What Are the Primary Warning Signs of Locked-In Syndrome?

There are no warning signs for locked-in syndrome. The only signs that someone may have locked-in syndrome include waking from a coma but remaining paralyzed and unable to communicate. Locked-in syndrome commonly occurs following a stroke or brain hemorrhage that affects the brainstem, although it can occur because of a traumatic brain injury.

Signs and Symptoms of Conditions That Can Lead to Locked-in Syndrome

There is no way to see locked-in syndrome coming before it happens. What families can do is recognize the signs of the underlying conditions that lead to it, since fast recognition and emergency care can shape how much brainstem damage occurs. Stroke is by far the most common cause of locked-in syndrome, but several other conditions can damage the brainstem in similar ways. Below is a breakdown of each, along with the signs associated with it.

Stroke

Stroke, particularly one that affects the basilar artery or the pons, is the most common cause of locked-in syndrome. Because a stroke can begin producing brainstem damage within minutes, recognizing the signs early and calling 9-1-1 gives a person the best chance of limiting the extent of injury.

Signs of stroke include:

• Sudden numbness or weakness in the face, arm, or leg, often on one side of the body
• Slurred speech or trouble speaking
• Trouble understanding what others are saying
• Sudden vision problems in one or both eyes
• Sudden loss of balance, dizziness, or coordination problems
• A sudden, severe headache with no known cause

The acronym BE FAST (Balance, Eye/vision problems, Face drooping, Arm weakness, Slurred speech, Time to call 9-1-1) can help people identify a stroke before it’s too late.

Brain Hemorrhage

Bleeding in or around the brainstem, whether from a ruptured blood vessel or an underlying vascular condition, can compress or destroy the tissue responsible for movement and speech.

Signs of a brain hemorrhage include:

• A sudden, severe headache, often described as the worst the person has ever felt
• Rapid decline in alertness or sleepiness
• Nausea or vomiting with no clear cause
• Weakness or paralysis that develops quickly
• Unequal pupil size
• Vision changes

Traumatic Brain Injury (TBI)

An injury to the head, whether from a fall, a vehicle collision, or another impact, can damage the brainstem directly or cause swelling and compression following the injury. Traumatic brain injury is recognized as a common cause of locked-in syndrome after vascular events like stroke.

Signs of a serious TBI include:

• Loss of consciousness following a head injury, even briefly
• Confusion or disorientation that does not resolve
• Unequal pupil size or abnormal eye movement
• Weakness or paralysis that develops after the injury
• New difficulty speaking, swallowing, or breathing
• Repeated vomiting after a head injury

Central Pontine Myelinolysis

Central pontine myelinolysis (CPM) develops when sodium levels in the blood are corrected too quickly after a period of being too low, causing damage to the pons. Unlike stroke, it typically unfolds over several days rather than in an instant, often shortly after a hospital stay.

Signs of central pontine myelinolysis include:

• Progressive weakness in the arms and legs over several days
• New difficulty speaking or swallowing
• Confusion that worsens over time
• Progression to near-total paralysis in severe cases

Brain Tumor

A tumor growing in or pressing on the brainstem can gradually damage the same pathways affected by stroke or trauma, though the onset is typically slower and easier to miss at first.

Signs of a brainstem tumor include:

• Coordination problems
• Progressive difficulty speaking or swallowing
• Persistent headaches, sometimes worse in the morning
• Vision changes, including double vision
• Loss of feeling in an arm or leg

Infections

Certain infections can reach the brainstem and cause inflammation or direct damage to the tissue that controls movement and speech. Symptoms can depend on the type of infection and where it is located.

ALS (Amyotrophic Lateral Sclerosis)

ALS is a progressive disease that gradually damages the nerve cells controlling voluntary muscle movement. In its most advanced stage, some patients experience a locked-in state as the disease reaches the muscles involved in speech, swallowing, and breathing.

Signs associated with advanced ALS include:

• Gradually worsening muscle weakness over months or years
• Muscle twitching or cramping
• Slurred speech that worsens over time
• Increasing difficulty swallowing or breathing
• Progressive loss of voluntary movement

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What Are the Symptoms of Locked-In Syndrome?

Following a stroke, the patient’s family members are often the first to suspect locked-in syndrome. If you believe your loved one is experiencing some or all of the following, talk to their doctor immediately about your concerns:

• Quadriplegia
• Global paralysis including no response to painful stimuli
• Vertical eye movements and blinking
• A change in breathing patterns when family members walk in
• Fully alert and aware of those around them
• Full cognitive functioning

Should My Loved One’s Doctor Have Seen and Acted On These Symptoms?

In many cases, yes. The signs of stroke, brain hemorrhage, and traumatic brain injury described above are well established in medical literature, and a hospital care team is expected to recognize them and respond quickly. When those signs are missed, dismissed, or acted on too slowly, the delay can directly affect how much brainstem damage a patient sustains, and in some cases, whether locked-in syndrome develops at all.

That said, the answer is rarely simple. A few things can make it genuinely difficult to know, without a closer look, whether a doctor’s response fell short:

• Early symptoms can look like something else. In the first hours after a stroke or brain injury, a patient may present with symptoms that overlap with less serious conditions, and some decline is gradual enough that it is only clear in hindsight that something more serious was underway.
• Locked-in syndrome itself is easy to misread. Because the patient cannot move or speak, a care team can mistake locked-in syndrome for a coma or a persistent vegetative state, especially in the early hours, which can affect how quickly the right diagnostic steps are taken.
• Some deterioration cannot be stopped even with excellent care. Certain strokes and hemorrhages progress so quickly that even a fast, correct response would not have changed the outcome. This is why every case has to be looked at on its own facts rather than assumed one way or the other.

Because of this complexity, families are often left without a clear answer simply from talking to the hospital that provided care. This is where an independent medical review can help. A locked-in syndrome lawyer from our firm will work with an independent medical expert to review your loved one’s complete medical record and evaluate whether the care team recognized the warning signs in time and responded the way a reasonably careful provider should have.

If that review shows the standard of care was met, we will tell you honestly. If it shows otherwise, we can help you understand what options may be available.

There is no cost or obligation to have your loved one’s case reviewed this way.

Pursuing Compensation for Locked-In Syndrome

In some cases, you may be able to pursue compensation for damages related to your loved one’s condition. If medical malpractice or a personal injury accident contributed to your loved one’s condition, the team from Newsome Law is standing by to review your case for free. Recoverable damages could include:

• Medical treatment costs
• Ongoing care costs
• Lost wages and diminished earning capacity
• Pain and suffering
• Mental anguish

Let our team take a look at your case today. Call today for a free evaluation.

Read more about Rich Newsome

Rich Newsome

Catastrophic Injury Locked-In Syndrome Attorney

Rich Newsome is a dedicated attorney specializing in catastrophic injury and medical malpractice cases. With over 25 years of experience, she is committed to advocating for victims and their families, ensuring they receive the justice and compensation they deserve.