From misdiagnosis to miracles

In every way, Taylor Hyma, 18, was a “normal teen.” She went to school, worked, hung out with friends, and took care of herself. Then suddenly, her life began to change. 

Initial symptoms and misdiagnosis

The first clue that something was wrong came unexpectedly on Thanksgiving Day 2022. 

“I was sitting on the couch, and the next thing I knew I was in the hospital,” Taylor said. 

She was experiencing seizures and was unresponsive.

Panicked, her family rushed her to an emergency department at a different health system. The medical staff described her condition as “something that would be fine — it would clear up in a year or two. Through an MRI, we found a spot on her brain from hitting her head.” 

Despite the MRI findings, Taylor had not experienced any head trauma. The family felt their concerns were totally dismissed.

Frustrated, Taylor’s parents advocated for their daughter by calling for an appointment with a neurologist at Trinity Health Hauenstein Neurosciences – Grand Rapids Campus. 

First contact with Trinity Health

On Christmas week 2022, Taylor was vomiting and unresponsive again, so Mr. and Mrs. Hyma took her to the Trinity Health Emergency department. Taylor was discharged with three anti-seizure medications.

The Hymas wanted to consult Hussam Shaker, MD, a board-certified neurologist and fellowship-trained epileptologist with Trinity Health Medical Group in Grand Rapids. Dr. Shaker was booked through January, but after hearing about Taylor’s situation, he made time to see her virtually. That was on Jan. 9, 2023.

Trinity Health Grand Rapids Epilepsy Center is a designated Level 4 epilepsy center — the highest awarded by the National Association of Epilepsy Centers. These centers provide the most comprehensive care available for people with epilepsy, especially those with complex or drug-resistant epilepsy, meaning the medications do not allow patients to be seizure free.

Taylor’s uncommon symptoms were getting worse: heart racing; vomiting; memory issues; mood changes; feeling hot; and back-to-back, breakthrough seizures — seizures without returning to normal. 

Micki Hyma, Taylor’s mom, recalls the first in-person meeting with Dr. Shaker in April 2023:              

“One of the things that made my husband and me trust Dr. Shaker was that he was optimistic that he could help Taylor. But what clinched it was when he said, ‘If she were my daughter ….’ We felt like he cared and that she was his priority. We deeply appreciate him. We never felt dismissed at Trinity Health. Not one time.”

That first in-person meeting was a lot for Taylor to take in. 

“I was nervous. Meeting a doctor for my brain was weird, but Dr. Shaker was truly kind.” 

In June 2023, Dr. Shaker admitted Taylor to the hospital’s Epilepsy Monitoring Unit to study her epilepsy and identify the network of her seizures.

Taylor’s disease progression

Taylor’s journey with epilepsy was just getting started. Over time, Dr. Shaker replaced some of Taylor’s anti-seizure medications and tried others, seven anti-seizure medications, in fact. Despite these efforts, Taylor’s breakthrough seizures got progressively worse. Taylor was suffering. 

“I couldn’t stand for any length of time. I was sleeping on the couch pretty much 24/7. I got headaches, hot flashes and threw up. And I was light sensitive. I had to live in the dark,” she said.

One side effect of Taylor’s medications was weight gain. Having to lie on the couch didn’t help either. A petite young woman, at her heaviest, Taylor’s weight surged from 114 to 189 pounds.

After a couple of years of treatment, Taylor was considered drug resistant. She wanted surgical treatment. To prepare for brain surgery, Taylor would need to undergo (1) preliminary tests, then (2) the SEEG procedure, and finally (3) brain surgery.

Preliminary tests involved measuring Taylor’s memory and language and mapping her neuroactivity. 

“The seizures were affecting her mood, language and memory,” said Dr. Shaker. “She did not have a decent quality of life. If we continued medications only, the chance of her being seizure-free was four to eight percent. Taylor was resistant to medications. We had to do something.”

SEEG procedure and diagnosis 

SEEG stands for stereo-electroencephalography. It is a minimally invasive diagnostic surgical procedure where electrodes are placed into the brain at specific locations that have been identified in other testing as sites where a patient’s seizures may originate from. 

The SEEG procedure uses the ROSA surgical robot, which lines up the brain with the images taken earlier to guide the neurosurgeon’s placement of the electrodes. Dr. Shaker and Trinity Health Medical Group neurosurgeon Jurgen Luders, MD, collaborated on Taylor’s SEEG procedure.

“These electrodes pick up signals from deep brain tissue that we would not be able to get with a regular scalp electroencephalography (EEG). The information gathered from SEEG allows the team to pinpoint an exact location where seizures start,” said Dr. Shaker.

Once the locations of the seizures are discovered, a second surgical procedure can be performed to remove that portion of the brain. The goal of the second surgery is to make a patient seizure free.

In March 2024, fifteen electrodes were placed into Taylor’s brain on the left side. Patients stayed in the hospital while an epileptologist and EEG technician performed functional mapping of each region of her brain. 

After the SEEG procedure, Dr. Shaker asked Taylor’s parents more questions about her childhood. Taylor had struggled with reading and had headaches since early childhood. Dr. Shaker concluded that Taylor had been having seizures her whole life, but they did not present as seizures. 

Surgical decision and outcome 

During the SEEG procedure, three sections in Taylor’s brain were identified as the source of her seizures. Taylor’s official diagnosis was location-related focal epilepsy with complex partial seizures, whose symptoms can lead to motor, sensory, autonomic, and cognitive disturbances.

Taylor had the option to do laser ablation on the amygdala — a minimally invasive surgical procedure that uses heat to destroy areas of abnormal cells, such as tumors or cells causing seizures. With that approach, the chances of her being seizure free would have been 30 to 50 percent.

A second option (RNS) for qualifying patients is to implant a stimulating device in the brain with wires that connect the device to electrodes placed in the brain where the seizures are coming from. The electrodes stimulate the brain to stop abnormal signals from causing seizures. The device also monitors seizures. This surgical option is reserved for patients who cannot have parts of their brain removed (resection) because they are particularly important, such as short-term memory or mobility.

The third option was brain surgery. Dr. Luders explained to Taylor that he could remove one, two or three sections of her brain. However, the more sections removed, the riskier the surgery. Taylor chose to remove all three sections because the chances of her becoming seizure free were approximately 60 to 70 percent, based on available research data.

Micki recalls meeting Dr. Luders. 

“When offering the surgical options, Dr. Luders told us that Taylor might wake up and not be able to speak a word. It was terrifying. But we have faith and believe in the power of prayer. After getting to know Dr. Luders, we fell in love with him.”

“Taylor was very brave,” said Dr. Luders. She took the lead on her own. She really pushed for the more aggressive surgery. If you can make the patient seizure free when the patient is young like Taylor, the better long-term outcome for the patient.” 

Dr. Luders performed Taylor’s brain surgery on July 22, 2024 — a left resection of the amygdala, hippocampus, and basal temporal and temporal pole — a surgery to treat drug-resistant epilepsy. For this surgery, he used a stealth navigation system, which integrates technologies such as CT, MRI, and ultrasound, to map the patient’s brain for extreme precision and increased safety during surgery. It is like a GPS for the brain.

After one night, Taylor was discharged from the hospital. She is thankful for the results of her decision. 

“I was so blessed. My team were the nicest people ever. I loved the care I received in the hospital. I woke up and felt amazing. Dr. Luders was so sweet.”

Life after surgery

Taylor’s life has noticeably improved since her surgery.

“I am blessed and very happy. I couldn’t have asked for anything more,” she said. “There are so many people with seizures who would love to be living like this.”

Micki agrees. “Now Taylor can drive and go to the store. She has her life back.” 

Dr. Shaker saw the change in Taylor immediately.

“The first time Taylor came to my office after surgery, I did not recognize her. She was a completely different person! I was incredibly happy when I saw her doing well. Taylor has been seizure free for nearly a year and a half. She has begun a new chapter in her life.”

Taylor is still on antiseizure medication because Dr. Shaker wants to prevent the epilepsy from finding a new path in her brain. He has begun to reduce Taylor’s antiseizure medications with the goal of keeping her on only one, due to her complex history.

Although the change to Taylor’s day-to-day life has been significant, there have been side effects. Following surgery, she experienced three months of severe headaches, which improved over time. 

Removal of tissue during surgery has also affected her speech, language, and memory. Even now, Taylor continues to receive help with language and memory at Mary Free Bed.

But Dr. Shaker is hopeful: “Taylor is still young. Her brain has neuroplasticity (a way to reorganize its neural pathways) which will help with her language and memory.” 

Advice and reflections

While her life is not perfect, Taylor focuses on all the things she can do, not what she cannot do.

When it comes to her future, she is considering a job working in a hospital because of the care she received at Trinity Health. 

“I was thinking about starting as a phlebotomist, but I might also start a side business by grooming dogs,” she said.

Here is what Taylor wants other people living with epilepsy to know: 

• Go to Dr. Shaker.
• Right now, you need to accept that you cannot do fun things with others like you used to.
• You need to recognize who will be there for you. Friendships can change when you are diagnosed with epilepsy.
• Take time for yourself.
• There is hope. Be patient, and your life could get better. 

If you or someone you love is struggling with seizures or drug-resistant epilepsy, you don’t have to face it alone. Visit TrinityHealthMichigan.org/Epilepsy to learn more and take the next step.