Only half of people with epilepsy are seizure-free even if they are taking the best anticonvulsant in the correct dosage for them. This “best” regimen is usually a trial and error exercise. Another 30 percent of patients find that anticonvulsant medications improve their seizure control but not completely. Another 20 percent do not respond at all to anticonvulsants and experience frequent seizures.
Children and adults that undergo surgery to treat their poorly controlled epilepsy can find it to be life-changing. Anticonvulsant dosages and drug side-effects can diminish―the medications may even be stopped completely. Patients then feel confident to be alone at home and may even safely drive vehicles. What may surprise people is that brain surgery causes few or no observable side-effects and can lead to improved quality of life. IQ, too, is little, if at all, affected by surgery, and the surgery has been found to have less effect on IQ compared to those only treated with long-term medical therapy. Dan Hurley reviewed this topic in, “Surgery for Pediatric Epilepsy Found to Have Better Outcomes than Medication Management Alone” in Neurology Today, December 7, 2017, page 17-18.
One patient told her personal story in Neurology Now, December 2017-January 2018, page 38. She developed convulsions at age 31. Anticonvulsant medications helped but she still averaged 3-4 seizures per month. Her job as a nursing assistant ended because of the danger her epilepsy posed working with her patients. MRI, EEG and neurological evaluations with further testing suggested her seizures originated in a part of her brain that epileptologists and epilepsy neurosurgeons felt confident that its removal could lessen her seizures or even make her seizure-free. Following her right temporal lobectomy she reported that she has been free of seizures for six years. She is still on medication but at a lower dose. She advocates for her treatment by speaking to patient groups considering surgery.
If uncontrolled epilepsy is your experience you should definitely consider the surgical option. As scary as it sounds, this treatment has been time-tested over decades. The neurological community finds this life-changing option is under-utilized. Discuss this possible treatment with your neurologist. If testing shows that you would be a good candidate, you will probably wonder why it was not recommended before or why you hesitated for so long.
Epilepsy centers that perform this surgery are available throughout the United States and the developed world. If your neurologist believes that you would be a candidate, ask for a referral.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft-cover editions.