children what have what is called “syndromic craniosynostosis”. Syndromic craniosynostosis is where, in addition to the fused bones in the skull, the children also have other medical issues (for example problems with the growth of their cheekbones, arms or legs). Other children with an increased risk of dangerous headaches are those who initially had multiple bones fused and those who have a condition called Chiari Malformation (where part of the brain tissue extends out of the skull into the top part of the neck)

So if you are the parent or carer of a child with craniosynostosis, don’t be alarmed by an occasional headache. If the headaches fall into one of the “dangerous” patterns above, or if you are concerned in any way, please contact the Craniofacial team at the Children’s Hospital at Westmead.

Dr Damian Marucci, Plastic and Reconstructive Surgeon