Going home after brain tumour surgery

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In-depth answers on what happens when your child goes home after brain tumour surgery, and when to call the treatment team.

Key points

  • Behaviour changes in your child are normal after they leave the hospital.
  • There may be side effects or complications from a surgery or procedure that you will need to watch for in your child.

Your child will need care and support from you and the treatment team during and after treatment. Before you leave the hospital with your child, the treatment team will explain:

  • what to expect during the first few weeks
  • what side effects and complications to watch for
  • how you can help your child when they are in pain
  • when your child needs to come back for a clinic visit to check on their recovery and overall progress
  • what kind of rehabilitation therapy your child will need
  • when your child will be able to return to school
  • who to contact if you have any questions

Going home from the hospital after surgery

Some children leave the hospital and return easily to their normal daily routines, but most don't get over the effects of being in the hospital for a while. It's common to notice changes in your child's behaviour when you return home, even if your child's surgery was minor. Younger children may whine and cling to you more, wet the bed, have nightmares, or show more fear. Older children may also want more attention, become upset if you leave even for a short time, or have nightmares. Fatigue is another major issue, as it can lead to irritability and other behaviour changes.

These types of reactions are normal, even when the children have been well prepared or when the operation is minor. If the changes in your child's behaviour are extreme or last more than three or four weeks, call your treatment team.

Try to make sure your child returns to his usual routines as soon as possible, especially around mealtime and bedtime. Your child may need extra comforting and understanding for a short period of time. Although you may need to make some allowances, your child will still need you to set limits. Try the methods that have helped your child cope during stressful times in the past.

It is important that parents talk to their children about what happened in the hospital after they return home. For younger children, conversation and questions occur during play. Children may want to operate, put bandages on stuffed animals, give needles, or act out other experiences they had in the hospital. Your child may want to draw pictures about their hospital stay or continue to play with hospital equipment such as stethoscopes, tongue depressors, masks, and name bracelets. While your child plays, you may learn about any wrong ideas or questions they may have. You can talk about these together. Older children often have dreams or nightmares about their stay in the hospital. Encourage your child to talk about these dreams to help them understand what happened in the hospital.

When to call the treatment team

If you notice any abnormal symptoms, do not hesitate to contact the treatment team.

Complications from surgery

Problems, or complications, after brain tumour surgery can happen. Surgery itself can damage surrounding brain tissue and cause difficulties such as weakness, swallowing problems, or mutism.

To be safe, you should watch for certain symptoms in your child after the operation, and during the days after surgery. Contact their treatment team right away if you notice any of these symptoms:

  • fever (a temperature of 37.8°C [100.0°F] taken under the arm, or 38.5°C [101.3°F] taken in the mouth)
  • redness or swelling along the surgical incision (cut)
  • fluid coming from the incision
  • headaches
  • vomiting
  • seizures

Other potential complications from surgery include swallowing problems or mutism (inability to speak, which may last days or months).

Complications from a shunt

Shunt problems

If your child starts to experience headache, neck pain, nausea, vomiting, loss of consciousness or seizures, they may be experiencing a problem with their shunt. Another possible sign is the development of syrinx, which is the build-up of fluid in the spine, causing decreased sensation in the neck, shoulders and upper arms, or weakness in the arms or legs. Other more subtle symptoms may include a decrease in their intellectual function or school performance.

Shunt problems are usually due to a blockage in the tubing or an infection. When a shunt blockage is suspected, your child’s doctor will first determine the site of the malfunction using a CT scan or MRI scan. A preoperative CSF specimen may be taken from a shunt tap to rule out the possibility of infection.

If a shunt is not working well, your child will need to have an operation to fix the problem. The neurosurgeon will either clear the blockage or replace the shunt.

Shunt lengthening

As your child grows, the length of the shunt tubing may become too short. Your child may start to show subtle signs of a decompensated hydrocephalus. Hydrocephalus is when there is too much cerebrospinal fluid (CSF) in the ventricles of the brain. Signs of hydrocephalus may include a change in behaviour patterns or a falloff in school performance. Periodic lengthening of the shunt may be necessary to accommodate your child’s growth. If this is required, surgery will be performed to connect additional tubing to the shunt.

Infections of central lines

Central lines are thin tubes inserted into a large vein leading to the heart. Sometimes a child may need central lines inserted after surgery. Central lines can be used to provide chemotherapy drugs, antibiotics, other medicines, fluids, and nutrition to your child intravenously. One common complication of central lines is bacterial infection. The main symptoms of bacterial infection are fever, with or without chills, and swelling of the skin in the area where the central line enters the vein. Bacterial infection can be diagnosed with a blood test, although sometimes it is difficult to say for sure that the infection is due to the central line.

Central line bacterial infections are treated with antibiotics. The choice of antibiotics is determined by how ill the child is, and what the bacteria is thought to be. Antibiotics are usually started intravenously until the child has stabilized. Then a switch may be made to an oral agent. Your child's doctor will determine how long they need to receive antibiotics, depending on how serious the infection is. In some situations, and with certain types of bacteria, the central line may need to be removed. Once the infection is cured, the central line can be reinserted.

Acute side effects from chemotherapy

The side effects from chemotherapy drugs depend on the type of drugs, the dose of drug, and your child’s reaction. Some children may not have any side effects. Potential side effects from chemotherapy include:

  • nausea or vomiting
  • allergic reaction
  • fatigue
  • low blood counts
  • feeding or appetite problems
  • sore mouth or throat (mucositis)
  • diarrhea
  • constipation
  • pain and numbness at the ends of nerves in hands, feet, or jaw (neuropathy)
  • hearing loss
  • hair loss

Chemotherapy can also lead to a decrease in white blood cells (neutropenia), which could make your child more prone to infections. Typical infections associated with neutropenia include ear infections, tonsillitis, sore throat, mouth ulcers, gum infections and skin abscesses.

For more information, see "Side Effects From Chemotherapy."

Acute side effects from radiation

Potential side effects from radiation therapy include:

  • fatigue
  • hair loss
  • nausea or vomiting
  • skin problems
  • headaches

For more information, see "Side Effects From Radiation."

Acute side effects from steroids

Potential side effects during steroid treatment include:

  • stomach problems
  • personality changes, such as irritability, mood swings, crying easily, or bizarre behaviour
  • sleeping problems
  • increased appetite
  • increase in thirst and more frequent urination
  • water retention
  • skin problems
  • weakness
  • increased risk of infection
  • weight gain

For more information, see "Side Effects From Steroids."

Complications from feeding tubes

Your child may need a feeding tube to help them get enough nutrition. Feeding tubes may cause various problems, including:

  • feeding tube shifting or falling out
  • aspiration, where the fluid goes accidentally into the lungs
  • blocked feeding tube
  • diarrhea or vomiting
  • skin problems

For more information, see "Complications From Feeding Tubes."

Last updated: July 10th 2009