Brain tumour surgery

Useful Information about

Neurosurgery

Brain surgery – or neurosurgery – can sound scary. But it’s important to remember that the medical professionals who specialise in this field are experienced, skilled, and dedicated to the well-being of your child.

Understanding the basics can help put your mind at ease and give you a good idea of what’s happening in your child’s treatment journey. You don’t have to face this alone. If we can help support you in any way, please get in touch here.

Reasons for Brain Tumour Surgery

One reason for surgery is to physically remove as much of the tumour as possible through a temporary hole made in the skull. In cases where the tumour is near a delicate part of the brain, only partial removal may be possible.

Some tumours can be located in challenging-to-reach areas, or they may involve critical structures like the optic nerve or brainstem. In these cases, attempting surgical removal of the tumour could potentially cause more harm than benefit.

Certain tumours might have a slow growth rate and may not necessitate immediate surgery. In such situations, your child may undergo regular scans and monitoring to assess symptoms and observe any tumour growth. This approach is commonly known as ‘watch and wait.’ Your child’s consultant will thoroughly discuss all available treatment options and recommend the most suitable course of action.

Other surgeries detailed below include taking a biopsy or inserting a shunt.

It’s crucial that you, as a parent, are well-informed about the treatment options presented. Take the time to conduct research, ask questions, and if you still have uncertainties, don’t hesitate to request further discussions with the medical team. You may also consider seeking a second opinion or reaching out to us for additional guidance and support in making the best decision for your child’s health.

Before Surgery

You will be feeling a whirlwind of emotions so, to help you feel more in control, here are some questions you can ask the medical team:

What is the surgical process
What are the benefits and risks?
How can I explain the surgery to my child and siblings?
What side effects of the surgery might my child experience?
How long does recovery take and how much of that would they spend in hospital

Make sure you are looking after yourself to ensure you can provide your child with the best support. Family and friends can hopefully be a supportive team and we are here if you need us.

Preparing your child for brain surgery

It may be best to prepare older children for what to expect during their surgery and afterwards. You won’t have all the answers and that is fine, but your medical team should. Play specialists are fantastic at preparing children in this way. Here are some things you can do to prepare your child:

Tell them where their scar will be.
Talk about general anaesthetic – being in a deep sleep so that they are unable to feel any pain during surgery.
Talk about the hospital, and who they might meet that is there to help them
Tell them about having to be in hospital after the surgery for some recovery time.
Help your child feel in control by discussing what they want to wear to hospital and the toys they would like there. Packing an overnight bag together is a little touch that will make them feel more comfortable.

A small area of your child’s head may be shaved where the surgeon will operate.

You will get told what your child can eat or drink before surgery. Usually, they are not allowed food about six hours before surgery.

The operation will be performed under general anaesthetic. This is typically given through a small tube (cannula) in the child’s hand or arm, or through a mask placed over their nose and mouth until they fall asleep. In most cases you can go with your child to a room next to the operating theatre ahead of the procedure.

During Surgery

Surgery can take many hours and waiting can be quite overwhelming. Keep yourself busy as best you can. Take some time for yourself and take care of yourself. Get rest, food and fresh air. Having someone else with you can be really helpful

When the brain is accessed through the skull it is called a craniotomy. It will involve the neurosurgeon cutting out a part of the skull (bone flap) to gain access to the area of the brain where the tumour is located.

An MRI will have identified the exact location for the craniotomy beforehand. Sometimes surgeons use MRI during the procedure as well. There are different types of surgeries, and what the neurosurgeon uses to monitor and image the tumour during surgery is dependent on circumstance.

A craniotomy is commonly performed to remove all or as much of the tumour as possible. If fully removed, it is called total resection. If a part of the tumour is removed, it is called partial resection or debulking.

During the operation, a small area of bone from the skull will be removed to access the brain and remove the tumour. After the tumour is taken out, the piece of bone will be put back and secured with a small metal plate and screws. Your child’s scalp will be stitched back. Their brain function will be continually monitored through the surgery.

After Surgery

Straight after surgery, your child will go to a recovery room. You should be able to join your child here. When you first see them, there may be a number of machines that they will be hooked up to. Seeing this may be distressing, but the machines and people around them are there to look after them, just like you are.

They will stay here for a short while for observation and to come around from general anaesthetic. Each child takes a different amount of time to wake up, so don’t be alarmed. Next, they will be moved to an intensive care unit (ICU) or a high dependency unit (HDU). to make sure they have around-the-clock care and the best possible support to aid their surgical recovery..

In most hospitals, you will be able to visit your child in ICU or HCU at all times, but this flexibility is often restricted to immediate family.

In ICU or HDU, a nurse will carry out frequent neurological observations, which may include monitoring breathing, movement, eye movement, speech, alertness and responsiveness. They combine these assessments with your own observations to see how they are progressing.

When it is safe to move your child, they will be moved to a children’s surgery or oncology ward.

AN MRI is normally conducted within a few days to check things are settled down as they should be post-surgery. It is hard to tell the effect on the tumour at this point due to swelling and excess fluid so another scan takes place a few weeks later to give a clearer picture.

As we said earlier, your child may be surrounded by a number of machines. Some parents find it easier to know what they are and what they do. Others leave it in the hands of the professionals. Here are some you may come across:

Pulse Oximeter: A small clip attached to the finger to monitor their pulse and oxygen levels.
ECG (Electrocardiogram) Monitor: Uses small stickers placed on your child’s chest to continuously monitor their heart.
Central Line: Inserted beneath the skin on your child’s chest, often for obtaining blood and administering medications, including antibiotics or chemotherapy.
Cannulas and Drips: Used to administer medication, fluids, and transfusions until your child can resume eating and drinking.
Drain: If necessary, a drain may emerge from the bandage surrounding your child’s head to remove excess blood or fluids from the surgical site.
Catheter: A tube that enters your child’s bladder, enabling the medical team to monitor their hydration status and administer fluids when needed.
NG (Nasogastric) Tube: Inserted through your child’s nose into their stomach, this device helps prevent vomiting and serves as a means to provide liquid nourishment.
Oxygen Mask: Typically used after your child is removed from the ventilator to assist breathing. Children may resist wearing it, but the medical team can help explain its importance to them.

You can talk to your child about the machines if they want to know or a play specialist could help with this. Doing this before surgery with older children may help prepare them so it is not as shocking to them when they wake up (although it may still be due to their disorientation)

We understand that you might be worried about your child’s post-surgery experience. It’s important to know that some symptoms may persist or even worsen temporarily as your child’s brain heals from the surgery’s impact and the associated swelling. Things may seem worse for a while before they are better. Your child’s medical team will keep you up-to-date on progress

Some of the common post-surgery side effects your child might experience include the following:

Drowsiness and intermittent sleepiness immediately after surgery due to anaesthesia.
Occasional nausea, which can be managed with medication.
Headaches caused by surgery-related swelling, alleviated with pain relief.
A sore throat due to the breathing tube used during surgery.
Initial tiredness and a desire to rest more, called neurological fatigue.
Facial swelling and bruising, particularly around their forehead and eyes
You may notice new symptoms, which can be distressing. Your child’s surgeon will help you understand and manage these changes. Many symptoms will improve as your child continues to recover.

How long your child stays in hospital depends on the exact kind of surgery they’ve had or if there will be any follow-up treatments. Doctors will be able to give you a rough idea of timings ahead of the procedure, but it will take several weeks for your child to recover.

There is no guarantee for when your child will resume their usual activities. It all depends on what part of the brain the tumour was in and what functions have been impacted.

Following the operation, your child’s doctor will want a number of check-ups to see how successful the surgery was, and to keep an eye on their recovery.

Surgery to place a shunt

Cerebrospinal fluid (CSF) surrounds the brain and spine, normally flowing and draining naturally. However, when your child has a brain tumour, they may experience headaches caused by CSF accumulation in the brain. This accumulation can result from the tumour obstructing the fluid’s normal circulation or improper absorption.

To relieve this pressure and the associated sickness and headaches, some children may require a temporary or permanent drainage procedure. Temporary sterile surgical drains, called “external ventricular drains,” can be used for a week or two before removal.

In some cases, a more permanent solution involves a longer tube called a shunt. The shunt is placed into the brain’s fluid chambers (ventricles) and carefully directed under the skin to the abdominal cavity (peritoneum), where the body reabsorbs the excess fluid. These drainage procedures may occur during the tumour removal surgery or separately. Shunts are usually discreet, with a low profile under the skin and scalp, although sometimes you may feel parts like a shunt valve that controls fluid flow.

Your specialist team will provide guidance on caring for the shunt and recognizing potential issues. Modern shunts are durable, designed to last for years and allow your child to engage in their desired activities. Your child will have periodic check-ups, and during tumour scans, the shunt’s functionality will also be assessed.

Biopsy

A biopsy is a vital procedure for accurately diagnosing your child’s brain tumour. It involves taking a small sample of the tumour for examination by a specialist called a pathologist. There are different types of biopsy that can be performed. Needle Biopsy: A tiny hole in the skull is made, and a needle guided by scans is used to obtain small, rice-sized tumour samples. Open Biopsy: When there’s a risk of bleeding or a larger sample is needed, the surgeon may remove part of the skull to access the tumour directly and take samples. During Craniotomy: A biopsy can also be done during the tumour removal surgery to provide immediate information to the surgical team. A biopsy offers an accurate diagnosis, helping create the best treatment plan. A neuropathologist examines the tumour tissue to identify its type and growth rate (grade). Molecular tests may also be conducted to determine treatment options. Initial biopsy results arrive within days, with detailed tests taking a week or two. Not all children require a biopsy. In some cases, removing as much tumour as possible may be safer, and the diagnosis will follow. For tumours in challenging locations, monitoring with follow-up scans may be chosen initially. Before the biopsy, you’ll meet with the surgical team to discuss the procedure, its risks, and benefits. This is an opportunity to ask any questions you may have. Your child will have a CT or MRI scan. They’ll receive a general anaesthetic to fall asleep during the biopsy, which usually takes from 30 minutes to 2 hours.

We realise this page has a lot to take in, but we want you to be as informed as possible, and be prepared with what you can talk about to your child and their medical team.