Gage is a boy who had epilepsy surgery for his intractable seizures. But his seizures were coming from a cavernous malformation (focal area of abnormal blood vessels) that was right next to the part of the brain that controlled movement of his left arm and leg (eloquent cortex). For this reason, his epilepsy team decided to wake him up in the operating room and test him to carefully map these important brain regions. This allowed for him to have the operation with very little weakness to his left arm and leg. 

It is important to remember when preparing for epilepsy surgery that every child’s experience and path is different. Review this list of commonly asked questions about epilepsy surgery. Make sure to ask your child’s epilepsy surgery team all these questions well before the surgery.

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How many stages are involved in my child’s surgery?

For many children, surgery may be straightforward. A resection (or removing the area causing the seizure) can be done in one stage or procedure. But often the child may need to undergo 2 stages or procedures.

When 2 stages are needed, the first stage is extra testing to locate where seizures are coming from. This may be done with electrode grids or strips or with implanted depth or stereoelectrodes (also called Stereo-EEG or SEEG).

Using Grids or Strips to Find Where Seizures Start

  • This first procedure involves a craniotomy (removal of part of the skull) to place the grid or strips on the surface of the brain.
  • The child stays in the hospital and wires attached to the grid or strips are connected to an EEG (electroencephalograph) to capture where seizures occur.
  • In the days after a subdural grid is placed, the child often has swelling and bruising on the face and head close to where the grids are placed. The child is watched closely for fluid collection or bleeding around the grids. The child may have headaches and nausea.
  • Once enough information has been gathered, the child will then have another surgery to remove the grid and resect or remove the seizure focus (the area of brain where seizures start).
  • The child can return to normal day-to-day activities as tolerated. It takes 6 weeks for the bone to heal so the child should avoid contact sports until 6 weeks after surgery. They should not do any sports after surgery until they talk to their epilepsy doctor and surgeon.

Using Stereoelectrodes or Depth Electrodes to Find Where Seizures Start

  • When stereoelectrodes or depth electrodes are used, the child will have them implanted by a neurosurgeon.
  • The child stays in the hospital for 1-2 weeks and wires from the electrodes are connected to an EEG to find where seizures start in the brain.
  • After these electrodes are placed, the child may have a headache or mild nausea for 1-3 days. These side effects are treated with medications.
  • The stereoelectrodes are removed under anesthesia in a procedure that typically takes less than 1 hour.
  • The child can go home after they have recovered from that procedure, which is typically by the next day.
  • If the child is to have a resective surgery, they will return 4-8 weeks later for that surgery. This time allows the incisions to heal and decreases the risk of infection. After this procedure the child can resume normal activities as tolerated.

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If my child needs the 2 stage surgery, what will be used? Grid/strip or stereoelectrodes/depth electrodes?

Whether to place a grid or stereoelectrodes will be thoroughly discussed with the epilepsy surgery team and decided based on the child’s needs.

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What monitoring will be going on during the surgery?

  • Your child’s vital signs (breathing, heart rate, blood pressure, oxygen levels) and comfort will be monitored throughout the surgery by the anesthesiology team.
  • General anesthesia is used during brain surgery, which requires placement of a breathing tube.
    • Side effects from general anesthesia may include nausea, vomiting, headache, sleepiness or dizziness. This typically lasts a few to several hours (occasionally days) and then goes away.
    • Some children appear “jittery” as the anesthestic wears off. This can also last hours to a day or two and then goes away.
    • The biggest complaint from use of a breathing tube is a sore throat. This affects every child differently - it may hurt to swallow or talk for hours to a couple of days.
    • The tube is usually taken out in the recovery room. On rare occasions it remains in for a brief time after surgery while the child recovers.
  • In certain cases, more brain monitoring is needed during surgery.
    • This could include electrocortigography – this involves temporarily placing a grid on the surface of the brain during surgery to help guide removal of the seizure focus.
    • Your child may also have motor and sensory monitoring during the surgery to make sure those areas are protected. Those tests are called motor evoked potentials and sensory evoked potentials.

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What is brain mapping, where does it happen, and will it be necessary for my child? What are the risks and benefits?

  • Depending on the kind of surgery you child has, mapping may or may not be needed. If surgery is close to a very important brain area (such as language), then mapping will typically be done to help the surgeon better define what areas to avoid in surgery. The mapping may also give information on what problems might be possible after surgery.
  • Brain mapping is a procedure done by an epilepsy specialist or surgeon. Very tiny amounts of stimulation are sent to small areas of the brain where the implanted electrodes are placed. For example, to see where the motor control of your child’s hand is, a small electric current will be supplied to one of the electrodes. If hand movement is changed, the location of motor hand function has been found in your child’s brain.
  • Mapping can be done at the bedside or in the operating room.
  • Mapping the brain is a safe way to determine function of a specific part of the brain. It can help guide surgical planning. Because this involves a small electrical stimulation to the brain, there is a small risk of triggering a seizure. Seizures are often brief; however, if the seizure persists, your child may need extra medication to stop the seizure.

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What problems are expected after epilepsy surgery?

  • After nearly all brain surgeries, children may have some pain for 2-3 days. This pain may be a headache or may be at the site of surgery on the skull.
    • If the incision is close to the face, the child may have temporary swelling, and occasionally bruising, around the face and eyes. This lasts for 1-4 days and then improves over the next week.
    • If pain medication (narcotic) is needed, constipation is a common side effect. Therefore a stool softener is given.
    • Some children are “irritable or moody” from narcotics. Their pain is often controlled with acetaminophen (Tylenol) within one or two days after surgery with only occasional need for narcotics.
  • It is common for a child to have an upset stomach, nausea, vomiting, sleepiness or dizziness from the anesthic used. Children are given medications to help with any discomfort. These symptoms typically last a few to several hours (occasionally 2-3 days), then they get better.
  • Some children may complain of a sore throat for a few days that makes it hard to swallow or talk. This is from the breathing tube used during surgery. A child may be given cough drops or medication to help the sore throat.
  • Seizures may happen after surgery due to irritation and inflammation of the brain around the surgery site. This does not mean your child’s surgery has failed.
  • Sometimes after certain types of surgery, it's expected that some children may have problems afterwards. For example, a child who has a surgery called a hemispherectomy or hemispherotomy will have weakness or paralysis on one side of their body. They will also lose part of their vision. Whenever a child has expected changes like this, they will need intensive therapy to help them get back as much strength and function as possible.

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What is the chance that my child will be seizure free after this surgery?

  • Having epilepsy surgery is not a guarantee that a child will be seizure-free. Some surgeries, such as a functional hemispherotomy for epilepsy, may have a greater than 90% chance of making a child seizure-free. However, this is not a common type of epilepsy surgery – it’s a specific surgery for severe types of epilepsies.
  • Your child’s individual chance of seizure freedom should be thoroughly discussed with your epilepsy surgery team prior to surgery.

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What will my child's scar look like?

Scars may look different depending on where the surgery is. Talk to the surgeon before surgery about where the scar will be.

How long will my child be in the hospital after this surgery?

  • Most children spend at least 1 night in the intensive care unit after surgery for close monitoring. Some children spend longer, depending on the type of surgery. Children will then go to a general hospital bed for 1-4 days. Most hospitals allow parents to spend the night with their child in the hospital. Typically, hospitals do not allow siblings to spend the night, unless they are adult aged.
  • After surgery, some children may go to a rehabilitation center or floor of the hospital for more frequent physical and occupational therapy. This is done after some types of surgery, such as a hemispherectomy.
  • Talk to the epilpesy surgery team about how long your child may be in the hospital or what therapy may be needed.

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How long will my child be out of school?

  • Most surgeries (resective) involve a child being in the hospital for a week. They will usually stay home for 1-2 weeks after surgery to rest and recover. Often return to school is gradual, first a few hours a day and then progressing to full days.
  • Some surgeries, including hemispherectomies, involve transferring the child from the hospital to an inpatient or outpatient intensive rehabilitation program (physical, occupatioral, or speech therapy). This rehabilitation can take anywhere from 1 to 6 weeks. It is typically recommended if the child has post-operative weakness.

How long will my child take seizure medication after surgery?

This is a very important question to ask your child’s epilepsy specialist and neurosurgeon. Each child is different. If the surgery removed all the area causing the seizures, their doctors may start lowering seizure medications months to a year after surgery. Some children have less frequent seizures after surgery and will still need medication long term.

Authored By: 
Giulia Benedetti MD
Tara Egnor NP
Nancy McNamara MD
Authored Date: 
Reviewed By: 
Elaine Wirrell MD
Wednesday, August 21, 2019