Putting the pieces together
Epilepsy diagnosis answers past questions, reveals current blessings
It was the day after Thanksgiving, 2006, when Becky Blair's life journey changed. She had spent the day helping her daughter move. She visited her father-in-law in Rose Hill with her husband, Jerry, and they were headed back to their rural Augusta home.
"She couldn't remember what she had done that day," Jerry recalls. "We were returning from my dad's house and she kept asking me if we had been there. She was disoriented and kept asking the same questions over and over. It was like her memory was just gone. I got really scared."
Over time, the 63-year-old says she learned that episodes dismissed since childhood as anxiety and panic attack — then later as menopausal hot flashes — were, in fact, epileptic seizures. Epilepsy is a neurological disorder characterized by repeated seizures, a result of abnormal electrical activity in the brain.
"My whole life went crashing into a wall," says the retired insurance underwriter. "I went from a normal lifestyle to everything changing in one fell swoop."
She categorizes her seizures into three levels of intensity, from small to large. She was having four to five small and medium seizures a week, and a more complex seizure about once each week. "The large ones literally blindside me," she says.
During this type of seizure, Becky remains conscious, but loses all awareness. She becomes vocal, often as if she's in conversation with a good friend. She repeatedly rubs her fingers together and smacks her lips. Sometimes she cries. When the seizure and her confusion subside, she's exhausted and needs to rest.
For safety reasons, she gave up everyday privileges such as one-on-one visits with grandbabies, solo swims in her above-ground pool and driving. "Before, if I needed to get some eggs, I just went to the store and got them. Now, I wait for Jerry to drive me, or I find someone else and get a ride."
Evaluation and treatment
In spring 2008, Via Christi Clinic neurologist Janice Mullinix, MD — now retired — referred Becky to Via Christi Epilepsy Center in Wichita for surgical evaluation for her difficult-to-treat seizures. In the safe and comfortable environment of the Epilepsy Monitoring Unit (EMU) at Via Christi Hospital St. Francis, she underwent continuous observation for five days in a private room. The EMU team used electroencephalogram (EEG) equipment to analyze her brain activity and a high-precision video camera to document her body movement during seizures.
Results of the video EEG and a brain MRI yielded varied treatment options, including an opportunity to participate in a national investigative device study available through Via Christi Research.
Of her decision to participate in the clinical trial, she says: "I was in my late 50s when I was told I couldn't drive. If this little device could give just one young person with epilepsy the chance to drive, then why not do it?"
In February 2009, Becky was implanted with the NeuroPace® RNS® System. A depth electrode was placed at the location of seizure focus in each temporal lobe. A responsive neurostimulator connected to the electrodes was placed underneath her scalp. It detects abnormal electrical activity and delivers small bursts of electrical stimulation to suppress her seizures.
In November 2013, the U.S. Food and Drug Administration granted premarket approval for the RNS System.
Today, her large seizures have decreased to about one a month. Because of information gained from her participation in the research trial, she is being evaluated for surgery in hopes of becoming seizure free.
Of her evolving journey and of the tears and frustration over losing her independence, Becky says: "I would do it all over again. The blessings have been in knowing I'm not in this alone. It starts with a loving husband and family."
|Speak to your primary care physician or neurologist about being evaluated at Via Christi Epilepsy Center. To learn more, and to watch a video on what to expect in the Epilepsy Monitoring Unit, visit viachristi.org/epilepsy or call 316-268-8500.
Did you know?
Epilepsy is a neurological disorder — not a disease — characterized by repeated seizures.
Epilepsy affects 65 million people of all ages, races and ethnicities worldwide, and is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer's disease.
One in 10 adults will have a seizure sometime during their life.
~The Epilepsy Foundation of America