Patient Stories

Triumph of Will and Expert Care in Brain Stem Stroke Recovery

Jan. 4, 2024

Follow Kevin's incredible journey of determination and resilience in the face of a rare and challenging brain stem stroke. His unwavering willpower, coupled with the unparalleled expertise of the UC Health team in Cincinnati, paints a vivid portrait of a journey through adversity, innovative treatment, and a steadfast belief in recovery against all odds.

On a chilly February morning in 2022, during a round of disc golf in Monroe, Ohio, life took an unexpected turn for Kevin Moss. Kevin, a then 46-year-old retired engineer, had just teed off with a group of friends when a subtle pain began at the back of his neck during the first drive, unknowingly a potential sign of a rare type of stroke.

Recognizing Stroke Symptoms: A Critical Moment 

Experiencing dizziness accompanied by the simple act of picking up a disc, Kevin dismissed it as the cold weather and pushed on.

“It was 10:30 or 11:00 a.m. On the very first drive, I felt this pain in the back of my neck but didn't think much of it. I did get a little bit dizzy picking up the first disc. A couple of holes later same thing. This went on for the next few holes. I started to feel a little bit nauseous and a few holes later, I almost passed out. Something wasn't right and it was obvious at this point.”

Emergency Response and Choosing the Right Stroke Treatment Center

Kevin’s friend tried giving him something to drink but he couldn’t swallow. Something definitely wasn’t right, so the group called 911. Given the choice by local EMS between UC Health’s West Chester Hospital and another hospital, Kevin chose UC Health.

Diagnosis: A Complex Case of Brainstem Stroke

Initial confusion surrounded his symptoms. The turning point came when Stacie Demel, DO, PhD, a member of the inpatient Neurology Team at West Chester Hospital, and UC Stroke Team for the Greater Cincinnati/Northern Kentucky Region connected the dots, identifying a stroke affecting the brainstem. This wasn't an ischemic stroke with typical symptoms of facial weakness, arm weakness and slurred speech—it was different and complex.

Understanding Brain Stem Strokes

This diagnosis marked a pivotal moment in Kevin's journey. Brainstem strokes are particularly complex due to their location. The brainstem is crucial for controlling basic functions like breathing, heart rate and blood pressure. Unlike other locations of strokes, brainstem strokes present unique symptoms, and thus diagnostic challenges. These can include difficulties with balance, eye movement, facial paralysis, and in Kevin's case, problems with swallowing and speech. Brainstem strokes can also involve both sides of the body, which is not typical for strokes in other brain locations. The brainstem's role in connecting the brain to the spinal cord means that even small strokes can have widespread effects on bodily functions. Recovery from a brainstem stroke involves a tailored approach, emphasizing both physical therapy and innovative treatments to address these complex symptoms.

For Kevin, the following days blurred into a challenging journey. Weakness engulfed Kevin’s left side, while the right lost all sensation, rendering him unable to walk, eat, or even swallow.

Hospitalized at West Chester Hospital for nearly four weeks, the focus shifted from preventing another stroke to preparing for a long rehabilitation path ahead, including daily physical and occupational therapy sessions essential for stroke recovery. Kevin, still unable to swallow, was placed on a feeding tube and ultimately a Percutaneous Endoscopic Gastrostomy (PEG) tube to allow him to receive nutrition through his stomach.

Remarkable Progress and New Hope

Kevin’s stroke recovery continued post-discharge. He underwent speech and swallowing therapy at an outside facility, disappointed and craving more partnership.

“This was my low point. It was terrible. I had therapy five days a week. Every stroke is different…but it was obvious that the approach wasn’t what I needed…There was no trying new and different things.”

Fortunately, with exceptional physical and occupational therapy that ultimately moved to in-home rehab, he became stronger, going from 100% wheelchair-bound to walking by June 2022, four months post-stroke.

However, still unable to swallow and speak at his pre-stroke level, Kevin was referred to Dr. Rebecca Howell, Director of the UC Health Swallowing Center, for answers. A week later he was sitting in front of Dr. Howell at West Chester Hospital.

“They did a lot of tests and Dr. Howell looked at me and said, ‘I’ll have you eating by Christmas.’ It had been 4 months. I had a lot of doubt, but I said, ‘When’s the surgery?’”

On July 20, 2022, Dr. Howell conducted an intricate 6-hour surgery to restore Kevin’s vocal cord function, pave the way for recovery, and regain his ability to eat and swallow once again. During his six-week recovery period, Kevin began seeing Brittany Krekeler, PhD, CCC-SLP, clinician-scientist in the Department of Otolaryngology-Head & Neck Surgery, or as he calls her, Dr. Brittany, to begin his weekly swallowing therapy, along with twice weekly visits with Angela Dionisio, MS, CCC-SLP, speech-language pathologist specializing in swallowing disorders.

“It had been basically seven months since I had anything. At the end of the very first session, after doing some water swallowing, Dr. Brittany brought out a fruit cup and had me try a couple of peaches. They went down, and let me tell you, it was the greatest thing ever. Best peaches ever.”

Milestones in Recovery: Celebrating Every Achievement

As the weeks progressed, Kevin slowly added new items, working his way from soft fruits to thicker foods.

“Now I had some homework, and it was the best homework ever,” Kevin remembers with a laugh.

By mid-October, he was eating 100% of his meals. And on the Friday before Thanksgiving 2022, his PEG tube was removed, marking a massive milestone many doubted he would ever see.

But not Dr. Howell and her team. She had fulfilled her Christmas promise. Through the dark moments, doubts, and struggles, Kevin’s relentless spirit, as a stroke survivor, emerged.

“If you don’t like the care you’re receiving, seek others…There were some dark times…but life is worth living, it’s short but it’s worth living…I would always try. Whatever I was told to do, I was doing more, and it was because I always thought back that I’ve got to prove people wrong.”

The Crucial Role of a Collaborative Team

Dr. Krekeler remains proud of Kevin and the collaboration of the UC Health team.

“When we met Kevin, he could not even swallow his saliva. By the end of therapy, he was eating sushi in the office. Kevin is the perfect example of what is possible when you have a collaborative team between surgery and therapy. Dr. Howell’s surgery primed the tissues and muscles to learn how to move in a new pattern to facilitate swallowing, then the speech-language pathology team could work together with Kevin to re-train him how to swallow. Kevin is the reason he recovered. He did everything we asked him to do at home. 

A lot of patients come to therapy thinking that they will be “fixed” in 1-3 sessions a week, but the reality is to re-train something as automatic as swallowing you must practice, practice, and practice more. Kevin did the work and followed every guidance we provided him, that is why he was so successful and still is today.”

Embracing Life Post-Stroke: Kevin's New Normal

Today, Kevin continues to navigate weakness on his left side, minimal feeling on his right as well as balance issues.  But he continues to preserve. He does weekly personal training, rides an e-bike, plays disc golf, and works as a sales associate and mechanic at a local cycling shop.

“Two years ago, I was basically a brain and a body…I can't control what happened in the past. All I can control is my path forward and I just keep trying my best and it's to make people like Dr. Brittany, Angela, and Dr. Howell proud of where I'm at today.”