Kelly Neuschwanger

Now, the Neuschwangers are filled with a sense of hope that has been missing for years. "These people gave Kelly back her life," says husband Ryan, pictured here with Kelly and daughter Kate.

Taking a walk, crossing a busy street, driving a car, going to work — these are all everyday actions most people don't even think about. But Kelly Neuschwanger hasn't been able to do these things without fear since a snowy weekend in December 1992, her senior year of high school. Kelly awoke that morning with blood in her mouth; she'd bitten her tongue severely during the night. Kelly's parents took her to an urgent care facility, where doctors examined her wound and told her she'd be fine. "No big deal," they said.

But it was a big deal. As her family later learned, Kelly had experienced a seizure while she slept. And it wasn't an isolated incident. As the months went on, Kelly's normal life was curtailed by fear of having more seizures, especially in public. Her family couldn't stop the seizures; they could merely protect Kelly when they happened. It took nine months of doctor visits and medical examinations before Kelly was ultimately diagnosed with epilepsy.

"How much worse?"

Epilepsy is a seizure disorder affecting over two million Americans of all ages, with approximately 200,000 new cases diagnosed each year. In persons with epilepsy, the brain's electrical signals become disrupted, resulting in seizures of varying degrees, including everything from a staring spell or temporary confusion, to collapsing, loss of consciousness, and uncontrollable, jerking movement of the arms and legs.

Epilepsy may result from an accident, disease, medical trauma such as a stroke or tumor, or an unknown cause. The condition is diagnosed through a variety of ways including neurological examinations, blood tests that look for chemical imbalances, recordings of the brain's electrical activity, and computerized tomography (CT) or magnetic resonance imaging (MRI) scans to look for brain abnormalities such as tumor, cysts, or tangled blood vessels.

Kelly's doctor prescribed various medications to treat the epilepsy, and for two years the condition remained more or less under control. But in August 1998, after Kelly graduated from college, the seizures recurred with a vengeance. Kelly would endure as many as 12 or 13 seizures a month, usually occurring in clusters. Although her doctors tried different medications and varied dosages, they were unable regain control.

Despite the frequent seizures, Kelly continued trying to live a normal life, including working as a teacher at a local community college, getting married to husband Ryan and giving birth to their daughter Kate. But by 2004, it had become clear to Kelly and her physicians that medication was not an effective treatment. "All the whole family thought about is, 'When is the next seizure coming?'" says Ryan. "'How much worse is this going to get before it gets better?' And we had almost reached the point where we thought it would never get better."

An Accurate Diagnosis

In some patients with epilepsy, surgical treatment may be possible if medication proves to be ineffective. For surgery to be effective, the seizures must originate from an exact location in the brain; usually in the temporal or frontal lobes, and not in an area that controls vital bodily functions.

Kelly's neurologist referred her to Dr. Joseph Sirven, a neurologist and epileptologist at Mayo Clinic in Scottsdale, Ariz. "I was afraid," Kelly recalls. "It was pretty scary to think about having brain surgery. I was a nervous wreck."

But when Kelly and Ryan arrived at Mayo Clinic in May 2004, their outlook changed. "The doctors were very clear in what they said, and were clearly working toward Kelly's best interests," Ryan recalls. "That was very reassuring for all of us."

Kelly's treatment team expanded to include Dr. Richard Zimmerman, a physician and surgeon in Mayo Clinic's Department of Neurological Surgery. Both physicians agreed that Kelly's case was difficult and unusual. "You usually see some type of scarring or abnormality, atrophy or shrinkage on the sick part of the brain that indicates where the seizures are coming from," Dr. Zimmerman explains. "But in Kelly's MRI, what we saw didn't fit with her seizures."

The MRI scan of Kelly's brain had revealed a cavernous malformation, or cluster of abnormal blood vessels, on her cerebellum. Cavernous malformations may result in seizures, "which is something that physicians often hinge their diagnosis on," Dr. Sirven explains. But close examination showed the cavernous malformation was not the cause of Kelly's condition. "It was not a straightforward solution," Dr. Sirven says.

Thanks to the care of Mayo physicians, "I can finally walk outside and be myself," says Kelly, pictured here with Dr. Joseph Sirven, one year after surgery to correct epilepsy.

To make an accurate diagnosis, Dr. Sirven and Dr. Zimmerman decided to use a new imaging technology called SISCOM (Subtraction Ictal SPECT Co-registered to MRI), developed by Mayo Clinic to precisely pinpoint seizure hotspots in patients with epilepsy and provide better surgical treatment options. Mayo Clinic in Arizona is one of only 12 centers in the world with SISCOM and the only facility in the southwestern U.S. with this diagnostic option.

SISCOM diagnosis requires the patient to be admitted to the hospital for one week to be monitored 24 hours a day. When a seizure occurs, a tracer, carrying a small amount of radioactivity, is immediately injected into the patient. A scan is taken showing a collection of the tracer, which tags red blood cells at the site in the brain where the seizure originated. A second scan is taken 24 hours later while the patient is seizure free. The two scans are then compared to confirm the seizure hot spot.

Since differences between the two scans are difficult to detect with the human eye, a computer program developed by a team of Mayo Clinic physicians and scientists electronically subtracts one image of the patient's brain from the other image, leaving a clear picture of the seizure hot spot. The subtracted image of the brain is then superimposed onto an MRI scan to map the hot spot's physical location, which in Kelly's case was her left temporal lobe.

SISCOM is a non-invasive procedure that gives physicians an initial localization of a seizure hot spot. But to confirm the SISCOM findings, the treatment team may choose to readmit the patient to the hospital and implant electrodes into the brain to monitor seizure activity. If the results of the electrode test match the SISCOM findings, then doctors know precisely where to operate.

For 14 days, Kelly was carefully monitored, and each seizure was recorded. These tests confirmed that Kelly's seizures were originating from a specific area of the left temporal lobe. Using this precise map and electrical recordings to monitor brain activity, Dr. Zimmerman was able to successfully remove the area of Kelly's brain that caused the seizures.

"A Sense of Hope"

Kelly has been seizure-free since her surgery in July 2004, and her life has changed as a result. "I can finally walk out the door and go anywhere I want," she smiles. "It was a hard way of life for a long, long time, to have on my mind 24-7, 'Am I going to have a seizure? Is anyone going to see me? What's going to happen?' It's great now to be able to walk outside and be myself."

Kelly's back teaching at the community college, and she's more confident than ever in front of her students. But perhaps the biggest transformation is in her role as mother to 4-year-old daughter Kate. For the first time ever, Kelly can truly enjoy play time, ballet lessons, and story time at the local library. "I feel like I'm a whole different person with her now," Kelly says.

"I am very grateful to my husband, my parents and brother, and everyone who kept me in their prayers," she continues, looking back over the past decade. "They saved me. And I'm especially thankful to Dr. Sirven, Dr. Zimmerman and everyone else at Mayo Clinic."

"Kelly and the rest of us are filled with a sense of hope that has been missing for years," Ryan says. "These people gave her back her life."