Shedding New Light on Epilepsy
Since ancient times, man has been seeking to understand the inner workings of the human brain. Weighing in at about three pounds with an estimated 100 billion cells, the human brain still remains a mystery in many respects. With no moving parts, no joints or valves, it reveals little to us from the outside, but yet it is vital to almost everything we do. It not only serves as the logic board for all of the body’s functions, it defines who we are and our sense of existence.
Director of Nebraska Epilepsy Center
To understand its complexity, if we took all the phones in the world and all the wires (there are over four billion people on the planet), the number of connections and the trillions of messages per day would not equal the complexity or activity of a single human brain.
Even with all of today’s advanced technology, the complex nature of the brain still eludes scientists in many ways. But we are making great strides. While there is still so much to know, scientists and medical experts have learned more about the brain in the last few years than they have in the last 400 years. New advancements in imaging techniques such as MRI, PET and SPECT scans have opened the brain to us like never before and they are helping us find answers to treating some of the most difficult disorders that originate in the brain.
The second most common disease state that affects the brain is epilepsy, falling just behind stroke. Understanding the function and developmental processes of the brain is critical to the treatment and management of epilepsy. This knowledge has resulted in a plethora of new and better medications and innovative treatment options.
One of the latest technological advances that stands to have a profound impact on epilepsy and all neurological conditions is the magnetoencephalograph (MEG) scanner. “This is the most advanced testing tool for brain function that is known to man,” says Sanjay Singh, MD, epileptologist (physician who specializes in the diagnosis and treatment of epilepsy).
“I always have been interested in the brain right from the start in medical school. The cortex of the brain is what makes each of us uniquely human. This new technology will give us the opportunity to study the brain and learn more about how it functions than previously possible.”
As one of about a dozen sites in the country to have a MEG scanner, its impact is expected to be felt in both clinical and research settings in the fields of neurology, neurosurgery and psychiatry at The Nebraska Medical Center. The MEG – a neurophysiologic technique that measures magnetic fields generated by the brain’s neuronal activity – can detect brain activity in much greater detail and with more accuracy than previous testing methods. For instance, if a person moved his finger, the MEG would allow doctors to see what part of the brain told the finger to move, notes Dr. Singh.
This kind of view into the brain will provide doctors the ability to identify where the brain is malfunctioning with increased precision; it will provide neurosurgeons greater precision when operating; and, it will allow psychiatrists a better understanding of how the brain functions in those with mental disorders.
“From a neurological standpoint alone, the implications of having a MEG here at the medical center are immense,” says Pierre Fayad, MD, chairman of the Department of Neurological Sciences.
Hope is Here
To thousands of people across Nebraska and nearby states, Sanjay Singh, MD, signifies hope. In some cases, he is their only hope for a chance to restore normalcy to a life otherwise tainted by frequent and unpredictable lapses in which they lose total control of their bodies, but they remember hardly anything about it.
These individuals, as many as 25,000 in Nebraska alone, suffer from epilepsy, a seizure disorder described as a chronic medical condition produced by temporary changes in the electrical function of the brain, causing seizures that affect awareness, movement or sensation.
Dr. Singh, who specializes in epilepsy, calls it an electrical storm that ignites in certain areas of the brain. Depending on the location of the storm, it 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.
Epilepsy patients and their families in search of answers and help, call Dr. Singh’s office by the hundreds. They come from all parts of Nebraska, western Iowa, South Dakota, Kansas, Missouri, Colorado and Wyoming. There are not enough hours in the day, or days in the year for Dr. Singh to see them all.
Dr. Singh is one of just three epileptologists (physicians who specialize in the diagnosis and treatment of seizure disorders) in the state and is director of the Nebraska Epilepsy Center, the only epilepsy center in the region.
The center currently follows more than 3,500 patients. “When we opened, we thought we would slowly build up,” says Dr. Singh. “But word spread fast and the flood gates opened. Many of these patients and families are desperate for help.”
Located at The Nebraska Medical Center, the Nebraska Epilepsy Center diagnoses and treats epilepsy patients using some of the most advanced diagnostic and treatment tools available, conducts research on epilepsy diagnostics tools and treatment and educates physicians and patients about this often difficult to diagnose and widely misunderstood disease.
With Dr. Singh’s commitment and leadership, the Nebraska Epilepsy Center has received national certification as a level four epilepsy center from the National Association of Epilepsy Centers – the highest designation possible. To qualify as a level four epilepsy center, the center must provide the most complex forms of intensive neurodiagnostic monitoring, as well as extensive medical, neuropsychological, psychosocial treatment and surgical treatment options.
“When I came to The Nebraska Medical Center, I saw this as a great opportunity to build a center from scratch,” says Dr. Singh. “It takes a multi-disciplinary team of physicians and healthcare professionals working together for the good of the patient. Everyone was very positive, helpful and supportive. All the elements for success were there.”
This success was evident to Deepak Madhavan, MD, who recently completed his training in epileptology at New York University and joined Dr. Singh’s practice last fall.
“When I saw what Drs. Singh and Fayad were doing, I knew that I wanted to come here,” says Dr. Madhavan. “I was impressed with their willingness to innovate and a ‘can-do’ attitude that you don’t find just anywhere. Dr. Singh has done tremendous things for many epilepsy patients and for the state of Nebraska in a very short period of time. I look forward to being a part of that success.”
For hundreds of years, epilepsy was a condition that was difficult to treat and poorly understood. It wasn’t that long ago that people labeled these individuals as having hysteria or mental illness or being possessed by the devil. That has all changed. Tremendous strides have been made in achieving a better understanding of the disease. Today, we know that the majority of new cases develop in the elderly after age 65. Doctors also know that it is often related to prior medical episodes like stroke, a severe head injury, concussions, brain tumors, infections of the brain and in some cases, genetics.
The treatment of epilepsy has also flourished in the past decade. New medications and advances in treatment can now provide complete elimination of seizures for 65 percent or more of patients. For instance, today there are 14 medications with 10 more soon to be released. That compares to just four medications 10 to 15 years ago.
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. The challenge is that most people are being treated by their primary care doctor who may not be up-to-date with the latest treatment advancements and appropriate drug combinations. In addition, epilepsy can be very difficult to diagnose. There are innumerable variations of the disease that will affect treatment. In its most subtle form it may only manifest itself in a blank stare, rapid blinking or a dazed appearance. As a result, many people may have epilepsy and not even know it. Some are being treated for something other than epilepsy.
Take Clara Peek of Beatrice, Neb., for instance. Peek went 16 years without a definitive diagnosis and little or no relief from the recurrent symptoms of epilepsy. She would pass out and fall to the ground, become unresponsive or slip into a blank stare. “My doctor kept switching my medications, but nothing seemed to help,” she says. “It was very embarrassing and frustrating. I never felt like doing anything because I was too ashamed. There was a lot in my life that was being neglected because I just didn’t have the energy or ambition.”
All of that has changed. Peek’s symptoms have been completely eliminated since she began seeing Dr. Singh in 2003. Dr. Singh diagnosed her condition and put Peek on the appropriate medications. With her symptoms under control, Peek soon began working at the Salvation Army, started driving again, doing her own housework and yard work and recently remarried. “Now I have lots of ambition and a whole different outlook on life,” says Peek. “I am much more confident, happier and outgoing. Dr. Singh straightened things out. I am so grateful to him.”
Opening the doors to a new life for patients like Clara Peek is what helps feed Dr. Singh’s commitment to epilepsy.
“The most gratifying part of being in this field is that you feel like you’ve really performed a service and helped someone,” says Dr. Singh. “It really makes me look forward to coming to work every day.”
The future holds much promise for epilepsy patients. For those 10 to 15 percent of patients who do not respond to medications or surgical options, many new medications and therapies are emerging on the near horizon, says Dr. Singh.
“This is a very exciting time to be in the field,” says Dr. Singh. “There have been so many advances in diagnosis and treatment and there is so much promise for the future of this disease. It is very rewarding to be a part of a field in which you can have such a profound impact in the lives of so many people.”
Knowing that there are so many people who need help, and so many who can be helped, is what drives Dr. Singh to take his crusade across Nebraska and halfway around the world to his roots in India where he both teaches and provides much needed diagnosis and treatment to epilepsy patients.
Dr. Singh considers education a part of his mission. He has to, he says, if he wants to make a dent on the thousands of patients awaiting treatment in Nebraska and the surrounding states. “There is a large percentage of patients who are not getting adequate treatment,” he says, “due to the lack of knowledge in this country and around the world about this disease state.” Dr. Singh provides 15 to 20 lectures a year to physician audiences across the state, with the goal of arming them with the knowledge and medical know-how to go home and provide proper diagnosis and treatment to epilepsy patients in their communities.
A shortage of epileptologists is a problem worldwide. In India, for instance, there are just 10 trained epileptologists in a country of 1 billion people and an estimated 10 million people with epilepsy.
Dr. Singh returns to India every year for about two weeks to see patients and educate the medical community. He is working on plans to start an epilepsy camp where he will see patients without charge for a week at a time. His dedication to the field and to his country recently earned him a high distinction in India – the Hind Rawttan Award – which literally translated means “Jewel of India.” The honor is bestowed on an individual each year on the eve of the Republic Day of India in recognition of that person’s extraordinary service and achievements. “I am extremely honored to receive this award,” says Dr. Singh. “It is a truly humbling experience.”
Rising Above Epilepsy
It was what Megan Busing had hoped would never happen.
As she stood in front of her classmates delivering a presentation for nursing school, she suddenly fell into a blank stare. Her right arm began to quiver. She could hear and see others around her, but she could not respond. As embarrassing and humiliating as this episode was for Megan – it would also lead her to Nebraska’s leading epilepsy specialist in the state.
Megan Busing is a beautiful young woman, full of energy and a passion for helping others. From the outside, she appears to have everything going for her: recently married and with nursing school under her belt, she looks forward to starting a family of her own and a career in nursing.
But there is another side to Megan Busing. One that lives under the shadow of epilepsy – a seizure disorder that produces a short-circuit effect in the brain – causing seizures that affect awareness, movement or sensation. The seizure episodes can cause a momentary disruption of senses that leads to unconsciousness and violent convulsions that last for several minutes.
But even more trying, is the random nature of this disorder, which invokes fear, humiliation and embarrassment upon its victims, robs them of their confidence and self-esteem and causes many to shun public places.
For Megan, the most difficult part of the disorder is fear of the unknown: when will it strike again, who will witness it and what will they think?
It’s been a long and challenging road, but Megan is fighting to remove that dark shadow with the support of family, friends and the staff at The Nebraska Medical Center’s Epilepsy Center.
It was 10 years ago that Megan was in the car accident that caused trauma to her brain, leaving her in a week-long coma. Megan was just 14 – a freshman in high school. Determined to rejoin her classmates for her sophomore year, Megan spent most of her spring and summer in rehabilitation to regain her speech, vocabulary and memory and to catch up on the schoolwork she missed those last few months of her freshman year.
“It was a struggle; nursing school was a struggle and it’s still a struggle,” recalls Megan, who continues to battle with short-term memory loss and recall. Megan grew up quickly in those first years after the accident. To accommodate for her memory deficiency, she spent endless hours studying and reviewing notes over and over again. She also tired more easily. While her friends went to parties and sleepovers, Megan often went home too exhausted to partake in typical teenage social events.
Many of her friends didn’t understand. From the outside, she looked perfectly normal. Why couldn’t she do the same things they did? Megan lost old friends, but she made new ones. In the end, her persistence and positive attitude persevered and Megan finished high school with flying colors.
Her mother, Katy Hertzel, an LPN in Lincoln, provided support and encouragement as she watched Megan struggle with her handicap. “I think the hardest part for Megan has been the fact that she looks perfectly normal, she acts perfectly normal, but she has a handicap that you can’t see,” says Hertzel. “She has scar tissue on her brain that will never completely heal that affects her memory. Some people have a hard time understanding that.”
But Megan has learned to deal with adversity and in her special way of finding a positive in the most difficult situations. “In a way, the brain injury was a blessing because it helped me realize what was most important in life at a very early age,” Megan recalls.
With high school behind her, Megan prepared for nursing school. It was about this time that Megan also began experiencing what she thought were panic attacks. She blamed it on nervousness and jitters about starting nursing school. When her mother witnessed one of the episodes, she scheduled a visit with a neurologist. Megan was diagnosed with complex partial seizures – a form of epilepsy that causes temporary lapses in mental consciousness.
Like many epilepsy patients, Megan sometimes experiences an aura – a sort of warning that a seizure is coming on. Her heart begins racing, she becomes short of breath and her mouth goes dry. Then her body shuts down and she loses the ability to function. “It’s hard to explain,” says Megan. “I can see and hear things going on around me, but I can’t respond. It’s like I’m in a zone.”
Megan was given medications to control the seizures, but they weren’t very effective. Megan lived in constant fear that she might lapse into another seizure at any time. “At times, I questioned whether I could get through it,” says Megan. “I didn’t want others to know. I was afraid of what they would think of me.”
And then the worst happened. Megan had a seizure while giving a presentation during a nursing class. She remembers speaking to the class when suddenly her heart began racing. She panicked and tried to go on, but she soon lost all control of her speech and physical functions. Although it was a terrifying and humiliating experience for Megan, it would also be her godsend. Her nursing instructor recognized the symptoms and recommended she see Sanjay Singh, MD, a specialist in the treatment of seizure disorders and director of the Nebraska Epilepsy Center, the only epilepsy center in the region.
While Megan is not seizure-free, (Dr. Singh’s ultimate goal for all of his patients), her seizures have diminished greatly. “When I first went to see Dr. Singh, I was so depressed and frustrated,” recalls Megan. “But Dr. Singh was so caring and reassuring. He spent so much time with me and taught me more about seizures than I ever knew. There are so many factors that can impact seizures – sleep, exercise, stress and diet. Learning about these things have made such a difference in my life.”
Today, Megan works at an assisted-living home, but she aspires to do so much more. Although she has not let go of her dream of practicing nursing and continues to work toward her goal of passing the NCLEX exams (nursing boards), she realizes that a career in hospital nursing may not be realistic. What she does know is that she is called to help others. She has used her experiences and ensuing battle with her brain injury to help others with similar obstacles. During high school, she volunteered at the Madonna Rehabilitation Hospital in Lincoln. For several years, she volunteered for Young Life Partners, a religious organization that promotes faith to junior high and high school students with disabilities. She spends two weeks every summer volunteering at Camp Okizu, a weeklong camp for children with cancer or who have siblings with cancer.
“I have found strength from helping other people overcome their obstacles,” she says. “It makes me realize how fortunate I am when I see others who are so much worse off than me.”
Her ultimate dream: to start a camp for children with brain injuries or seizure disorders. And if that doesn’t work out, a spot on the cast of Megan’s favorite TV show, “Saturday Night Live,” would be OK too, says Megan.
“God has a plan for Megan,” says Hertzel. “What she has gone through has made her a stronger person and has given her so much compassion for others. There is definitely something special in her future.”