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Patient Stories

At the DMC/WSU Comprehensive Epilepsy Program, we’ve helped thousands of patients achieve freedom from seizures with the fewest possible side effects. Learn about our program through the eyes of our patients.

Alysse M.

Alysse wasn't born with epilepsy. A former television reporter, she was working in public relations for a major auto supplier and planning her wedding when she had her first seizure in 2003.

"I remember I was really busy with work and planning this big wedding and I started to feel just awful, like I had the flu," she said.

Alysse didn't know it, but she actually had meningitis and encephalitis, which can cause brain damage and sometimes death. Her fiancé, Andrew, knew something was seriously wrong before she did.

"We were at home together after a busy day and I had four grand mal seizures in a row and then slipped into a coma," she said.

When she awoke in the hospital a few weeks later, her mother and brother sat at her bedside — along with a man she didn't recognize. It was Andrew.

"We later figured out that I'd lost about three years of short term memory," she said. "I didn't know who my fiancé was. I didn't know we were planning this big wedding. I didn't know why I was no longer working in television."

Brain damage caused by the illness also left Alysse with frequent seizures — everything from petit mal (absence) seizures and complex partial seizures to grand mal (generalized tonic-clonic) seizures. She not only had to rebuild her life without any recollection of the last three years, she had to learn to live with epilepsy.

At the time, Alysse and Andrew were living in Maryland, so they began seeing epilepsy specialists at the Johns Hopkins University Hospital in Baltimore. They were thrilled with the quality of care she received there — and how the epilepsy team helped her understand her condition — but nothing helped control the seizures.

"We tried several different antiepileptic drugs, but I was allergic to most of them," she said. “And I was committed to mono-therapy. I didn’t want to take several different drugs at the same time because the side effects can be so brutal.”

Instead of trying to eliminate the seizures, she learned to live with them. She gave up driving, but continued to work. She and Andrew cancelled the big wedding and were married in a small ceremony surrounded by family and close friends.

A few years later, after discussing the risks with her epileptologists and working with a high-risk obstetrics team, Alysse and Andrew had a healthy baby girl. Soon after, Alysse started researching surgical options for treating her epilepsy.

In 2006, about a year after the birth of her daughter, Alysse took the first step toward surgical treatment of her epilepsy. She had a surgical procedure to implant electroencephalograph (EEG) electrodes on the surface of her brain and spent the next 14 days in the epilepsy monitoring unit (EMU) at Johns Hopkins Hospital.

An EMU is a specially designed inpatient unit staffed by registered EEG technologists, specially trained nurses, neurology residents, clinical neurophysiology fellows and neurologists with advanced training in the field of epilepsy. Patients in an EMU are monitored 24 hours a day with continuous video EEG technology. The goal of this evaluation is to catch a seizure on video and EEG at the same time. To do this, video and EEG images are reviewed side-by-side on a split screen to evaluate how the behavior during seizures is related to the brain’s electrical activity.

Unfortunately, based on the data gathered during Alysse's stay in the EMU at Johns Hopkins, she was not a good candidate for surgical treatment. "They felt surgical treatment would be too risky because I was considered high functioning,” she said. “I had a family and a career and a pretty full life, so they did not want to risk surgery.”

When the family relocated to Michigan, Alysse continued seeing her doctors in Baltimore until she met Aashit K. Shah, M.D., and Sandeep Mittal, M.D., F.R.C.S.C., at the DMC Comprehensive Epilepsy Program at DMC Harper University Hospital in Detroit.

"I was flying back and forth for medical appointments, which was pretty ridiculous when there are these great epileptologists and neurosurgeons right here locally," she said.

Dr. Shah reviewed her case and, while he had great respect for the opinions of her doctors in Baltimore, he felt surgical treatment might still be possible. Alysse was on board immediately, even though it meant another surgical procedure to implant EEG electrodes on the surface of her brain and two more weeks in the EMU at Harper University Hospital.

"I don't know how many people go through that twice, but I was highly motivated to get these seizures under control," she said.

Alysse's hopes were high, but the second long-term video EEG study confirmed the original results: Her seizures were coming from both temporal lobes, which meant surgical treatment was not an option.

"I was devastated," she said. "I'd really had my heart set on a surgical treatment."

But Drs. Shah and Mittal weren't out of treatment options yet. They brought her a box containing a vagal nerve stimulation (VNS) device and explained how the innovative therapy worked. If she was willing, they would implant the device in her chest wall just below her collar bone and run a wire up to the vagal nerve in her neck. The device would be programmed to send pulsed electrical signals to the nerve at regular intervals. While it’s rare for VNS therapy to eliminate seizures, it often decreases their frequency and minimizes their duration.

That was all Alysse needed to hear. Within days, Dr. Mittal implanted the VNS device in her chest wall and connected the wires to her vagal nerve.

"It took some getting used to, but it was a good move for me,” she said. “It hasn’t left me seizure free, but it has drastically reduced the severity of my seizures. And my bounce-back time is so much better now.”

That “bounce-back” time is important to Alysse since she leads an active life — balancing a career, family and volunteer work. “I always have to be on. I just don’t have time for down time,” she said. “When you have a bad seizure, it can put you out for a couple days. But this device really helps me bounce back in an hour or two.”

After receiving care at both Johns Hopkins Hospital and Harper University Hospital, Alysse said they are both fantastic institutions. “I was thrilled with the care I received in Baltimore and I’m equally thrilled with the care I receive at Harper University Hospital in Detroit. I think the world of Dr. Shah and his colleagues.”

Kurt W.

Kurt W. has faced more than his share of medical challenges, but the 49-year-old Livonia man maintains a positive attitude through it all.

Both Kurt and his older brother were diagnosed with Alport’s syndrome in their 20s. The inherited kidney disease often leads to kidney failure — as it did for Kurt when he was 27. He spent five years on dialysis before receiving a kidney transplant at Harper University Hospital in 1996.

“I wanted to get a kidney transplant because dialysis was challenging for me,” Kurt said. “I was young and active, so dialysis didn’t really fit into my life.”

More than 15 years later, Kurt is thriving with his transplanted kidney. He's healthy and active. He even competes in the U.S. Transplant Games. But that's not what makes Kurt's story truly remarkable.

In addition to being a transplant recipient, Kurt also has epilepsy. About seven years after his kidney transplant, he had a grand mal seizure. “That was very scary,” he said. “I don’t remember much about it — just waking up in my brother’s arms after it was over.”

Kurt returned to Harper University Hospital, this time to meet with experts at the DMC Comprehensive Epilepsy Program. Antiepileptic drugs helped control the seizures, but Kurt began having trouble with his short-term memory and language. After extensive monitoring and neuroimaging studies, Aashit K. Shah, M.D., identified the cause — a large tumor in Kurt’s left temporal lobe. Neurosurgical resection of the tumor would be needed to eliminate the seizures and prevent further problems.

“After having a transplant and being on dialysis for five years, I wasn’t worried about the surgery,” Kurt said. “I knew these doctors are great. I was like, ‘c’mon, guys. Let’s do this!’”

In preparation for the surgery, the Comprehensive Epilepsy team worked closely with the Transplant team at Harper University Hospital — adjusting Kurt’s medications for the best surgical results. In March 2007, Sandeep Mittal, M.D., F.R.C.S.C., removed the tumor during a lengthy procedure.

The seizures stopped immediately, but as expected, the tumor and surgery had affected Kurt’s language and short-term memory.

“When I woke up, I couldn’t remember my wife’s name,” he said. “I recognized her. I knew who she was. I just couldn’t remember her name. It was very strange.”

Over the next several years, Kurt learned to talk again. Through speech therapy and hard work, his language skills and short-term memory function improved dramatically. He says he still struggles to find the right words in certain situations, but it gets a little easier every day.

“I’m doing super,” he says. “It’s amazing how much better my memory and speech are now.”

While he still takes antiepileptic drugs, he’s been free of seizures since the surgery. He’s back working the same job he had before his surgery and continues to drive. He and his wife will travel to the U.S. Transplant Games again this year.

Kurt credits his doctors at Harper University Hospital — and his own positive attitude — with his remarkable recovery after both transplant surgery and brain surgery.

“Your attitude is so important in life, no matter what challenges you face,” he said. “It would have been really easy to just give up. I could have given up when I was on dialysis. I could have given up when I had to learn to talk again. But I always try to stay positive. That’s what made the biggest difference.”
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