After developing epilepsy as the result of a medical error when she was 13, Debra Iachini-Lux spent the following 30 years of her life wondering when the next seizure would strike.
The Geistown resident did not allow the disease to prevent her from starting a career in medical office management and going on to found her own medical billing and transcription business, Laurel Highlands Medical Consultants Inc.
But the seizures would interfere with her business and her life. She was not permitted to drive a car and sometimes would “zone out” during a client meeting.
“In my darkest days I’d just start talking about something that made no sense,” Iachini-Lux said at the consulting business’s 1407 Eisenhower Blvd. office.
A doctor warned her not to take meetings alone, advising her to bring a colleague to pick up the slack if a seizure struck.
“I would bounce right out,” Iachini-Lux said. “It was mental seizures – not so much shaking and tremoring. That was in my sleep.”
The National Institutes of Health defines epilepsy as “a brain disorder that causes people to have recurring seizures. The seizures happen when clusters of nerve cells, or neurons, in the brain send out the wrong signals.”
Doctors don’t always know what causes the misfires, but they have developed tools and procedures to pinpoint the affected area.
A seizure at an airport during a business trip in 2004 became a turning point for Iachini-Lux. She found herself confused, not knowing who or where she was until a stranger read her plane ticket.
That’s when her doctor referred her to neurosurgeon Dr. Jack Wilberger at Allegheny General Hospital in Pittsburgh, the nearest program offering epilepsy treatment through brain surgery.
After extensive testing, Wilberger determined Iachini-Lux was a candidate for temporal lobectomy surgery.
The goal was to remove a small piece of the brain’s temporal lobe where the seizures originated.
The surgery was a resounding success, Iachini-Lux said, bragging that she has been seizure-free now for eight years.
She has updated Wilberger every year on the anniversary of her surgery. This year’s anniversary fell on the day she left Johnstown to accept the state Business and Professional Women of Pennsylvania’s Employer of the Year Award.
Iachini-Lux credits the surgery with allowing her to excel in business.
Advances in treatment
Her story of overcoming epilepsy is becoming more common, Johnstown neurosurgeon Alfred P. Bowles Jr. said at Memorial Medical Center in Johnstown. Bowles is chairman of the department of neuroscience for Conemaugh Health System and has been performing epilepsy surgery at Memorial for more than six years.
Most patients don’t require surgery, Bowles said.
“The good thing, with epilepsy today, more people are able to have their seizures controlled by medicine,” Bowles said, explaining that 47 percent can be controlled with a single drug, while another 13 percent become seizure-free by using two medications.
Patients who don’t respond to medication can be evaluated for surgery using the latest technology to pinpoint the area of the brain affected, Bowles said, outlining the three-phase presurgical evaluation process.
It begins with placing electrodes on the scalp to determine the type of seizures and area affected. If the seizure appears to be a type that can be treated with surgery, the next phase uses state-of-the-art magnetic resonance imaging and other tests to get a complete picture of the brain and the affected area.
The third phase requires a small hole drilled in the skull to insert electrodes, Bowles said. The leads monitor activity and pinpoint the seizure area.
Iachini-Lux’s temporal lobectomy is still the most common epilepsy surgery. It is used when a small, clearly identified, area of the brain is affected.
If the seizure-causing misfires of brain signals affect larger areas, there is the functional hemispherectomy. In this operation, the surgeon “disconnects” two areas of the brain.
Although classified as brain surgery, another epilepsy treatment does not include the removal of tissue.
Vagus nerve stimulation sends regular, mild pulses of electrical energy to the brain through the vagus nerve, which is also called the wandering nerve because of its extensive connections in different areas of the brain, Bowles said. The pulses are supplied by a device implanted by the surgeon, not unlike a heart pacemaker placement.
“It is like a super-strong medication,” Bowles said. “It raises the seizure threshold of the brain. We don’t know exactly why it works.”
Types of epilepsy
Epilepsy can strike at any age, but seizures usually begin between ages 5 and 20.
In young children, febrile seizures, caused by high fever, are the most common type, Bowles said. Although many children have the seizures, or convulsions, it is rare that they lead to epilepsy in adulthood.
For onset between age 10 to 20, there is usually no apparent cause for epilepsy, Bowles said. Many believe there could be a genetic component.
In young adults, head injuries and drug abuse are the most common causes, while strokes become the main culprits after age 60.
Whatever the age or cause, Bowles stressed, there is hope in both current and developing treatments.
“We have done better with more technology and better techniques,” Bowles said.
High-power microscopes through cameras on endoscopes, or tiny lead, fed into areas of the brain allow pinpoint surgery with less risk of damage to other tissue, Bowles said.
“We can see the microscopic detail of the brain,” Bowles said. “With the endoscope, we can actually visualize it. It can take us to rather small areas of the brain that we wouldn’t have been able to reach.”