Epilepsy surgery may be a treatment option for a person who continues to have seizures after having tried anti-seizure medications, diet, device, or other therapies. For every person, safety, long-term health, and quality of life are important. If surgery can help decrease or stop seizures, it can benefit a person in many ways.
Not every person is a “surgical candidate.” But every person who has seizures that are not well controlled on medication should talk with their epilepsy doctor about whether surgery may be able to help them.
How is uncontrolled epilepsy defined?
People define “uncontrolled seizures” different ways. Some people may define uncontrolled as seizures that happen “too often” or seizures that get in the way of daily life. However, it is important to understand that if a person experiences any seizure activity while being treated with medications, diet, or other therapies, their seizures are uncontrolled. Other terms sometimes used to describe uncontrolled seizures are “refractory” or “drug resistant.”
Most epilepsy specialists agree that “uncontrolled” epilepsy is when seizures are frequent and severe enough, or side effects of therapy are troublesome enough, to seriously interfere with quality of life. Uncontrolled epilepsy is called drug-resistant epilepsy when:
- A person has tried 2 first line seizure medications
- And a combination of seizures medications
- And continues to have seizures
Why is it important to strive for better seizure control?
In recent years, the epilepsy community has recognized the need to strive for complete control of seizures or the best control possible.
- Uncontrolled seizures can increase risk for harm, physical injury, accidental death, and sudden unexpected death in epilepsy (SUDEP).
- Death from seizures or injury due to seizures is possible. It is important to know the risks and to make sure that everything possible is done to treat each person’s seizures.
- High doses of anti-seizure medications can increase both short-term and long-term side effects.
- Seizures that are not controlled can have social, emotional, and financial impact on a person.
When should surgery be considered?
The journey to epilepsy surgery is one that requires excellent communication between the person facing the challenges of uncontrolled epilepsy and their epilepsy team. Your team will work with you over time to be sure all possible factors impacting the success of your treatment have been considered.
It is important to review and eliminate obvious factors contributing to uncontrolled seizures, such as specific seizure triggers, missed medications, poor sleep, alcohol, stress, or other illness. (Learn about managing seizure triggers.) If the epilepsy team decides that the definition of drug resistance is met, then epilepsy surgery may be considered.
Epilepsy surgery may be possible when one or more of the following situations exists:
- The person has tried two or more anti-seizure medications yet continues to have seizures.
- The person’s seizures are socially disabling, affect day-to-day life, and reduce their quality of life.
- The person has drug-resistant focal epilepsy, which means their seizures always start in the same region.
- An MRI (magnetic resonance imaging or brain scan) shows an abnormality in an area of the brain where seizures are also known to start.
- Certain people with uncontrolled generalized epilepsy who have drop attacks (atonic seizures) and tonic seizures may benefit from surgery.
- The person has seizures that cause increased risk for injury, status epilepticus (when seizures last longer than 5 minutes or occur close together without recovery), or SUDEP.
There are multiple different types of surgery, and there are also surgical procedures that include the implantation of a stimulator to help control seizures.
- Surgically-implanted stimulator devices, such as those used for vagus nerve stimulation (VNS) and responsive neurostimulation (RNS), can also be considered if resective surgery is not an option.
- Minimally invasive laser ablation surgery (also known as thermal ablation or laser interstitial thermal therapy, LITT) or stereotactic radiosurgery are also options for some people.
Is epilepsy surgery an option for children?
Like adults, uncontrolled seizures in children can cause many problems. There can be cognitive (thinking), psychosocial (behavior), and developmental effects associated with uncontrolled seizures in children.
After careful evaluation, children with drug resistant seizures may benefit from epilepsy surgery options. Common surgical options considered include:
- Removing an area of the brain, called a focal resection. This is an option when the place where seizures start is known and removal of brain tissue will not cause difficulty with important functions like speaking, movement, or memory.
- Disconnection surgeries are used to help remove brain connections that cause seizures to spread from one side of the brain (hemisphere) to the other side. Surgeries that are considered “disconnection” surgeries are called hemispherotomy, functional hemispherectomy, and corpus callosotomy. Corpus callosotomy may be an option for children with generalized drop (atonic) seizures.
- Children 4 years and older may also benefit from surgery to implant a vagus nerve stimulator (VNS).
Improved seizure control after surgery can positively impact a child’s independence, family, and school life. It may also be possible to decrease or stop anti-seizure medications if surgery is successful.
It is important to talk about surgery as an option with your child’s epilepsy team early on if your child’s seizures are not controlled. Epilepsy surgery should not be considered a treatment of last resort.
Any child in whom epilepsy surgery is being considered should seek evaluation at a Level 4 Comprehensive Epilepsy Center certified by the National Association of Epilepsy Centers (NAEC).
Evaluation at a center with pediatric epilepsy surgery experience is critical for children with drug resistant epilepsy. Epilepsy center teams will help parents understand and explore choices that are available for their child. They will also offer the support families need as they proceed through the epilepsy surgery journey.
