Risks and Benefits of Epilepsy Surgery
All surgery has some element of risk. Risks can be divided into those associated with the surgical procedure and risks that are more specific and associated with the brain area being operated on.
What are the risks related to surgery?
These general risks also apply to epilepsy surgery that is invasive and include:
- How a person will respond to anesthesia
- Tissue (brain) injury
- Delayed healing at surgical site
Seizures that start in one area of the brain (for example, the temporal, parietal, frontal, or occipital lobe) may be treated with invasive surgery if a seizure focus can be determined. This type of surgery is called a resection and requires opening the skull.
Your epilepsy team will do their best, using a variety of testing, to ensure the area to be operated on is not in a vital part of the brain that controls important brain functions, such as speech, movement, memory, or vision. These vital functions are stored in different parts of the brain.
In a person being evaluated for surgery, many tests, including EEG (electroencephalography), video EEG, and brain imaging scans, are used to help find the seizure focus (where the seizures start) and the functional areas near the seizure focus.
What about “minimally invasive” surgery options?
Advances in research and technology have provided less invasive (“minimally invasive”) surgery and device procedures for people with epilepsy. Even though these surgery options are considered less invasive, they still require the same level of testing prior to the procedure.
Remember, the goal of any epilepsy surgery or procedure is to stop or lessen seizures and to keep vital brain tissue that controls movement, language, vision, and memory safe.
Examples of less invasive options for treating epilepsy include:
- Laser interstitial thermal therapy (LITT), which is also called thermal ablation or laser ablation
- Stereotactic radiosurgery
- Placing neurostimulation devices (these don’t remove brain areas, but try to control seizures with stimulation)
Each surgical treatment has its own risks and benefits. Your epilepsy team will help you decide the best treatment for you. Some general risks related to these procedures include
- Complications of general or local anaesthesia
- Tissue injury (brain, nerve, or soft tissue)
Some general benefits of less invasive surgery or procedures include
- Shorter length of procedure
- Less discomfort after surgery
- Shorter hospital stay
- Quicker return to normal activities
- Decreased tissue injury
Do some types of surgery have an increased risk?
The known risks for epilepsy surgery will vary for each person. Risks depend on what type of epilepsy surgery a person is having and the area of the brain that is being operated on.
The most common type of epilepsy surgery is removing part of the temporal lobe. Risks that have been associated with epilepsy surgery include
- Problems with memory
- Loss of a small amount of peripheral vision
- Double vision
- Mood problems
- Loss of motor skills
- Speech difficulties
What else do I need to know about risks with epilepsy surgery?
- Risks will vary for each person.
- Some difficulties after surgery may only be temporary.
- Even though memory and mood changes are listed as risks, epilepsy surgery can help improve memory or mood in some people if seizures are better controlled after surgery.
- Vision changes related to surgery may improve with time. Rarely, a loss of vision on one side may prevent a person from driving or other daily activities.
- Each person must discuss risks individually with their surgeon and epilepsy team.
What are the benefits of epilepsy surgery?
The evaluation for epilepsy surgery is completed over several months. Your epilepsy team will want to ensure the benefits of surgery are higher than the risks for any potential complications.
Testing done before surgery is designed to
- Determine how helpful surgery could be for you
- Determine risks that may apply to you
- Assist you and your epilepsy team with weighing the benefits against any known risks
The benefit or “success rate” of epilepsy surgery depends on the type of surgery. The greatest benefit of epilepsy surgery is a decrease in number of seizures. For some people, this benefit means freedom from all seizures. For others, it may mean having fewer seizures.
In general, research studies done to examine the benefits have shown that:
- Approximately 70% of people who undergo a temporal lobe resection have a positive result. A positive result includes being free from seizures or having only rare disabling seizures.
- Studies also demonstrate that for people who have surgery to remove a seizure focus located in a different region (not temporal lobe), about 50% have a similar positive result. This can vary depending on the location in the brain and the underlying type of lesion.
Other benefits of a successful surgery may include
- The ability to lower or decrease the number of seizure medications a person has to take. This benefit is important to many people considering surgery since their quality of life can be affected by the side effects from anti-seizure medications.
- A higher likelihood of returning to working and to driving.
- People are less likely to experience symptoms related to anxiety and depression following a positive surgical result.
- Lower risk of seizure emergencies, status epilepticus, epilepsy related injuries, or death.
- Lower costs of living with epilepsy. Research has shown that after successful epilepsy surgery, direct and indirect health care costs of epilepsy are significantly lower.
Your epilepsy team will talk with you about your individual potential for benefiting from epilepsy surgery. It is important to remember that benefits from the surgery will depend on the type of surgery and location of the seizure focus.
Weighing the Potential Risks and Benefits of Surgery Versus the Risk of Uncontrolled Seizures
It is understandable for anyone to be scared by the idea of brain surgery. For someone who has lived with epilepsy a long time, sometimes coping with the known (seizures) is preferred to risking the unknown (surgery), even if it means living with ongoing seizures.
However, it is also important to understand risks that are associated with uncontrolled seizures. Drug resistant (also called “uncontrolled” or “refractory”) epilepsy is defined as lack of seizure control after adequate trials of 2 appropriate seizure medications.
- The chance that an additional medication will stop seizures in people with drug resistant epilepsy is less than 10% (1 in 10 people).
- As the number of failed medications increases, the chance of seizure control drops even further.
- In these people, if the area where seizures come from can be identified and safely removed, the potential for seizure freedom is significantly higher.
- The goal for every person is complete control of seizures.
What are the risks of uncontrolled seizures?
Uncontrolled seizures carry significant risks. While these risks do not affect everyone with epilepsy, it is important to be aware of what can happen if seizures are not well controlled. To help you understand more about these risks, discuss what you learn about risks of seizures with your epilepsy doctor or nurse.
- Each year, more than 1 in 1,000 people living with epilepsy will die from sudden unexpected death in epilepsy (SUDEP).
- The major risk factor for SUDEP is ongoing generalized tonic-clonic seizures (convulsions).
- If a person experiences 3 or more generalized tonic-clonic seizures per year, the risk for SUDEP drastically increases to 1 in 55 people per year.
- Risk of dying from complications of seizures or suicide is higher in people with uncontrolled epilepsy.
- Any seizure that causes a change in awareness or loss of control carries an increased risk of injury.
Other ways uncontrolled seizures can affect quality of life include:
- More problems with memory and learning over time
- Higher risk for depression, anxiety, and suicide
- Unable to drive, which for many people limits independence and social activity
- Problems finding and keeping a job, causing financial insecurity
- Limitations from enjoying certain sports or activities
- Limiting social opportunities and affecting relationships with others
Brain surgery is an important treatment option for many people living with epilepsy who have seizures that are drug resistant. The evaluation process for surgery does requires extensive testing. However, when seizures do not respond to medicine, surgery sometimes may be the only option that can help a person achieve seizure freedom or a significant decrease in disabling seizures. Therefore, benefits may outweigh the risks.
Your epilepsy team can provide you with the information and support to guide you through the evaluation for surgery, understanding the risks and benefits of epilepsy surgery, and making the best treatment decisions that will help you control your seizures.
Understanding Risks and Benefits: Sharing Your Concerns
Can counseling help?
Counseling before surgery and talking to other people who have had epilepsy surgery are helpful for most people. Taking time to think about daily life before surgery, what is important to them, and how to manage life after surgery are important. Counseling before surgery gives people a chance to express fears about possible risks and benefits of surgery. It can also help a person find support before and after surgery and be prepared for surgery and the recovery period.
Some tips to help make informed decisions:
- Talk with your epilepsy nurse to learn what surgical risks mean for you.
- Learn about the brain area that will be operated on and the type of surgery you will be having.
- See a social worker, psychologist, or therapist to help you cope with unexpected problems that arise.
- Speak with a psychiatrist who specializes in epilepsy and learn about any possible risk for mood changes after surgery and the best way to treat these changes.
- Talk with a person who has been through a similar surgery.
- Counseling and talking with others who had surgery should not replace working with your epilepsy specialist and epilepsy surgeon.
What if I change my mind?
The decision to have surgery for epilepsy is a difficult one. Only you, together with your loved ones, can make this decision. Your epilepsy team will guide you in the process. They will give you their best advice and discuss if it is possible for surgery to help control or eliminate your seizures. Remember,
- A person may initially feel excited about surgery and the possibility that it will have a positive effect on their quality of life.
- A person may also feel anxious or scared about the procedure.
- Every person reacts differently to learning about the possibility of surgery as a treatment option.
- The decision to proceed with surgery is individual. It is ok to say, “No” to having surgery if you do not want to have it or need more time to think about it.
- Open and honest communication with your epilepsy team will help guide you to a decision that is right for you.
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