Making a Decision About Surgery

If the results of the pre-surgical evaluation suggest that your child will benefit from epilepsy surgery, the medical and surgical team will create a surgical plan and discuss it with you. If he is old enough, your child should be involved in the discussion as well. This discussion will include:

• the likelihood of your child becoming seizure-free after the surgery

• the risk that your child will develop new problems from the surgery, such as weakness, language or memory problems, or seizures that are worse

Before deciding on surgery, you and your child should think it over carefully. You will need to consider the possible improvements from the surgery, the risks of surgery, the risks if your child does not have the surgery, and any alternative treatments.

What questions should you ask the doctor about the surgery?

• What will this treatment do for my child?

• What is the best outcome we can expect from this surgery?

• What is the most likely outcome?

• Will my child's condition get worse without surgery, or stay the same?

• What kinds of complications might there be?

• What happens if my child doesn’t have any seizures during the invasive monitoring?

• Who will do the surgery?

• How many of these procedures are done at this hospital each year?

• What are the outcome data at this hospital for this procedure in terms of complications and seizure control?

• Why is this the best approach?

• How will you minimize pain/discomfort for my child?

• How long will it take?

• Will my child need a blood transfusion?

• How long will my child be in the hospital before and after the surgery?

• What happens after the procedure?

• How long will it take for my child to recover?

• What kind of rehabilitation and therapy is he likely to need?

• Will one or both parents need to take time off from work?

• What medications will my child be on?

• What is the long-term outlook for my child?

• What will the effect of all this be on my family?

• Are there any parents of children who have had this procedure that I can speak with?

Goals of epilepsy surgery

As with epilepsy treatment in general, the goal of epilepsy surgery is to help control the child's seizures and help him develop as normally as possible.

The primary goal of surgery is to either remove or disconnect the epileptogenic region of the brain, without causing any harm to the surrounding regions, and eliminate seizures. The epileptogenic region is that area of the brain where seizures start.

What can you expect from the surgery?

Every child is different. Depending on the nature of your child's seizures and the location of the epileptogenic region, surgery may result in complete seizure control or partial seizure control with less need for medication. There may also be some chance that the surgery will not improve things. Talk to your child's doctor about what you and your child can realistically expect as a result of the surgery.

Risks of epilepsy surgery

With epilepsy, every action -- medication or surgery or not doing anything at all -- has risks and benefits associated with it. Doctors, family, and the child (if he is old enough) need to discuss the risks and benefits and weigh them carefully against each other before deciding on surgery.

Before the operation, the surgeon will talk to you about the possible risks of your child's procedure. There are some physical changes your child will feel that will get better in time. More serious complications are very rare. Your child will be closely monitored after the operation to watch for any signs of complications developing, and they will be treated immediately.

There are several types of risks associated with surgery for epilepsy: risks of general anaesthesia, surgical risks, neurological risks, and risk of surgery failure.

Risks of general anaesthesia

There is a minimal amount of risk associated with general anaesthesia.

The most common complication during surgery is nausea and vomiting, which could result in stomach contents being inhaled into the lungs. For this reason, your child should not eat or drink anything for a prescribed number of hours before the surgery. Eating and drinking is usually stopped about six to eight hours before surgery, but your child's anaesthetist will give you the exact details. A pre-operative medication may also be given to reduce the stomach contents.

Other less common complications include changes in heart rate, blood pressure, allergic reactions, and lack of oxygen.

Effects immediately post-surgery could include sore throat, headaches, and fatigue.

Before the surgery, your child's anaesthetist and surgeon will further explain and discuss all related risks with you. The anaesthetist will be present before, during, and after the operation to monitor the vital signs and give whatever help is needed to ensure a smooth and safe experience.

Surgical risks

All surgeries, and indeed all invasive procedures, have some level of risk associated with them. There is risk of infection, bleeding (hemorrhage), and fluid build-up (edema). The surgeon and the care team will take precautions to ensure that these risks are as small as possible, and to treat these complications if they arise.

Neurological risks

Brain surgery has risks of neurological impairment resulting from damage to healthy brain tissues. It could increase existing problems or create new problems in functions of vision, speech, memory, cognition, or movement. Some deficits, like memory, may be only temporary.

In epilepsy surgery, the epileptogenic region is sometimes located close to areas of important function in the brain, such as arm or leg control. For that reason, when the epileptic tissue is removed, the child may be left with weakness in that area. Your child's doctors will discuss this risk with you before the surgery.

Surgical failure risk

Sometimes, despite careful pre-surgical evaluation and identification of the epileptogenic area, surgery may not eliminate or reduce seizures. In such cases, further evaluation (with tests and scans) and a second operation may be required. Alternatively, other therapies may be tried.

Benefits of epilepsy surgery

Surgery also has some potential benefits associated with it. If surgery is done and repeated seizures are eliminated, the risk of brain damage and neurological impairment associated with such seizures is reduced. If the surgery is successful, the child may be able to stop or reduce the dosage of anti-epileptic drugs. However, the anti-epileptic drug therapy should generally be continued for about two years following surgery, even in children who are made completely seizure-free by the surgery.

For children whose seizures have begun in the first few years of their life, early surgery may reduce the risk of mental retardation and allow normal development during the critical pre-school years. Also, the risk of physical trauma (for example, from falls) during seizures is reduced.

Although surgery will not help every child with uncontrolled seizures, it can be a very effective treatment. Various studies suggest that 57% to 69% of babies, children, and teenagers treated with surgery become seizure-free. Between 11% and 24% continue to have frequent seizures.