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Getting Back in the Driver's Seat

Jenn Tomlinson regains control of her life with epilepsy specialist's help

Jenn TomlinsonIn her early 20s, Jenn Tomlinson 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 said. "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 said.

She would return home with no explanation and no validations. 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 two 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 at Centerpoint Medical Center 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, called 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."

Life after epilepsy

Jenn Tomlinson has her freedom again
After neurosurgery resolved years of uncontrolled epilepsy, Jenn Tomlinson regained her driver's license and her freedom.

After surgery, Jenn spent 2 days in the hospital. A week later, she was at her daughter's softball game.

"You're mentally and physically exhausted, but you can still do stuff," she says. "I thought after surgery I would be in so much pain, but it wasn't a level I couldn't deal with. I could still be a parent."

By her eighth week after surgery, Jenn's energy returned. Today, her prognosis is excellent and she has had no seizures.

How does she plan to celebrate? Simple. Jenn wants to drive. Her six-month seizure-free anniversary is appropriately Thanksgiving Day 2017.

"I have a lot to be thankful for this year!" she says.

Jenn is also looking forward to wake-boarding and resuming her photography hobby, with her children being her favorite subjects.

Related link: Follow along with Jenn's journey.