Former Sufferer of Rare Disease Called Musicogenic Epilepsy Thanks LIJ Medical Team That Ended Her Seizures and Gave Her Back the Gift of Music
Thanks to innovative medical and surgical techniques of physicians at LIJ Medical Center, 25-year-old Stacey Gayle can now look forward to singing in her church choir and listening to the radio. At a news conference today, Ms. Gayle and her doctors discussed a rare condition known as musicogenic epilepsy that not only robbed her of her health, but of the very important gift of music.
Four years ago at the age of 21, Ms. Gayle awoke one morning in a hospital, unable to remember how she got there. Her mother had called an ambulance when her daughter had two grand mal seizures in her sleep. Doctors told her that she had epilepsy, and started her on a regimen of medications to help prevent seizures.
At first, the drugs controlled her seizures, but eventually they produced very uncomfortable side effects. Her seizures starting coming more often and were very unpredictable. She would sometimes have as many as 10 seizures a day, and sometimes two months would go by with no activity at all. This unpredictability caused her a great deal of anxiety and made it impossible for her to continue working at a financial services company. She was afraid she would start seizing in the subway or while walking down stairs. Eventually, she had to take a leave of absence from work because of these unpredictable and severe seizures. Ms. Gayle sought help at LIJ’s Comprehensive Epilepsy Center, part of the Harvey Cushing Institutes of Neuroscience. There, under the care of Alan Ettinger, MD, the hospital’s chief of epilepsy, it was discovered that she was suffering from a type of epilepsy that began in one abnormal area of the brain and spread to normal parts of the brain. Doctors were hopeful that if they could pinpoint the diseased area of the brain where the seizures originated and safely remove it, they could stop the seizures. By performing an electroencephalography test or EEG (the measurement of electrical activity produced by the brain recorded from electrodes placed on the scalp), doctors were able to determine that the abnormal area was on the right side of her brain, but the exact location was not clear. By 2006, Ms. Gayle’s seizures began to get worse; she sometimes suffered the attacks while riding the bus and attending parties. The one positive development was that she began to know when she was about to have a seizure, because she developed “auras,” or unusual feelings or sensations, just prior to a seizure. One Sunday afternoon at a barbecue, Ms. Gayle was hit with the same sensation as she was listening to the hit song “Temperature” by the Jamaican reggae and rap artist Sean Paul. She immediately suffered a seizure, but after waking up, she remembered that the same song was playing on the radio prior to an earlier seizure she had. She wondered, could that song have triggered her seizures? In February 2007, Ms. Gayle was admitted to LIJ for a video EEG, which monitors brain waves as the patient is being videotaped, helping doctors determine the type of seizures the patient may be having. In Ms. Gayle’s case, however, the test would only be effective if she sustained a seizure during the EEG. After spending three days in the video monitoring unit with no seizures, Ms. Gayle revealed to doctors that she might be able to help induce one. On the fourth day, she asked her mother to bring in her iPod and programmed it to repeat Sean Paul’s “Temperature.” That night, she suffered three seizures and was discharged. The next part of Ms. Gayle journey led her to Ashesh Mehta, MD, LIJ’s director of epilepsy surgery, who told her that her disease could be treated by surgery. The video EEG confirmed that the seizures were originating from the right side of the brain. To determine the exact location, Dr. Mehta surgically implanted electrodes into different areas of the brain. Usually, electrodes are targeted to areas of abnormality on brain imaging, but magnetic resonance imaging (MRI) and positron emission tomography (PET) scans failed to reveal any abnormalities -- PET scans provide a three-dimensional image or map of functional processes of the body. “Being that the seizures could be triggered by the music, this was a very interesting opportunity to study Stacey’s brain,” said Dr. Mehta. “We decided to obtain an image of brain activity prior to a seizure, then trigger the seizure and obtain another study right after the seizure.” Prior to the surgery for implanting electrodes into Ms. Gayle’s brain, she went to The Feinstein Institute for Medical Research in Manhasset, NY, where researchers performed a PET scan for baseline purposes. Ms. Gayle started listening to “Temperature” on her iPod while an EEG was recorded; two minutes into the song, the EEG showed that she was having another seizure. Doctors quickly injected a radioactive tracer into Ms. Gayle that flowed to the abnormal area of the brain and then another PET scan was performed. This second PET scan revealed a small part of the brain, called the mesial temporal lobe, where the seizure originated. With this information, Dr. Mehta registered all of this information together using a GPS-like system in the operating room called “frameless sterotaxy,” which helps guide the surgeon during the procedure. Assisted by Steven Schneider, MD, Dr. Mehta implanted more than 100 electrodes into the right side of Ms. Gayle’s brain, making sure to target the abnormal area of the brain defined by the PET scan. With all of the electrodes in the brain, she was brought to a special hospital room at LIJ to record brain waves and define where the seizures were beginning. Four days went by and she had no seizures. Again, Sean Paul came to the rescue. Ms. Gayle started listening to “Temperature” on the “repeat” mode and had three seizures, all of which came from the area defined by the PET scan and another area called the hippocampus. Prior to the surgery, neuropsychologist Kenneth Perrine, PhD, studied her brain and determined what areas could be safely removed without causing any neurological deficits. On October 3, 2007, Dr. Mehta’s team performed a second surgery where the electrodes were removed together with the areas of the brain where her seizures were originating. “We used the latest techniques, including image guidance, to pinpoint the areas of abnormality and the operating microscope to perform the procedure during a four-hour operation,” he said. “Stacey did well after the surgery, and went home three days later in stable condition.” Over the past 3 ½ months since her last surgery, Ms. Gayle has had no seizures. She now is guided by a new philosophy of life: “I always live each day like it’s my last,” she said. “I am the master of my own destiny, and in that respect, I possess no disabilities. I want to show others that life does not end at epilepsy. I know I have what it takes to succeed.” Media Contact: Michelle Pinto 516-465-2649/2600 About the Harvey Cushing Institutes of Neuroscience |