Unlocking Secrets of the Brain
For many of her childhood years, 39-year-old Kim Jansen kept a secret. She was different from her friends, but she wasn’t sure why.
Throughout her childhood, she would fall into what she called “out of body experiences.”
“I could see and hear things going on around me,” recalls Jansen. “People could talk to me, but I couldn’t talk back. I told my dad once and he told me I was crazy and to go back to playing. I didn’t want my friends to think I was strange so I didn’t tell anyone else.”
The spells would come in bursts. She might have several episodes a day for a week or so, and then not have any for several weeks. Several times, Jansen had seizure episodes that were severe enough to send her to the hospital. But seizure disorders were not well understood then and she never received a diagnosis for the strange episodes. It wasn’t until Jansen was 18 years old that she was finally diagnosed with epilepsy.
Estimated to occur in as many as 25,000 individuals in Nebraska alone, epilepsy is defined as the tendency to have recurrent, unprovoked seizures (which are temporary, abnormal changes in brain electrical function) that affect awareness, movement or sensation.
Depending on the origin of the electrical malfunction, epilepsy can cause a wide range of symptoms including recurrent episodes in which patients involuntarily scream, laugh inappropriately, fall to the ground in convulsions or lapse into an unconscious stare or state of confusion. Tremendous strides have been made in achieving a better understanding of the disease. It occurs most commonly in two groups: young children born with the disorder and elderly adults due to degenerative diseases. However, epilepsy can occur in any age. We also know that it is often related to prior medical episodes like stroke, a severe head injury, concussions, brain tumors, infections to the brain and, in some cases, genetics.
The treatment of epilepsy has flourished in the past decade and The Nebraska Medical Center has been on top of the curve.
“Seizure freedom is no longer the exception but the expectation,” says Deepak Madhavan, MD, epileptologist and medical director of The Nebraska Medical Center Epilepsy Program. “The landscape has changed dramatically over the last 15 years due to newer medications, more advanced diagnostic tests and more precise surgical techniques. Through medications, surgery or a combination of the two, we can reduce or completely eliminate seizures in more patients currently than even compared to a few years ago.”
Dr. Madhavan is just one of three epileptologists in the region — physicians who specialize in epilepsy. A Nebraska native, Dr. Madhavan attended medical school at the University of Nebraska Medical Center (UNMC). He completed his residency at the University of Iowa in Iowa City and completed fellowship training at New York University in Manhattan, one of the leading epilepsy training programs in the country.
The Epilepsy Program, the only comprehensive epilepsy center of its type in the region, diagnoses and treats epilepsy patients using some of the most advanced diagnostic and treatment tools available, conducts research on epilepsy diagnostic tools and treatment and educates physicians and patients about this widely misunderstood disease.
The closest centers of its kind are located in Cleveland and Minneapolis. “People come from all over the region to see us,” says Dr. Madhavan. “More recently, we’ve been seeing an increasing number of children with epilepsy.” Dr. Madhavan says the program is in the process of recruiting a pediatric epileptologist so those in the community do not have to travel such far distances to get care.
While the treatment of epilepsy has seen great strides, awareness of this unpredictable and misunderstood disease has not kept pace.
“Unfortunately, there are still many cases in which people with epilepsy are still told that they just have to live with seizures,” says Dr. Madhavan, “But that is just not the case. There is a whole new generation of medications that have been introduced in the last 15 years that are more effective, much safer and have fewer side effects.”
Individuals who continue to experience seizures despite treatment are probably being treated with some of the older medications, which also carry a lot of chronic side effects, notes Dr. Madhavan. The type and combination of drugs prescribed for each individual depends on the specific type of epilepsy and its point of origination in the brain. “We can evaluate these patients, do specialized testing if necessary, and make sure they are taking the appropriate medications,” he says.
“This can make a significant difference in managing their seizures. Sixty to 70 percent of patients can become seizure-free on the proper medications. The remaining 30 to 40 percent will need surgery combined with medications. Approximately 10 percent of surgery patients will see significant improvement but may still experience some seizures.”
Children, who comprise one of the largest groups of epilepsy victims, often reach adulthood before being diagnosed.
“While that is beginning to change, it’s still not uncommon for children with epilepsy to be labeled with attention deficit disorders like ADHD and go years before being diagnosed with epilepsy,” says Dr. Madhavan. Early diagnosis and treatment is important to prevent the disease from progressing and causing long-term side effects. Untreated, recurrent seizures can cause progressive changes to the brain, and this can result in seizures becoming more frequent, more severe and more difficult to treat. Such was the case for Jansen who had endured more than 35 years of seizures before getting help at The Nebraska Medical Center's Epilepsy Program.
When Jansen was referred to Dr. Madhavan several years ago, he immediately began performing a series of specialized testing to determine the source of Jansen’s seizures.
Once on the appropriate medications, Jansen began to see immediate improvement in her seizure frequency. However, the progressive nature of the disease had caused a level of resistance to medications, making Jansen’s condition more difficult to manage. She also experienced frequent and numbing headaches. Dr. Madhavan laid out her options: stay on medications and live with occasional seizures or undergo surgery that could completely or nearly completely eliminate the seizures. Not ready for surgery, Jansen chose to stay with medications.
That’s when Jansen’s life really turned upside down. On the 4th of July while driving her son home, the worst happened — Jansen had a large seizure. “I remember feeling a little weird, so I began to pull over,” recalls Jansen. And that’s all she remembers. Jansen’s vehicle ran into the bed of a truck on the side of the road. Fortunately for her, neither she nor her son was hurt badly. However, Jansen lost her driver’s license for three years.
"It was terrible,” says Jansen. “I felt like I had lost all independence. I had to be driven everywhere — to work, my son’s sporting events, grocery shopping, errands.” It was enough for Jansen to reconsider the surgical options presented by Dr. Madhavan.
“In Kim’s case, the electrical circuit in the brain had become very widespread,” says Dr. Madhavan. “The longer you have epilepsy, the more it can spread. Our goal was to go in and remove the main ignition points.”
Dr. Madhavan started by performing long-term video electroencephalography (EEG) monitoring to record the electrical activity of the brain. This allowed him to determine the primary ignition points of Jansen’s seizures. This was followed by additional testing, which ensured these areas of the brain could be successfully removed without affecting Jansen’s cognitive functioning. In July of 2009, Michele Aizenberg, MD, a neurosurgeon at The Nebraska Medical Center, performed a temporal lobectomy, which involves removal of a portion of the temporal lobe of the brain.
Within four weeks, she had returned to work part time and was working full time two weeks later. Jansen’s headaches disappeared and she was seizure free.
And the best part, by January 2010 with six months of seizure freedom behind her, Jansen was able to get a valid driver's license.
“I feel so much better and I am so much happier,” says Jansen. “For three years, I was a mean wife, I was depressed and just unhappy. I cried a lot and there were times when I threw things across the room because I was so frustrated. Now I’m back to being myself again. I would recommend this surgery to anyone.”
Word is spreading. Dr. Madhavan says he performs about 15 to 20 of these surgeries a year and those numbers are starting to increase. “People have been inspired by the success of our surgery patients,” he says.
Jansen also had some nice words for Dr. Madhavan. “I love Dr. Madhavan,” she says. “He’s been such a great help. You can talk to him anytime. He is always available and willing to listen.”
The future continues to look promising for the treatment of epilepsy. There are many new medications and therapies on the near horizon, says Dr. Madhavan. One of these is the responsive neurostimulator system that involves implanting a computer chip into the brain that can detect and prevent seizures. Another involves a drug delivery pump that is implanted onto the brain and sprays medications directly on the area of the brain that causes seizures.
Still another new therapy involves magnetic stimulation of the brain called transcranial magnetic stimulation. This therapy inhibits the seizure source and stops seizures from occurring for a week or more at a time.
“This is a really exciting era,” says Dr. Madhavan. “Treatments continue to evolve from surgery to more non-invasive technologies. We have a lot to look forward to over the next five to 10 years.”
The magnetoencephalograph (MEG) scanner is helping medical experts at The Nebraska Medical Center’s Epilepsy Program unlock new secrets of the brain in ways not possible before. In 2008, The Nebraska Medical Center became one of only about a dozen medical centers in the country to add the MEG scanner to its arsenal of diagnostic and treatment tools for epilepsy and other neurologic disorders. The MEG uses magnetic fields generated by the brain’s neuronal activity to detect brain activity with greater detail and accuracy than previous testing tools. By allowing doctors to identify exactly where the brain is malfunctioning, the MEG improves doctors’ ability to diagnose and treat the disorder with the appropriate medications and provides greater surgical precision when removing the lesion becomes necessary.
“This is the most advanced tool available for noninvasively localizing brain function,” says Deepak Madhavan, MD, epileptologist and medical director of The Nebraska Medical Center’s Epilepsy Program. Dr. Madhavan, who joined the Epilepsy Program team in 2007, completed fellowship training at New York University, which focused on use of the MEG scanner to improve the diagnosis and treatment of epilepsy. During his training, he participated in approximately 200 surgeries using the MEG. “My specialized training in MEG allows us to offer a full complement of MEG-guided epilepsy surgery,” he says.
With the assistance of MEG technology, Dr. Madhavan is able to locate the precise ignition point of seizures. He then works with a team of neurosurgeons to provide targeted epilepsy surgery, which involves removing parts of the brain that are triggering the seizures. To ensure critical areas like speech and body movements will not be affected through surgery, Dr. Madhavan performs intracranial monitoring, which involves moving a flap of the cranial bone and placing electrodes directly on the brain to further pinpoint the seizure focus.
“The MEG scanner is continually improving our ability to diagnose and treat epilepsy with greater precision,” says Dr. Madhavan. “We expect its use to increase as we continue to perform more complex surgeries at our center.”