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Brain Stem Stroke: How It Affects the Body & What to Expect

medical illustration of brain with brain stem highlighted at the base

A stroke in the brain stem is a unique type of stroke. Of course, all strokes are unique, because every stroke is different. But brain stem strokes are particularly different in terms of symptoms and recovery.

The brain stem is just one half inch in diameter. Due to its small size, most brain stem strokes are relatively small, but the effects can be significant. Fortunately, intensive rehabilitation often helps individuals regain function.

This article will outline the symptoms, secondary effects, and rehabilitation process for brain stem stroke recovery. At the end, we’ll share a couple stories from real brain stem stroke survivors to illustrate how others have overcome the challenges of this type of stroke.

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How a Stroke Affects the Brain Stem

When a stroke occurs in the brain stem, the supply of blood becomes compromised by a clogged artery (ischemic stroke) or burst artery (hemorrhagic stroke). With an ischemic stroke in the brain stem, it can be further classified as a lacunar stroke. This is a medical emergency because brain cells begin to die from a lack of oxygen-rich blood.

A stroke can occur in any of the three major areas of the brain stem: the midbrain, pons, and medulla. Furthermore, some strokes that injure the brain stem also affect the cerebellum (located behind the top part of the brain stem) or other surrounding areas.

When a brain stem stroke occurs, it can cause atypical symptoms like vertigo and nausea. These are much different than the hallmark symptoms of a stroke, such as slurred speech and arm weakness. As a result, brain stem strokes can be difficult to diagnose.

As with all strokes, the event is a medical emergency that requires swift treatment to save the person’s life.

After a stroke has been treated, the patient must work to overcome the secondary effects that occur. These effects vary greatly among survivors, which we will discuss next.

Potential Secondary Effects of Brain Stem Stroke

The brain stem plays a major role in basic bodily functions, such as breathing, consciousness, and heart rate. Therefore, the secondary effects of a brain stem stroke can impact these functions, and others.

Here are some of the possible secondary effects of a stroke in the brain stem:

  • Coma. Because the brain stem controls states of consciousness, a stroke in the brain stem can result in a coma.
  • Locked-in syndrome. This severe medical condition occurs when an individual is completely paralyzed, except for the eyes.
  • Difficulty breathing. Breathing is controlled by the medulla, which is part of the brain stem. A stroke in this area can affect the ability to breathe.
  • Dysphagia. Difficulty swallowing (a condition called dysphagia), is common after a brain stem stroke. One study found that 81% of brain stem stroke survivors exhibited dysphagia during the first 10-75 days after the stroke. Fortunately, follow-ups showed that many regained the ability to swallow.
  • Vision problems. Vision difficulties, such as nystagmus (when the eye makes repetitive, uncontrolled movements), can occur after brain stem stroke.
  • Ataxia. Ataxia refers to difficulties with voluntary motor control, often resulting in poor balance and uncoordinated movements of limbs. Ataxia is a condition specific to damage to the cerebellum and surrounding areas like the brain stem.
  • Wallenberg’s syndrome. This rare condition refers to ataxia on the same side of the body as the injury.
  • Loss of sensation. This can include loss of smell and taste, difficulty sensing temperature, numbness, and other sensory issues.

Next, let’s look at the outlook for a brain stem stroke.

Outlook and Prognosis

Every stroke is different, and every survivor experiences the secondary effects differently.

For instance, some individuals may struggle with smells and taste while others require a ventilator to assist with breathing. It all depends on unique factors specific to every individual.

Fortunately, if the survivor participates in long-term rehabilitation, they can often regain significant function.

Here’s what Dr. Richard Harvey, Clinical Chair of the Brain Innovation Center at the Shirley Ryan AbilityLab, said about brain stem stroke recovery:

The typical brain stem stroke is not a massive stroke… Although, if you are locked-in, you could call that a massive stroke, although the injury itself is very small.

But for the most part, strokes in the brain stem have really nice improvement… with proper rehabilitation, of course.

– Dr. Richard Harvey

This doesn’t mean that every survivor will have really nice improvement, but it means there’s hope.

Up next, you’ll learn more about the rehabilitation process after a stroke.

Rehabilitation for Brain Stem Stroke Patients

After the initial stay in the hospital, many stroke survivors spend time in inpatient rehabilitation, where they participate in 3-4 hours of therapy per day. During this time, a team of therapists (including physical, occupational, and speech therapists) work with survivors to regain lost functions.

For instance, if a stroke survivor struggles with loss of sensation (like numbness or difficulty with smell and taste), an occupational therapist can help them with sensory retraining. This therapy helps retrain the brain to process sensation.

If the survivor struggles with locked-in syndrome, therapists can help the survivor accomplish passive range-of-motion exercises to help stimulate the brain and encourage recovery.

One of the overarching goals during rehabilitation is to spark neuroplasticity: the brain’s ability to rewire itself. Although it’s impossible to revive dead areas in the brain, neuroplasticity allows new areas of the brain to take on lost function.

It takes hard work and consistency, because neuroplasticity is activated through massed practice. This involves practicing the skills you want to improve on a regular basis.

This means that, after discharge from inpatient therapy, it’s imperative that stroke survivors continue with rehabilitation both at home and at outpatient therapy. To stay motivated and consistent, survivors can look into interactive neurorehabilitation devices that can be used at home.

Sometimes it helps to learn from the experiences of other brain stem stroke survivors to see how they were affected and how they recovered. Recovery is highly unique, so keep this in mind when reading other survivors’ stories.

Brain Stem Stroke Survivor Stories

Flint Rehab has had the pleasure of speaking with various brain stem stroke survivors to learn about their experiences, and we’d like to share a couple of those stories with you.

First, we’d like to share from Becky, who experienced a brain stem stroke at the end of November 2007.

Initially, she was paralyzed from the neck down; and now she is able to move her body again. Not all patients can recover from locked-in syndrome like Becky, but she shows that recovery is possible. Check out her story in the video below:

Next we spoke with a stroke survivor named Luke, who experienced a brain stem stroke in July 2019. Here’s what he said:

I was in a coma for six days. Some people thought I was never going to wake up. And I wasn’t supposed to. But I did, and I’ve been recovering ever since.

I had to re-learn everything. How to walk, how to talk, how to eat, basic human functioning. I was confined to a wheelchair for two months, and I learned how to walk again with an AFO around my left leg, which I actually got removed a couple months ago.

They discharged me from the hospital in September 2019, and I’ve been doing outpatient therapy ever since. As of right now, I have a job, and my doctors have cleared me to take some online college classes to prepare me for my return to college.

My rehab consisted of three different kinds of therapies: physical, occupational, and speech. I’ve been doing rehab for over a year now, and it started a couple days after I got out of the hospital.

As of right now, I have graduated from all therapies and have taken an intense neuropsych evaluation (which I didn’t do so well on), which was going to clear me for college, but it didn’t.

But all in all, I’ve been participating in rehab for over a year now, as brain stem injuries take a long time to heal (so I’ve learned).

I wanted to share my story so that people can learn from it and never give up on anything, because if you do, you’re only holding yourself back from growing.

– Luke Caputo, 12/4/2020

Luke intends to try again to return to college, and overall has made significant progress in just one year post-stroke.

We hope these recovery stories help shine some light on how other survivors were affected by a stroke in the brain stem, and how intensive rehabilitation helps with recovery.

Not all stroke survivors will experience these same results, but it’s important to try. Believing that recovery is possible will motivate you to take action, which is how results are made.

Persevering on the Road to Recovery

The road to recovery looks different for everyone. Fortunately, survivors can regain lost function, at least partially, through intensive rehabilitation.

With enough hard work, patients can often make remarkable recoveries, like Becky and Luke.

We hope this article helped illustrate how a stroke affects the brain stem, and what to expect on the road to recovery.

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“My name is Monica Davis but the person who is using the FitMi is my husband, Jerry. I first came across FitMi on Facebook. I pondered it for nearly a year. In that time, he had PT, OT and Speech therapy, as well as vision therapy.

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When you beat your high score or unlock a new exercise, FitMi provides a little “woo hoo!” as auditory feedback. It’s oddly satisfying and helps motivate you to keep up the great work.

In Jerry’s photo below, you can see him with the FitMi pucks below his feet for one of the leg exercises:

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