Breaking the stigma surrounding epilepsy: How surgery can cure the disorder

A seizure is much more than the stereotypical violent shakes and muscle spasms.  

During a seizure, the brain experiences several bursts of electrical activity that cause symptoms ranging from a loss of awareness to an inability to talk to a tensing or even weakening of muscles, depending on the type of seizure, according to the Epilepsy Foundation. During some types of seizures, parts of the brain can still function normally, while during others, a person may move, see, feel or do things involuntarily.

Some people feel their seizures coming on hours or even days before they hit, experiencing symptoms like dizziness, headache and body pains or blurred vision, collectively referred to as a "prodrome." Still, others experience an "aura" — a sort of warning that alerts them to an oncoming seizure. However, this alert is actually part of the episode itself. The aura may be a change in feeling, sensation, thought or behavior, and it usually happens just before the main part of the seizure itself.

After a seizure, the symptoms don't necessarily immediately cede. A patient may experience memory loss and have a hard time talking or writing. They may feel dizzy and tired, and if they experienced a fall during the seizure, bruising, cuts or other injuries are possible.

Those living with a seizure disorder have to take special precaution, such as abiding by unique state driver's license regulations, but shouldn't feel as if they have to live in the shadows hiding their condition. There are treatment options available to the nearly 3.4 million Americans living with epilepsy.

P. David Adelson, MD, and Angus A Wilfong, MD, believe almost everyone suffering from the disorder can achieve some kind of relief. They run the Barrow Neurological Institute at Phoenix Children's Hospital, where Dr. Adelson serves as its director and chief of pediatric neurosurgery, specializing in epilepsy surgery, and Dr. Wilfong as its associate director and division chief of pediatric neurology, specializing in epilepsy.

"At Barrow, we heal children with neurological disorders," says Dr. Adelson. "We do that so they can live happy and healthy lives." However, the center also treats adults, and Barrow is the only comprehensive epilepsy treatment center in the region, adds Dr. Wilfong.

At the center, Drs. Adelson and Wilfong strive to heal patients with mental and behavioral disorders by offering a variety of treatment options. They say patients with epilepsy have somewhat narrow pickings when it comes to care options.

Patients may seek medications, tailored diets known as the ketogenic diet or brain stimulation therapies, but Drs. Adelson and Wilfong say surgery is may be the next most hopeful recourse toward a cure. It may take two or three cycles of one of the nearly 30 FDA-approved drugs to find the right fit for most patients, and they note medications only work with about 60 percent of patients. If patients exhaust one or two prescriptions, Drs. Adelson and Wilfong recommend patients seek consultation from epilepsy experts. In fact, a brain operation performed by Dr. Adelson known as epilepsy surgery is the only way physicians have of curing epilepsy.

"If you think of all the types of neurologic conditions … Parkinson's disease, ALS [Lou Gehrig's disease], even migraine headaches, we can't cure any of those. The only neurologic condition that we can actually cure is epilepsy and that's with brain surgery," says Dr. Wilfong.

For seizures that only affect a small and accessible area in the brain, the procedure can be done via a small incision in which a laser probe is used to ablate the problematic tissue, Dr. Adelson explains.

"It's when things aren't very clear … when the data doesn't really give us the fine coordinates of where the seizures are coming from … and we don't really know whether that seizure is within a functional area … that we do a 'phase two' surgery," Dr. Adelson says.

If Dr. Adelson can't pinpoint the exact location of the seizures, the surgery involves exposing the brain to place electrodes on its surface or in its depth to monitor a seizure in real-time. Then, surgeons are able to go in and remove any problematic tissues.

Diagnosing a seizure disorder can be fairly straightforward when outward symptoms are present. However, if physicians note abnormal charges on a patient's electroencephalogram without the presence of seizures, determining whether or not they have epilepsy becomes a bit more challenging. Dr. Wilfong advises physicians to refer these patients to epilepsy or neurology specialists as soon as they suspect their patient may be showing signs of a seizure disorder.  

Epilepsy affects one in 26 people, making it the most common neurological disease despite a lack of public awareness, Dr. Wilfong explains, adding that people are more knowledgeable on diseases like Parkinson's, multiple sclerosis or ALS because of celebrities and other public figures rallying around awareness campaigns. He adds there is a wide treatment gap between children and adult epilepsy patients, which he attributes to a lack of such awareness.

Dr. Adelson agrees: "A lot of the adults we see come for epilepsy surgery have had seizures since they were children. And unfortunately, 20 years have gone by and they haven't been evaluated, and it's found they have a small area that could have been removed or could have been treated decades before. That would have saved them an immense amount of hospitalizations and medications and … improved their [quality of life]."

"Epilepsy and people living with epilepsy still live in the shadows," Dr. Wilfong says. But they don't have to, he adds.

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