Goals and Expectations
Epilepsy Surgery: Understanding Goals and Expectations
Goals and expectations for surgery will vary for each person. Your epileptologist and epilepsy surgeon will help you understand the treatment goals of epilepsy surgery. Share your personal goals and expectations with your epilepsy team to see how realistic they may be.
What is the difference between goals and expectations?
- Goals can be thought of as the desired result of surgery or what you aim to achieve by having epilepsy surgery.
- Expectations are what you anticipate, or hope, may happen as a result of having epilepsy surgery given your unique situation.
What are some general goals of epilepsy surgery?
Three main goals of epilepsy surgery are:
- Seizure freedom (no seizures) or free of disabling seizures
- Improvement in quality of life and increased independence
- Ability to decrease or stop taking anti-seizure medications
These goals are accomplished by:
- Pre-surgical evaluations that include EEG (electroencephalogram) testing, brain imaging, memory and language testing, and the coordinated effort of an epilepsy team.
- Carefully planned surgery, specific to the type of seizures and the location where seizures begin in their brain
- Pre-surgical tests that help to keep critical (speech and memory) brain tissue safe
- Seeking psychological support for making the lifestyle changes that may happen with changes in seizures after surgery.
Are my goals and expectations for epilepsy surgery realistic?
This is a great question! What may be realistic for one person, may not be for another.
Before surgery, take time to ask yourself these questions:
- What would success from surgery be like for me?
- What do I hope can happen in my life if surgery helps me become seizure free?
- What if I still have to take seizure medications even after surgery? How will I feel about this?
Before surgery, each person should understand that even a successful surgery may not result in zero seizures or take away the need for anti-seizure medication. Remember each person will have different goals and expectations.
Consider the following examples:
- Instead of having seizures every week, Jane has only 1 or 2 seizures a year after her epilepsy surgery. Even though Jane is not seizure free, she has had a real improvement in her quality of life. She has been able to socialize and return to her studies. Jane considers her surgery a success.
- After surgery, instead of having seizures with a loss of consciousness, falls, and injuries, Alex has 1-2 brief focal seizures or auras (warnings) each month. Alex is now free of high-risk disabling seizures. This has allowed Alex to try new things and feel more confident in his day-to-day activities. He is less worried about having a seizure at work or while out with friends. Alex considers his surgery a success because he is free of seizures that used to cause him injuries.
- Elizabeth is seizure free after surgery, but only if she continues to take her anti-seizure medicine. Her doctors feel that coming off the anti-seizure medicines would likely lead to more seizures. Elizabeth feels this is a success for her since she is free of seizures.
In each of the examples, success is defined differently. It is important to understand how a person’s life may or may not change after surgery. Does having fewer seizures or taking less medicine change how a person feels, what they can do, and what their future may look like?
The following examples demonstrate that for some people, changes in their lifestyle may or may not be related to the success of their surgery:
- Two years after his surgery, Paul has stayed seizure free and has been able to stop all his anti-seizure medicines. He has not made any changes to his lifestyle or activities despite this drastic positive change in his health.
- After having lived with unpredictable, daily seizures for a decade, Janice had surgery. She now has only brief, occasional auras that don’t affect her awareness. Janice has been able to begin working and feels confident enough to live on her own. She is still on anti-seizure medicines but considers her independence a marker of her surgical success.
- Since his epilepsy surgery, George has been seizure free and has been able to come off all anti-seizure medicines. He is very happy that he is able to drive. George is having problems with relationships and adjusting to life after surgery, because he and his family have not been able to adapt to his new level of independence.
- Andrea had epilepsy surgery one year ago. She is still having one seizure a month, but this is much better than daily seizures that happened before surgery. She is no longer falling or having seizure emergencies that lead to having to stay in the hospital. She and her husband are now feeling confident about their plans to start a family.
These examples highlight different results that people may experience. All people have an idea of how they want to live their best life. The benefits of epilepsy surgery will help some people move forward in life. For others, there may be a longer period of adjustment to changes that come after surgery. Discuss with your epilepsy team the things that are important to you and the goals and expectations you have.
How likely is it that medicines will be lowered after surgery?
When doctors talk about the chance for seizure freedom after surgery, those percentages typically do not consider whether a person stays on the same doses of seizure medication.
- People will leave the hospital after their surgery on the same medicines as before surgery.
- In the months after epilepsy surgery, typically the doses of seizure medications will not change or may be only slightly lower.
- After several months, your epilepsy team will talk to you about being able to safely lower doses of anti-seizure medicines.
- In some cases, people who have had successful surgery are able to stop taking anti-seizure medicine.
- The decision to change or lower medicine is based on each person’s progress, including:
- How well their seizures have been controlled
- The cause of their epilepsy
- The risk for more seizures if medicines are stopped
Factors that suggest medications can eventually be lowered or stopped include:
- If the seizure focus or area where seizures started was completely removed
- EEG testing done after surgery does not show markers for seizure activity
- No seizures or auras after surgery
If changes in medication are made, they are usually done gradually. Ultimately, these decisions are based on a discussion between the person, their epilepsy doctor, and their nurse.
- Typically, small changes are made over a number of months.
- Repeat follow up visits are needed.
- EEGs may be done at regular intervals as your anti-seizure medication is decreased.
- If seizure activity is seen on an EEG test, the anti-seizure medicine may be increased again.
Even if medications cannot be stopped entirely, very often doses may be lowered or a person may be able to take fewer medications.
What can I tell my family to expect?
Families and caregivers have often been very involved for years with the medical care of their loved one’s seizures. While surgery is a promising and positive step, it can also be a long journey. Some aspects of family and caregiver responsibilities change while their loved one is in the hospital. This is often unexpected and difficult. People may have a range of feelings, such as:
- Helplessness and hope - Families may experience one or both of these emotions while the person is having pre-surgical testing with EEG monitoring or as they wait for test results to see if seizures can be localized. These feelings may continue after surgery as they wait to see what happens as their loved one recovers.
- Difficulty letting go - Families who typically have such an active role in their loved one’s life and seizure care may have a hard time letting others take care of their child, partner, or loved one. During video EEG monitoring, waiting for their loved one to have a seizure and not being able to comfort them when they are confined to a bed can be very hard. There will be times when care must be left to the doctors and nurses. While they learn to let go and let others help, they also may struggle with needing to be their loved one's voice and advocate.
- Supporting, advocating, and caring - Families should be encouraged and re-assured that their presence is critical to supporting the person having testing or surgery. Their expert knowledge of their loved one can be a great asset to the person and to the entire healthcare team. It’s also important that they have people supporting and caring for them. Going through this process involves care for the entire family.
Will roles in the family change after surgery?
- Successful surgery may help someone be more independent and adventurous. Family members will need to adjust to new roles and responsibilities.
- These positive goals may upset typical family dynamics. Giving and getting independence is a milestone that has to be thoughtfully and adequately addressed by each person and their family. Lifestyle changes, even very positive ones, will require an adjustment period for both the person living with epilepsy and caregiver.
How should I decide if surgery is right for me?
The decision to pursue surgery should be made only after working with your epilepsy team. This would involve the epileptologist and neurosurgeon who talks about the likelihood of success and the types of risks from surgery. Other team members, such as the nurse, social worker, psychologist, or psychiatrist, can help you learn what to expect, think about what success means for you, and how surgery may affect your life.
Here are some important questions that people with epilepsy and their families should ask their epilepsy care team:
- What makes me a good candidate for surgery?
- What are the surgical options available to me? What type of surgery do you recommend?
- What are the risks of continued seizures if I don't have surgery?
- What is the likelihood of becoming seizure free from surgery?
- If I am not likely to be seizure free, what changes in seizures (number or severity) may be realistic?
- What are the potential risks and side effects associated with the surgery being recommended?
- How long will I be in the hospital?
- How long will recovery take and are there restrictions on what I can do?
- How will the surgery affect my quality of life? How will long-term changes in seizures affect my quality of life?
- What are the chances that I can lower or stop all my anti-seizure medications after surgery?
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