Recovering after children’s brain surgery

Recovering from brain surgery can take some time, both in hospital and at home. Neurosurgery is a big operation. Many children stay in an intensive or high dependency unit for the first few days. After that they are usually looked after on the children’s ward. 

It’s difficult to say how long your child will spend on the ward. Some children are only in for several days but some stay for longer. This is usually children who need intensive rehabilitation after surgery.

Children’s wards can be busy and noisy places. But they tend to be more relaxed and child friendly places than adult wards and intensive care units. The nurses won’t need to do quite so many checks once they are on the children’s ward. And you should be able to be more involved in their care.

In most children’s wards one parent or carer can stay overnight with their child. Your child’s nursing team, or clinical nurse specialist, will let you know what to expect.

Immediate side effects

Common immediate side effects of surgery are infection and blood collection around the operation site (haematoma). Brain surgery can also cause swelling in the brain. Your child’s surgical team watch this closely and give treatment to reduce the swelling. But it might still cause symptoms such as:

• weakness
• dizzy spells
• poor balance or lack of coordination
• personality or behaviour changes
• confusion
• speech problems
• seizures (fits)

Your child’s symptoms might be worse than before the operation at first. And you might notice symptoms that they didn’t have before.

This can be a difficult time for you and your family. You might worry that the operation has not worked. But symptoms usually lessen and they will recover.

Your child’s surgeon can give you some idea of what to expect about recovery.

Posterior fossa syndrome

Some children have certain symptoms who have had brain surgery in an area in the back of the brain. This area of the brain is called the posterior fossa. Symptoms associated with this is called posterior fossa syndrome. They can be very mild or severe. Symptoms can include:

• difficulty talking, as they might not speak, or their speech might be slurred or slow – this is the most common symptom
• difficulty swallowing
• trouble with their muscle tone and being able to move. Symptoms might include your child finding it difficult to walk, or unable to sit up
• unable to control their movements. So they may make sudden movements that look like they’re twitching or jerking. Or you might notice their eyes moving from side to side
• poor balance
• weakness on one side of the body
• changes in their mood and behaviour which doesn’t fit the situation or is out of character for them

Posterior fossa syndrome can develop from one day to a week after surgery. The symptoms usually improve slowly over a few weeks or months. But they may not go away completely in some children. Research is trying to find out what causes posterior fossa syndrome.

Your child’s wound

Your child’s nurse will arrange for their stitches or surgical clips to get taken out if they haven’t been removed before going home. This usually happens 7 to 10 days after surgery. This might mean your child will either:

• be seen by a community children’s nurse at home
• go back to the day unit or ward at the hospital they had their surgery in
• go to the local children’s hospital

You’ll also notice that their hair gradually grows back around the wound. This usually starts within a couple of weeks. But this will depend on whether your child is having chemotherapy or not. 

Tiredness, play and physical activities

Your child might feel very tired after their surgery. This is normal. They might need to rest more often. Or nap if they have done something that involves a lot of effort for them. At first, this might be having a wash, or doing exercises with the physiotherapist.

While your child is on the ward, the medical team still needs to check that they’re recovering from the surgery as expected. So they will still have neurological tests regularly. This means they might need to wake your child to do this. This can make them feel more tired.

This tiredness could last for a couple of months, but gradually gets better the further they are away from surgery. If they have other treatment, such as chemotherapy after surgery, their tiredness is likely to worsen again. This is due to the effects of the chemotherapy on the body.

Children are very good at getting on with things, so you might find them playing with their toys sooner than you think. The play specialist will be around while they’re on the ward. They’ll get involved in helping them play and do things they would normally do.

Your child’s surgeon will talk about when they can get back to doing physical activities, such as swimming or PE at school. 

Going back to school

Every child recovers differently from this type of surgery. It also depends on whether they will need another treatment after surgery, and when this will start.

Schools are very understanding and will do everything in their power to help your child settle back in. It may mean they start by going in for a few hours. And then as they recover, they can gradually build up how long they are in for.

It’s best to talk to your child’s clinical nurse specialist (CNS) about plans for school and education while having cancer treatment. The CNS can also communicate with or even visit the school to help support the staff in caring for your child.

Long term problems after surgery

Some children recover well after brain surgery. And they only need a small amount of extra help with their everyday life or at school. Other children have more problems. Or longer term difficulties.

These problems depend on the area of the brain that the tumour was, or still is. They might include:

• difficulty walking or moving around
• learning problems
• problems at school
• behavioural issues
• problems with speech
• hormone problems

There is support and help available for children who have long term problems after treatment for a brain tumour.

Other treatment

It’s common for children to have more treatment after brain surgery. This might be chemotherapy, radiotherapy or both. Your child’s team will let you know what to expect.