Doctors said she might never speak again. She might have a stroke or die during the operation.
But when Deborah Glass, 59, of Warsaw decided to have a 1-inch section of her brain removed in an effort to control her epilepsy, she was sure of herself.
“I knew it needed to happen because I felt that God wanted me to be there,” Glass said.
After 14 years of seizures and six months of recovery, Glass is seizure-free. In February, her high-risk surgery was completed in half of the expected time at the Cleveland Clinic Epilepsy Center — one of many reasons her neurologist, Dr. Imad Najm, of Cleveland Clinic calls her “the miracle patient.”
The first seizure
It happened for the first time on her 25th wedding anniversary.
Her husband Rick, 62, had stopped at a Richmond Heights, Ohio, gas station when Deborah became incoherent and unable to speak.
Rick rushed her to a small hospital three blocks away, and minutes after they arrived, Deborah had a grand mal seizure, which induces unconsciousness and violent muscle contractions, according to www.MayoClinic.com.
“She had never had one before,” Rick said, pausing and beginning to cry. He was holding her in his arms when she had the seizure.
“I spent most of the next hour having a brutally honest conversation with God in which I think I did all the talking and very little listening,” Rick said.
Although he didn't realize it at the time, Rick says there were small signs of Deborah's declining condition before her first seizure.
When they left for on their anniversary trip to visit Deborah's parents, she was two classes away from earning her Registered Nurse (RN) degree through IPFW at Parkview Hospital. But Deborah's grades were slipping because she was having trouble remembering information for tests, Rick says.
The doctors thought Deborah had a stroke, but after several tests, they determined she had an arteriovenous malformation, meaning blood vessels deep in her brain were abnormally connected and putting pressure on each other as they pumped blood, Rick said.
Deborah began seeking treatment with Dr. Gene Barnett, who created the Center for Computer-Assisted Neurosurgery at Cleveland Clinic in the late 1980s.
At the time, Rick says the best option to treat Deborah's condition was with Gamma Knife radiosurgery, in which doctors sent beams of radiation at her arteriovenous malformation to shut down the blood flow to those veins and reduce pressure.
Deborah received more than a dozen sessions of treatment over the next three months while living with her parents in Richmond Heights, and Rick drove to Cleveland twice a week to visit her while working full time at National Automotive Parts Association in Warsaw.
Eventually an angiogram showed the blood flow had stopped.
But even after radiosurgery, there was scar tissue deep in Deborah's brain, which still left her with epilepsy.
A second try
In the years after radiosurgery, Deborah's seizures fluctuated in severity and frequency, and she wasn't responding to medications.
Najm, of Cleveland Clinic Epilepsy Center, says 30 percent of patients with epilepsy are resistant to medication, like Deborah.
When epilepsy patients do not respond to at least two medications, they become candidates for a presurgical evaluation designed to locate where in the brain their seizures may be coming from, Najm says. This helps doctors understand the function of the brain in and around that epileptic area.
If the initial evaluation fails to reveal the cause and extent of epilepsy, there is a need for what is called “invasive evaluation,” according to Najm.
This evaluation uses subdural grids, meaning electrodes are placed directly in the surface of the brain to map seizures as they happen.
In 2005, Deborah had surgery to place electrode grids above and below her brain. Then she was moved to an epilepsy monitoring unit where doctors induced her seizures to map where they were coming from and determine which part of her brain to remove.
Rick says one of Deborah's seizures gave the doctors good data, but left her nearly comatose.
Deborah recovered, but doctors were unable to perform surgery because they did not get enough information about where her seizures were coming from.
“All we could do was go back every six months to get tests, adjust medications and hope one day the technology would be there to help her,” Rick said.
A new procedure
When Rick and Deborah visited Cleveland Clinic in fall 2011, doctors told them about an epilepsy mapping method the Cleveland Clinic team began using in March 2009 called Stereoelectroencephalography (SEEG).
According to Najm, the SEEG method allows doctors to achieve greater accuracy in determining where seizures originate by drilling small holes in the patient's skull to insert electrodes deep within the part of the brain where they believe seizures are coming from. A robot with 1 millimeter accuracy is pre-programmed to insert the electrodes through the skull at various angles and areas, Najm said.
Once the electrodes are inserted, patients are taken to the epilepsy unit for their seizures to be monitored.
The only reported place in Indiana to offer SEEG treatment is at the Indiana University Health Neuroscience Center in Indianapolis, according to John Perlich of Parkview Hospital.
When the Cleveland doctors performed a SEEG on Deborah in fall 2011, they were able to pinpoint her seizures' location in the left side of her brain in an area called the insula, Najm said.
“This area is basically near the front part of the left ear lobe,” Najm said.
Because the left side of the brain controls speech and reading comprehension, surgery in that area risked Deborah's ability to understand speech and writing.
“She also may have been at a very high (20-30 percent) risk of developing a stroke during surgery because that area in the insula is surrounded by so many arteries,” Najm said.
According to Najm, the surgeon, Dr. Jorge Gonzalez-Martinez, would have to carefully navigate his way around Deborah's arteries because any small mistake could result in a big stroke, potentially disabling the right side of her body.
“That's why her surgery was one of the toughest surgeries we've done at Cleveland Clinic,” Najm said.
Deborah's surgery with Gonzalez was scheduled to last five hours.
Rick waited in the P Building at Cleveland Clinic, checking Deborah's progress on a monitor in the lobby and watching his pager. When it buzzed two-and-a-half hours into Deborah's surgery, he feared the worst.
Then he saw Gonzalez smiling.
Surgery was over, and everything went better than expected in half the time, Rick said.
The same day, Deborah was able to talk, and the next morning she started speech therapy.
“We both know there was a higher power involved in all of this,” Rick said. “We feel divinely blessed.”
Three weeks ago, Rick had a total ankle replacement. Since then, he's been getting around on a scooter, and Deborah has been taking care of him.
“I figure it's my turn now,” Rick says, laughing.
He hands the phone back to Deborah.
There's a long pause. Then she recites Jeremiah 29:11: “'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'”
“I've had that verse with me forever,” Deborah says.