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- Getting Back in the Drivers Seat Jenn Krause Epilepsy Story
October 31, 2018
Jennifer Krause: It's amazing to be able to just get up, take a car key, go out, and go, "I'm going to go get a Dr Pepper today."
Narrator: For many years, 39-year-old Jennifer Krause was unable to drive. She suffered from what she described as mild episodes as a teen and into her 20s.
Jennifer Krause: You just kind of go dizzy, and then I would get this warm sensation over the whole left side of my body.
Narrator: Countless doctors didn't have a diagnosis. Jennifer just lived dizzy, exhausted, and looking for answers until one day, back in 2009.
Jennifer Krause: I was walking into a local store, walked in, fell face first on the concrete, and went into my first grand mal seizure.
Narrator: But it happened again in 2012.
Jennifer Krause: I was driving to the lake and went into a grand mal seizure while driving. My son, being the hero that he is, reached over, turned the car off, and pulled us into a ditch.
Narrator: Dozens of MRIs over the years revealed nothing until finally a doctor found a lesion on her brain and sent her to the University of Kansas health system where she met with Dr. Carol Ulloa.
Dr. Carol Ulloa: When we get our hands on the MRI that was done elsewhere, we can see the abnormality. It's just it was never picked up. It was really quite a shame because she'd been having seizures for over two decades. Just from her telling me what she felt during her seizures and knowing what those were like, really, by the end of the visit, I could tell her, you have right temporal lobe epilepsy.
Jennifer Krause: Absolutely transformation from all of the other doctors that I had seen. It wasn't the, "There's nothing wrong with you." It was, "There's something. We're going to find it."
Narrator: Jennifer's epilepsy had taken a toll on her entire life. Jennifer Krause: Cut food, a knife, that's scary if you have a seizure with a knife. You can't walk downstairs. Narrator: And, eventually, her marriage.
Jennifer Krause: Can't swim at the lake because, what happens if you have a seizure? Can't bathe. There's just so many can't, you can't, you can't.
Narrator: But surgery to remove that part of the brain changed that. Carol Ulloa: I knew she was a good candidate. I told her, with the surgery, she'd have about a 75% chance of not ever having a seizure again.
Narrator: Jennifer is now back to life, driving, traveling, and single momming it, and she's immersed herself into the local epilepsy community, lending her story to help inspire others looking for their answers.
Jennifer Krause: The only message I would have to them is not to give up because, again, technology is changing daily. New treatments are coming out all the time. There's hope. I mean, I never thought in my wildest dreams I would be three years seizure-free.
Jenn Krause regains control of her life with epilepsy specialist's help
In her early 20s, Jenn Krause spent countless hours in emergency rooms eagerly seeking answers but leaving in despair. It took years to identify and solve a medical problem she had been living with for decades.
"I would experience this odd déjà vu feeling," she says. "It was followed by this feeling like warm water trickling over my head and down the left side of my body. I would get extremely dizzy and become overwhelmingly exhausted. I remember experiencing these episodes as early as age 10."
Over nearly 20 years, Jenn saw 8 neurologists and had 10 MRIs.
"Every doctor told me there was nothing wrong with me, that I was suffering from anxiety and depression," Jenn says.
She would return home with no explanation and no validation. Her family and friends began to question the authenticity of her symptoms.
"It was a disheartening time in my life," she recalls.
She continued to live with limitations as normally as she could. Eventually, in 2014, Jenn learned the strange feelings were partial or focal seizures. She was diagnosed with epilepsy and began exploring medication after medication in an ongoing but unsuccessful effort to control the seizures.
Challenges at work and home
Today, Jenn lives in Lee's Summit, Missouri, and has 2 teenaged children. Epilepsy affected her entire family through the years. Jenn didn't always have the energy and attentiveness to be the mother she wanted to be.
"I was always saying, 'I'm sorry, I don't feel well. I'm sorry, I can't do that,'"
Jenn says. Jenn's professional life was equally challenging. Her colleagues knew she had epilepsy, but it didn't ease her fears.
"In meetings, I would have a seizure and think, 'What if this progresses into a convulsion?' or 'What if they ask me a question, and I have no idea what they just said?'"
And there was another daily struggle. Due to seizures, Jenn could not safely drive.
"Not being able to drive is crippling," she says.
She attempted to access public transportation options, but the complexity of coordinating across state lines was unmanageable. She repeatedly asked family and friends for rides, which strained relationships.
Finally, a breakthrough
Jenn's subtle focal seizures – the odd feelings – had become routine, sometimes occurring as many as 25 times a day.
In 2016, on a friend's recommendation, Jenn went to see a doctor in Independence, Missouri. That doctor referred Jenn to the fellowship-trained epileptologists – neurologists who focus on epilepsy care only – at The University of Kansas Health System's Comprehensive Level 4 Epilepsy Center in Kansas City, the only program in Kansas to earn the highest standard for epilepsy care.
There, Jenn found epileptologist Carol Ulloa, MD, program director. Dr. Ulloa helped Jenn get the right diagnosis. She began by getting a thorough case history, initiating testing to determine the cause of the epilepsy, and assessing treatment options, including whether Jenn would be a suitable candidate for neurosurgery.
"Our high-resolution MRI with 3-tesla magnet and epilepsy protocol and our specialized neuroradiologist picked up a subtle abnormality in Jenn's right temporal lobe," says Dr. Ulloa. "Although it is helpful to identify a previously unknown lesion as the cause of epilepsy, it is not a necessity in moving forward with surgery. Additional testing, such as EEG monitoring, can help pinpoint where in the brain seizures originate."
Having lived with uncertainties for so long, Jenn decided to move forward with surgery she hoped would provide permanent resolution.
Surgery's a slam dunk
Neurosurgeon Paul Camarata, MD, calls Jenn's operation a "slam dunk."
Advanced imaging, also a key differentiator of a Level 4 Epilepsy Center, determined the procedure would not affect any brain function.
"For Jenn, everything lined up very nicely," Dr. Ulloa says.
"They were right," Jenn says. "It was a slam dunk. It has been an amazing experience. Dr. Camarata and Dr. Ulloa were amazing. I could not have asked for a better outcome."
