UW Health Comprehensive Epilepsy Services
Kate Ford Roberts suffered from epilepsy for over 20 years. Now she's cured. She credits the UW Hospital and Clinics, and its comprehensive epilepsy clinic program.
"I've had no seizures since.''
Ford Roberts was diagnosed with adult onset epilepsy at age 21 while a college student. She continued to have seizures despite drug treatment but figured she could live with it. In the late 1980s, Dr. Thomas Sutula, current chairman of the UW Department of Neurology, first suggested that Ford Roberts would be a good candidate for surgery. But she was afraid of surgery.
"You want to exhaust all medication possibilities,'' she says.
Ford Roberts says she never achieved "total control'' of her epilepsy with medication. By the late 1990s she says the epilepsy was beginning to interfere with her quality of life.
"My memory recall didn't seem as good as it used to be.''
Dr. Paul Rutecki, of the UW Department of Neurology/Epilepsy and director of the Forster Veterans Administration Epilepsy Center in Madison, convinced her to have an evaluation for surgery. Ford Roberts finally agreed to a surgical procedure.
"This was a very well thought-out process,'' says Ford Roberts. When UW professionals told her she had the right profile for surgery and that it would be beneficial for her, "It built my confidence. I didn't feel pressured.''
"People feel helpless," says Sutula. "The needs of patients are so great that if only a couple people end up being helped by surgery, it should be done.''
Ford Roberts, an associate clinical nurse specialist in palliative care at UW Hospital and Clinics, had the built-in advantage of being close to UW Health and its comprehensive epilepsy program. In a community setting, "People aren't going to push you,'' says Rutecki, noting that many suffering from epilepsy need to be evaluated in a more aggressive manner.
"UW offers a more specialized approach,'' Rutecki says. "It's never easy.''
UW Health's advanced technologies and multi-disciplinary team can diagnose and treat people with many forms of the disorder. Much of this care is not readily available in the regional communities.
"It's a bad problem, but a lot can be done about it,'' says Sutula, noting that the interaction of UW doctors with local doctors can be a big positive for patients suffering from epilepsy.
Both Rutecki and Sutula agree that epilepsy is a problem that is both underestimated and misunderstood. Nearly three million people in the United States and 50 people million worldwide suffer from epilepsy. It is the most common neurological childhood disorder in the U.S. and one of the most common in adults. The estimated prevalence of epilepsy is about twice that of Alzheimer's and it is in the same range worldwide as stroke. About 50 percent of patients with epilepsy have seizures despite taking medication.
UW has a long history of cutting-edge epilepsy research, dating to work done by Dr. Francis Forster beginning in the late 1950s. Rutecki is a nationally recognized leader in VA epilepsy care. He recently received a grant to expand treatment for vets with epilepsy, which is a major initiative in the VA system given the increasing problems with traumatic brain and blast injury in the current military conflicts.
Sutula was awarded the William S. Lennox Award in 2009, the American Epilepsy Society's highest honor. The award recognizes his long work in studying the negative effect of epilepsy and of raising awareness of the disease.
In addition, Dr. Karl Sillay, the director of adult functional and stereotactic neurological surgery at UW Hospital and Clinics, manages a lab studying neurostimulation systems for movement disorders, pain and epilepsy, neurosurgical navigation, neuroimaging, and endovascular approaches for functional neurosurgery. On the clinical side, Sillay specializes in the diagnosis and surgical treatment of many disorders of the brain, including epilepsy, and as part of the comprehensive epilepsy program, provides surgical options when medical therapies are unsuccessful.
UW is working in many other ways to provide better care for those suffering from epilepsy. The recent addition of more faculty improves access for patients with epilepsy.
Bruce Hermann and the pediatric epileptologists (Drs. Stafstrom, Hsu, Edelman) received a grant from the NIH American Recovery and Reinvestment Act to continue a study of the natural history of cognitive, brain and behavioral development in children with new onset epilepsy. This prospective study compares healthy controls versus children with epilepsy, age 8-18, and it is the only study of its kind in the world.
Some drugs used to treat epileptic seizures are known to cause cell death in the brain and also prevent new nerve cell development. Dr. Chris Ikonomidou, another pediatric neurologist at UW, is rethinking how such drugs are used in pregnant women and young children. Her laboratory studies have indicated a very immediate effect of these drugs on the unborn fetus. Ikonomidou compares the use of some epilepsy drugs to that of alcohol on unborn babies.
Ikonomidou received the 2009 Michael Prize for Outstanding Epilepsy Research Performed by Young Investigators (under the age of 45). The prize, awarded every two years, is an international award that reflects a body of work. The prize emphasizes the importance of carrying out laboratory research that can be translated into care for patients.
Dr. Ikonomidou's research is focused on understanding how the developing brain reacts to various insults and the identification of ways to protect it. Her research may help optimize therapeutic interventions in infants and children with brain injuries, seizures, neurodevelopmental disorders or cancer.
UW also offers ancillary providers, as part of an evaluation, with UW's neuropsychology group rated as one of the top in the country.
Ford Roberts participated in an NIH research project led by Dr. Hermann that characterized the consequences of chronic temporal lobe epilepsy on cognition, brain structure and emotional status. The findings indicated that ongoing seizures increased the risk of further worsening of memory problems and other cognitive complications along with worsening clinical depression, outcomes that Kate avoided by undergoing surgery.
"Too many people continue with complications of intractable seizures when surgery can have both immediate and long-term positive outcomes,'' says Hermann, professor and director of the Charles Matthews Neuropsychology Lab at UW.
Dr. Jana Jones of the UW's Department of Neurology, division of Neuropsychology, is using a computer-based intervention called Camp Cope-A-Lot' to study children ages 8-13 with epilepsy and anxiety disorders. The study, funded by People Against Childhood Epilepsy, is a cognitive behavioral therapy using no medication.
"Cognitive behavioral therapy is often recommended as the first line of treatment for kids with anxiety,'' says Jones. She recognizes that many parents are hesitant to start medications for anxiety.
The study consists of 12 one-hour visits to UW Hospital, utilizing an interactive computer program that teaches children coping and problem solving skills to help manage their anxiety, worries and fears.
"The kids like the study,'' Jones says. "Not only are they learning, but they have fun with the computer games and rewards through the study.''
There is a commitment involved, and it's often not convenient for families to make 12 trips to Madison. But Jones notes that one family, from northern Illinois, says there are limited opportunities in their area so they are more than willing to travel. They recognize that distance shouldn't be the determining factor in seeking the best care available.
In Ford Roberts' case, she traveled a short distance to come a long way. "I'm really grateful to the UW Health system for the care I received.''
The result says it all.
To refer a patient, please contact the appropriate clinic:
- UW Health Neurology: (608) 263-5442
- UW Health Neurosurgery: (608) 263-7502
- UW Health Pediatric Neurology: (608) 890-6500
- UW Health Neuropsychology: (608) 263-5430