Epilepsy centers deliver specialized, coordinated care that may help control seizures and improve quality of life for people with epilepsy and their families. Jerome Engel Jr., M.D., Ph.D., Jonathan Sinay Distinguished Professor of Neurology, Neurobiology, and Psychiatry and Biobehavioral Sciences, and director of the UCLA Seizure Disorder Center, explains what these centers offer.
Who should consider visiting a specialized epilepsy center?
Any patient who has “drug resistant epilepsy.” That’s anyone who continues to have disabling seizures after appropriate trials of two antiseizure drugs, which is up to 40 percent of people with epilepsy. These patients deserve to have an evaluation with a team of experts, and I stress the word “team.” Centers have not just neurologists but also neurosurgeons, neuropsychologists, neuroradiologists, psychiatrists, counselors and social workers, all of whom are trained specifically to help.
If a patient hasn’t responded to two antiseizure drugs, the chance that they’ll respond to an additional drug is only 3 to 5 percent, and the longer they wait, the harder it may be to get seizures under control. Yet, only 1 percent of people with drug resistant epilepsy are referred to an epilepsy center, mostly, I think, because there’s a misconception among both doctors and patients that all these centers offer is surgery. That’s not true.
What kind of care do centers provide that general neurologists aren’t equipped to offer?
The first thing that happens is one or two doctors and maybe a nurse specialist will take a detailed history, including a description of seizures, from the patient and a significant other. Then the team will go through all the tests, data and medications that have been used; often there’s a solution just from this process. For example, there may be issues with the dosage of drugs or the way they’ve been administered. Patients may not be taking their medication because of side effects that we can avoid by using different drugs or different combinations of drugs, or they may have lifestyle issues that cause seizures.
If the answer isn’t there, we do additional testing with imaging technology that’s specifically designed to identify causes of epilepsy. Many patients may benefit from inpatient EEG video monitoring, which can reveal that some actually do not have epilepsy and require a different type of treatment. Centers also offer access to a variety of treatments that do not involve surgery. There are always new options coming out—centers offer them. Centers can also determine if patients are candidates for surgery; we find many people who’ve been told by their physicians they aren’t surgical candidates, but when we see them, they are.
What if you don’t live near an epilepsy center?
There are epilepsy centers strategically placed all over the country, so most patients are within a reasonable distance of a center. Remember, centers provide an expert second opinion about what the disease process is and what additional treatments are available; we do those evaluations and refer patients back to their local doctors with instructions for ongoing treatment.
If they can, people should try to go to a full-service epilepsy center (level 3 or 4, in the National Association of Epilepsy Centers ranking system). If there’s no full-service center nearby, but there is a level 1 or 2 center, they should try that first. If they don’t get results, however, they should insist on being referred to a level 3 or 4 center.
Find an Epilepsy Center
To learn more, visit the National Association of Epilepsy Centers: naec-epilepsy.org
Jerome Engel Jr., M.D., Ph.D., is a professor at the David Geffen School of Medicine at UCLA, chief of Epilepsy and Clinical Neurophysiology at the UCLA Center for the Health Sciences, director of the UCLA Seizure Disorder Center and a member of the Brain Research Institute. He has received a Fulbright Scholarship, a Guggenheim Fellowship and the Javits Award from the NINDS, among many other honors.
Originally printed in EpilepsyAdvocate, Winter 2016