Patty Shafer, RN, MN
Epilepsy.com Resource Specialist
When a person begins to consider epilepsy surgery, they are taking a big step in their epilepsy journey. They aren’t committing to having surgery, but to finding out as much as possible about their epilepsy, including whether or not surgery is possible. During this process, a person may find out reassuring news about where their seizures are arising and that surgery could offer a chance for seizure freedom. However, people should also be prepared to hear difficult news, for example that surgery isn’t possible because of where the seizures are coming from or that surgery may lead to too many risks for that person.
Who should consider epilepsy surgery? Anyone who has seizures that are not controlled with trials of at least two appropriate seizure medicines should talk to an epilepsy specialist about what other options may be available. There are also neurological problems that cause seizures, or specific types of epilepsy, that are not likely to be controlled with medicines. Surgical evaluations could help better understand these situations and available options.
Also, people who have side effects from their medicines or treatments that are interfering with their functioning, general health, or quality of life should relook at their situation. Are there other medicines that could be tried and not cause side effects? Are there other problems affecting their health and quality of life? These questions should be addressed before considering epilepsy surgery.
Where should I go to be evaluated for epilepsy surgery? Neurologists who specialize in epilepsy are called epileptologists. Some epileptologists may provide diagnostic and medical services, while others may provide surgical evaluations and care, and other treatments for epilepsy. People who want to consider epilepsy surgery should be seen at an epilepsy program, also called a Comprehensive Epilepsy Center that provides medical and surgical services and has a range of health care professionals in epilepsy. Make sure the center or program you go to has epileptologists, nurses, neurosurgeons, neuropsychologists, radiologists, EEG technologists, as well as social work and psychiatry at the least. Ideally epilepsy centers should have resources or relationships with employment specialists and community services to help people address the non-medical problems that often accompany epilepsy. To find an epilepsy center, visit the National Association of Epilepsy Centers at the Find A Center button on www.epilepsy.com.
What happens during a presurgical evaluation? At most epilepsy centers a presurgical evaluation isn’t done at one point in time. There will likely be appointments in the outpatient setting where you will meet with an epileptologist (neurologist specializing in epilepsy), neurosurgeon, and epilepsy nurse. You may be scheduled for some outpatient EEG testing, brain scans, neuropsychology testing or other evaluations.
EEG video telemetry is a critical test done to record the person having a seizure and find what area of the brain the seizure starts from and where it may spread. A person is admitted to an epilepsy monitoring unit for this testing. Audio and video recordings of the seizures are put together with the EEG recordings to see and hear what happens during a seizure. This information helps sort out if the event was an epilepsy seizure and what part of the brain may be involved.
If video EEG telemetry doesn’t not find the beginning of the seizures, the epilepsy team may recommend that EEG telemetry be repeated with electrodes placed into or on top of certain areas of the brain. This type of testing requires surgery to place the electrodes and requires more time and commitment from the person with epilepsy and their family. However, it can also provide more accurate information about whether a person would be a candidate for epilepsy surgery.
What can people do to prepare for a presurgical evaluation?
There are lots of things people can do to get ready for a presurgical evaluation. Here are a few of my thoughts.
- Ask lots of questions at every step along the process. All questions are good questions! If the doctor or health care provider doesn’t know the answer, ask again. However, keep in mind that answers to many questions need to be individualized considering each person, their seizure experience, and a host of information gathered during the testing. This means that the answer for you may be different than the answer for someone else.
- Don’t make a decision to have surgery until you have all the information. The decision is yours to make and you don’t need to rush into it.
- Use family, friends or other support persons to help you through this! They have been going through this with you, in different ways, so use them to help support you and provide help along the way.
As you prepare for a surgical evaluation, ask yourself the following questions.
--- How is epilepsy affecting my life the most?
---What do I hope to change as a result of having surgery?
---How will surgery change the way epilepsy affects my life?
---Are my goals and expectations for surgery realistic?
Start by talking about these issues with an epilepsy nurse and counselor, and make sure your epilepsy doctors know how you and your family feel. The answers to these questions may be different for a family member or partner. Have them answer the questions too, and talk about the issues together. There are no right or wrong answers, but the issues these questions raise will help you think about whether surgery is right for you and how you may need to prepare for the surgical process and life after surgery.
In future columns, we’ll talk about the practical aspects of preparing for surgery and life after surgery. Please feel free to send in your thoughts, questions and experiences! I’d love to share experiences of people who have had surgery!
Best wishes and have a safe week!
by Patricia Osborne Shafer RN, MN
Resource Specialist, epilepsy.com
Last Reviewed: 10/24/2012
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