Neurosciences Patient Story: Amanda Momberg

Amanda MombergWhen Amanda Momberg was just 8, she suffered a seizure at home.

“The EMTs took her to a hospital and she was then referred to a pediatric neurologist and diagnosed with complex partial seizures (a type of epilepsy),” said her mother, Kathy Momberg. The Mombergs live in Cedarburg, Wis.

Epilepsy is a condition of the brain that makes a person susceptible to seizures. A seizure occurs when nerve cells in the brain fire abnormal and synchronous electrical discharges. This causes an “electrical storm” or seizure in the brain. A person who has two or more unprovoked seizures has epilepsy. The disorder affects more than 100,000 people in Wisconsin, and an estimated 2.7 million people in the United States.

Complex partial seizures affect a larger area of the brain than simple partial seizures. During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions, doesn't know what he or she is doing, and cannot remember what happened during the seizure.

“She started on a medication that controlled her seizures very well, and she only had one seizure a year,” Kathy said. “Then she hit puberty and started to seize about once a month.”

For women with epilepsy, the balance of certain hormones in their body greatly affects the frequency of seizures. Therefore, women with epilepsy face unique health challenges, especially during the onset of menstruation and with fertility, menstrual cycles, pregnancy, menopause and bone health.

Because Amanda was seizing more often during her teens, Kathy turned to the Comprehensive Epilepsy Program at Froedtert & the Medical College of Wisconsin to continue Amanda’s care.

“We saw a neurologist who specializes in women with epilepsy,” Kathy said. “The doctor changed her medications to account for her hormone-related seizures. She did OK, but still had seizures once a month or less.”

In December 2008, Amanda’s world suddenly turned upside down. “She got the flu and started having 60 to 100 seizures a day,” her mother recalled.

Amanda’s persistent seizures greatly restricted her life. “I couldn’t go to school,” she said. “I was on the couch all the time,” she said. “It was very scary — and exhausting.”

“But she was never down,” said Kathy. “She always stayed positive.”

During this time, Amanda and her mother made numerous trips to a local emergency department for “rescue medications” — medications created to stop seizures in progress.

“The seizures would stop for a day or two, but then they returned,” Kathy said.

Then, in January 2009, Amanda was taken to the Emergency Department at Froedtert & the Medical College. By this time, she was taking seven different medications in an attempt to control her seizures.

“She was in status epilepticus,” Kathy said. Status epilepticus — a constant or near-constant state of having seizures — is a health crisis that requires immediate treatment.

Amanda was admitted to the epilepsy monitoring unit at Froedtert for video EEG monitoring, which allows for a continuous record of seizures over several days. The monitoring determines the type and focus (location in the brain) of seizures to help plan the best course of treatment. CT and MRI scans were also done.

“They decided to do surgery,” Kathy said.

For the surgery, Medical College of Wisconsin neurosurgeon Wade Mueller, MD, placed electrodes over the surface of Amanda’s brain for an intracranial EEG study. The electrodes, which are used to record brain electrical activity associated with seizures, provide a detailed “map” of the seizure-producing areas and can also provide an electrical “map” of important brain functions such as movement, vision or language.

The intracranial EEG study showed that her seizures originated from an area overlapping with areas that control movements of the left side. Dr. Mueller removed tissue in this area, but only a part of the abnormal tissue could be removed without risking paralysis on one side.

Amanda did not have any complications from the surgery but, unfortunately, her seizures continued, despite advancing her seizure medications.

First MEG Patient

During this time, a new technology — magnetoencephalography or MEG — was being tested at Froedtert & the Medical College. MEG is a non-invasive diagnostic tool that records magnetic fields in the brain. MEG can help neurologists and neurosurgeons evaluate and map brain activity to plan surgery, offering a significant advance in the care of patients with severe epilepsy or a brain tumor. Froedtert & the Medical College were the first in Wisconsin to offer MEG in a clinical (patient care) setting.

Due to continued seizures, Medical College of Wisconsin neurologist Manoj Raghavan, MD, PhD, suggested using MEG in an attempt to locate the seizure-producing regions in Amanda’s brain. Dr. Raghavan, director of the Comprehensive Epilepsy Program, was Amanda’s neurologist.

Two weeks after her surgery, Amanda was the first patient to have a clinical MEG scan at the hospital. MEG recordings are done in a special shielded room that blocks magnetic fields in the environment. This ensures that only the magnetic fields generated by the brain are detected by the MEG sensors. For the scan, Amanda sat in a comfortable armchair, and a special helmet containing the MEG sensors was placed around her head. She was asked not to move during the test, which lasted about one hour.

“Dr. Ragavan and Dr. Baillet analyzed the MEG recordings, which suggested that deeper tissue in the right side of the brain, close to motor areas, might be causing Amanda’s seizures,” Kathy said. Sylvain Baillet, PhD, was the scientific director of the MEG Program at Froedtert & the Medical College of Wisconsin. The epilepsy team reviewed Amanda’s brain imaging studies and prior intracranial EEG study in light of the MEG findings with Scott Rand, MD, PhD, a neuroradiology specialist, and confirmed the presence of a subtle structural anomaly that coincided with the region suspected to be causing her seizures. The anomaly had features called cortical dysplasia — an area of the brain surface with an abnormal organization of brain cells.

With this new information, a second surgery was planned. Linda Allen, RN, BSN, Program Coordinator, met with Amanda and Kathy to inform them about a procedure called “awake” surgery.

This specialized surgery allows the neurosurgeon to more precisely determine which brain tissue to remove. Patients receive local anesthesia but are awake and alert during surgery. The surgeon opens the skull to expose the part of the brain that is responsible for seizures and places electrodes on the brain to record brain activity. He then stimulates the brain to identify areas that govern functions such as speech and movement, so that these areas can be left untouched while areas causing seizures are removed.

On March 2, 2009, Dr. Mueller performed the “awake” surgery to remove the deeper tissue in Amanda’s brain. Drs. Rand and Raghavan assisted with image guidance to ensure all the abnormal tissue was removed.

“While Amanda was scared, Linda was with her during the four-hour surgery, holding her hand,” Kathy said. “She handled it very well.”

Planning a Future

Ten years after having her first seizure, Amanda greeted her 18th birthday in April 2009 seizure free. As of mid-October 2009, she has not had a single seizure.

“It was all worth it!” she said.

With the help of a tutor, Amanda was able to catch up on her studies, and graduate with her class at Cedarburg High School. Today, she is attending child development classes at MATC and hopes to pursue a career as a preschool teacher.

Amanda is slowly being weaned from some of her epilepsy medications and continues to see Medical College of Wisconsin neurologist Conrad Nievera Jr., MD, for follow-up visits.

“Amanda made some lifelong friends among the staff at Froedtert,” Kathy said.

“It was wonderful at Froedtert — the staff was great,” Amanda said. “I had a big pillow and all of my nurses signed it.”

For more information about the Comprehensive Epilepsy Program, call 414-805-3666 or 800-272-3666.

Note: Dr. Conrad Nievera Jr. and Dr. Sylvain Baillet are no longer with Froedtert & the Medical College of Wisconsin.

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