Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks About
Ty Hawkins was taking engagement photos with his wife the same day he was admitted to the ICU.
That sentence alone captures something essential about brainstem stroke, and about the particular cruelty of its long-term effects. On the outside, Ty looked like a young man in love, celebrating a milestone. On the inside, his vision was blurring, his balance was failing, and one side of his face had begun to droop. By nightfall, he was in the hospital being told they had found a mass on his brain.
That was June 2019. Ty was in his mid-twenties, working in sales at Verizon, playing competitive basketball, and building a life with the woman he was about to marry. The stroke caused by a bleed from a cavernous malformation in his brainstem carried a 25% survival rate. Of those who survived, only 10% made a significant recovery.
Ty is now approaching year seven. He returned to work. He speaks publicly. He shares his story with a global audience that finds him through social media and reaches out to tell him he helped them keep going.
And every single day, he still wakes up managing deficits that most people around him cannot see.
What the Brainstem Controls — And Why Its Damage Lingers
The brainstem is not a dramatic structure in the way the cortex is. It doesn’t govern language, memory, or personality in ways that are immediately visible to an observer. What it governs is more fundamental: breathing, heart rate, digestion, balance, coordination, and the relay of sensory signals between the brain and the body.
When a bleed occurs in the brainstem, as it did for Ty through a cavernous malformation, a cluster of abnormally formed blood vessels, the damage disrupts those foundational systems. The effects can be wide-ranging, deeply personal, and stubbornly persistent. They can also be almost entirely invisible to anyone who isn’t living inside that body.
For Ty, the long-term effects of his brainstem stroke include ataxia, double vision, gastroparesis, CRPS, and left-sided numbness and weakness. None of these are visible when he walks into a room. All of them shape his daily experience in ways that most people, including many in the medical system, never fully appreciate.
Gastroparesis After Stroke: The Deficit Nobody Mentions
Of all the long-term effects Ty lives with, gastroparesis is perhaps the least discussed in stroke recovery conversations and one of the most disruptive to daily life.
Gastroparesis is a condition in which the stomach empties too slowly or incompletely, caused by disrupted communication between the brain and the vagus nerve. For Ty, this means the digestive signals that most people take for granted, hunger, fullness, and discomfort, are unreliable. He can eat three bites and feel as though he has finished a six-course meal. He can go hours without a hunger signal and needs to eat by clock rather than by sensation. When his nervous system is overwhelmed, his digestive system slows or stalls entirely.
Gastroparesis after stroke is not a fringe experience. The brainstem governs the vagus nerve, which in turn governs gut motility. A brainstem stroke can interrupt that pathway in ways that create persistent digestive dysfunction, yet it rarely features in the standard conversations about stroke recovery. Survivors can spend years not understanding why their digestion is erratic, not connecting it back to the stroke, and not receiving targeted support.
Ty found that movement and routine helped regulate his system. A morning sauna, regular exercise, and starting the day with warm tea and light fruit rather than a heavy meal gave his digestive system conditions in which it could function more predictably. These are not medical solutions, they are adaptive strategies built through seven years of learning his own body.
CRPS and Ataxia: When the Nervous System Won’t Stand Down
“My daily pain level is a four or five. Someone not used to chronic pain would call it an eight or a nine.” — Ty Hawkins
Complex Regional Pain Syndrome (CRPS) was misdiagnosed in Ty for several years as neuropathy. It presents as the brain becoming stuck in a fight-or-flight pain loop, sending persistent, amplified pain signals in response to stimuli that should not be painful at all. For Ty, this means clothing fabric can register as pain. Cold bed sheets can spike his discomfort through the roof. Water on his skin can hurt.
Ataxia compounds this by disrupting muscle coordination when his nervous system becomes overwhelmed. His gait changes. His shoulder shakes when lifting overhead. Coordination that was once automatic, honed through years of competitive basketball, becomes unreliable when fatigue, overstimulation, or stress tips his nervous system past a threshold.
Both conditions are neurological in origin. Both are invisible to the outside observer. Both require constant, conscious management.
The Athletic Mindset as Recovery Infrastructure
What gave Ty the internal architecture to manage all of this? He credits his coaches.
Years of athletic training being pushed past comfort, being held to a standard of effort regardless of natural talent, learning that showing up and doing the work was non-negotiable, built in Ty a psychological framework that translated directly into rehabilitation. In the inpatient facility, he was wheeling himself to therapy sessions before the nurses came to collect him. After the first week, they stopped coming. They knew he would already be there.
As the doctors noted during his rehabilitation: he was recovering faster than expected, and they attributed it directly to his athletic background. Not his talent. His work ethic.
The Emotional Cost of Looking Fine
Perhaps the most underappreciated long-term effect of Ty’s brainstem stroke is the one least visible of all: the emotional toll of presenting as healthy while carrying a daily invisible burden.
For years, Ty’s type-A, athletic identity kept him moving forward, but it also kept him from fully acknowledging what he was carrying. It took until years three or four before he genuinely engaged with psychotherapy. Once he did, the progress he experienced was significant. He now starts every Monday with a therapy session.
The shift that mattered most was learning to honour how he actually felt rather than how he wanted to feel. For male survivors in particular, the cultural conditioning to tough it out is deeply ingrained and actively harmful in the context of long-term stroke recovery. Emotional suppression does not make the load lighter. It makes it invisible to everyone, including the person carrying it.
Recovery Has No Expiry Date
Ty’s most direct message to survivors is straightforward: don’t limit your recovery to the first year. The brain does not set a deadline on neuroplasticity. He is approaching year seven and still noticing improvements.
The triumph of this story is not that Ty is symptom-free. The triumph is that he has built a life of genuine meaning and contribution around an ongoing physical reality without pretending that reality doesn’t exist. He’s reached people on every continent with a message that is simple, honest, and badly needed:
You can survive the statistics. You can carry the hidden weight. And you can keep getting better years after everyone else assumes the story is over.
If you are navigating your own stroke recovery early or years in, Bill’s book is a practical and honest companion for the journey: recoveryafterstroke.com/book
And if the Recovery After Stroke community has been part of your path, consider supporting the show on Patreon: patreon.com/recoveryafterstroke
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Ty Hawkins: Six Years After a Brainstem Stroke, Still Fighting the Battles You Can’t See
He survived a 25% chance brainstem stroke. Nearly 7 years on, Ty Hawkins reveals the hidden deficits that never made the headlines until now.
Highlights:
00:00 Introduction: Long-Term Effects of Brainstem Stroke
05:54 The Day of the Stroke
11:35 Hospital Experience and Diagnosis
15:44 Mindset and Recovery
21:46 Therapy and Rehabilitation
24:25 Long-Term Effects of Brainstem Stroke
32:58 The Importance of Exercise in Recovery
38:21 Living with CRPS: A Daily Challenge
50:29 Emotional Resilience and Mental Health
01:01:28 Lessons Learned: Recovery Insights for Stroke Survivors
