Implanted device proves life-changing for Coralville woman
Meghan D’Souza-Ewinger, a library assistant at the Coralville Public Library, returns a book to the shelf last week. Five years ago, doctors implanted a device in D’Souza-Ewinger’s left shoulder area and neck to control her partial seizures. / Josh O’Leary / Iowa City Press-Citizen
Meghan D’Souza-Ewinger, a library assistant at the Coralville Public Library, checks out materials last week. Five years ago, doctors implanted a device in D’Souza-Ewinger’s left shoulder area and neck to control her partial seizures. / Josh O’Leary / Iowa City Press-Citizen
The sound of the rolling carts, the repetition of the passing food labels, the fluorescent lighting — it was all too much. She would flee the store for the calm of the car.
“I just felt very trapped and scared and hopeless,” said D’Souza-Ewinger of that period eight years ago when she was diagnosed with epilepsy while an undergraduate at the University of Iowa.
Today, remarkably, that feeling of despair is behind her. The 29-year-old Coralville woman has passed the five-year milestone since doctors implanted a device in her neck, often referred to as a pacemaker for the brain, that proved to be life changing.
“I was basically bedridden for a long time,” D’Souza-Ewinger said. “Now I have two jobs, I’m healthy, I like to do a lot of volunteer work and I’m really social. I kind of forget how it used to be, unless I’m forced to think about it.”
The spells first came on in force during her junior year at UI, where the Burlington native was studying communications. The Vertigo, nausea and a feeling of what she describes detachment from her own body — jamais vu — was debilitating. She moved home and began seeing doctors, at first suspecting an inner-ear problem because of the dizziness.
D’Souza-Ewinger was too sick to return to Iowa City the first semester of what was supposed to be her senior year. That fall, she passed out while talking with her mother in their home. Her ears rang, her vision faded, then she lost consciousness. When she awoke, her mother, a nurse, was calling for an ambulance.
Following the spell, and after nearly a half year of searching for answers, an EEG run by a neurologist revealed she had epilepsy and had suffered a complex partial seizure. Unlike the violent muscle contractions of a grand mal seizure, D’Souza-Ewinger had been experiencing complex and simple partial seizures, which can result in spontaneous sensory symptoms and altered consciousness.
In hindsight, there were other clues when she was younger, D’Souza-Ewinger said. The flashing lights at a school dance at age 11 triggered a spell that the family had thought was anxiety related. Another incident a few years later was chalked up to dehydration.
But now doctors had given a name to D’Souza-Ewinger’s condition, which had tied the self-described go-getter with big ambitions to her bed.
“I don’t really like to say I am an epileptic, because I feel that’s just one defining word,” she said. “But the scariest part was saying, ‘I have epilepsy and I always will.’”
Doctors would try a number of medications in the coming year, but side effects like stuttering and fogginess, as well as the overall ineffectiveness of the drugs, proved frustrating. Her first doctor built up hopes that a single medication would be all that was needed to kick the symptoms, she said, a second told her that she needed to accept her life as she now knew it.
“The four walls in my my bedroom were my life,” she said.
Even still, D’Souza-Ewinger managed to return to Iowa City in the spring, where she lived with her aunt and managed to finish her degree. When graduation day came in December 2004, she was too ill to attend.
Eventually, D’Souza-Ewinger and her mother’s persistence and determination to not give in brought them to a third doctor, Marc Hines, a neurologist who at the time was working out of Ottumwa. It was Hines who first brought up the idea of Vagus Nerve Stimulation, a technique that inhibits seizures by using an implant that pulses signals to the brain, which Hines said can often be overlooked by doctors as an option.
D’Souza-Ewinger underwent surgery in October 2006, just a few months after she married husband Kevin Ewinger. Doctors implanted the pacemaker-like device, which weighs less than an ounce and is about the size of a small pocket watch, near her left collarbone, then threaded a thin wire from the generator up the left side of her neck and coiled it around her left vagus nerve.
“The idea is that the stimulation goes retrograde, up to the brain,” said Hines, who now works at Covenant Medical Center in Waterloo. “The vagus nerve usually goes out to the body from the brain. It seems to enhance a network of inhibitory neurons, nerve cells, in the brain, that inhibit the seizures.”
D’Souza-Ewinger was allowed to heal from the surgery for a few weeks before Hines put the VNS device to work. Over the course of the next several months, the doctor incrementally ratcheted up the frequency and power of the pulse to find the most effective dosage. D’Souza-Ewinger felt better almost immediately, she said, and things only improved as the months passed.
More than 40,000 patients worldwide have been treated with VNS Therapy since it was introduced in the U.S. in 1997 as a means of reducing the frequency of seizures, according to Cyberonics, the Houston-based company that makes the devices. It has also been approved to treat depression.
“This is often very helpful, at the minimum, with reducing the medicines, and oftentimes with marked improvement in seizure control,” Hines said.
Last October, D’Souza-Ewinger went under the knife again, this time to change the battery in the device. Otherwise her trips to the doctor have been cut down to once every month or two.
“She’s a very unique person,” said her mother, Marlene Raid. “I don’t know that I could have gotten through this, but she did. So that strength inside of her is really powerful.”
D’Souza-Ewinger now has an active social life, and has a pair of jobs, including working as a library assistant at the Coralville Public Library. She devotes much of her free time to charity, with past projects including stitching dresses for underprivileged children and organizing small drives for the University of Iowa Children’s Hospital. She has made it a goal for 2012 to take part in at least one charitable event a month.
“For so many years I had felt trapped and closed in,” she said. “Now I feel so alive. I just want to do everything and really live. It’s incredible.”