Is Locked-in Syndrome Common?

Locked-in syndrome is not common. In fact, it’s an extremely rare condition with an estimated 1,000 cases in the United States, according to Healthline. However, with no international or national agency tracking this condition, the actual prevalence could be much higher. Many cases of locked-in syndrome may also go unrecognized or misdiagnosed.

What Is Locked-In Syndrome?

Locked-in syndrome most often occurs when there is an injury to the brainstem. With locked-in syndrome, victims suffer both quadriplegia and the inability to communicate verbally. They are typically only able to blink and move their eyes. Many require assistance with autonomic functions such as breathing. They remain alert and aware, and their cognitive abilities are intact.

How It Impacts the Person and Their Family

Locked-in syndrome most often results from a stroke affecting the brainstem, which is the area of the brain responsible for relaying signals to the muscles that control movement and speech. Because the stroke affects motor pathways rather than the areas responsible for thought, awareness, or memory, the person’s mind remains intact. They can typically:

• See
• Hear
• Think
• Understand everything happening around them

What changes is their ability to move or speak.

This distinction is central to understanding locked-in syndrome and to caring for someone who has it. The person inside is still there. They are aware of their surroundings, aware of conversations, and aware of the people who love them, even when they cannot show it in the ways families are used to. Recognizing this awareness and continuing to include the person in family life and decision-making is one of the most meaningful things loved ones can do.

For families, the early period after diagnosis often brings a mix of grief and disorientation. The person they love looks profoundly changed, but is, in the ways that count most, still present. Adjusting to this reality takes time, patience, and support from a care team that understands the condition well.

In most cases, people with locked-in syndrome cannot speak or move their limbs. Communication instead develops around the muscles that often remain under voluntary control, most commonly the eyes. With practice, many families build reliable communication systems using:

• Eye movement or blink codes, where a set number of blinks or glances represents “yes,” “no,” or specific letters on a letterboard
• Eye-gaze and eye-tracking devices, which allow the person to spell out words or select options on a screen using eye position alone
• Brain-computer interface technology, an emerging option that reads neural signals directly, allowing some patients to communicate without relying on eye movement at all

With the right combination of tools, therapy, and caregiver training, many families find that a rich, connected relationship with their loved one remains possible. Communication becomes slower and more deliberate, but it does not disappear.

Understanding the Cost of Care for LIS

Locked-in syndrome typically requires an intensive, long-term level of support, often including skilled nursing care, feeding and respiratory assistance, and specialized communication equipment. Costs vary widely by region and by the person’s specific medical needs, but national survey data offers a general reference point for what families can expect to plan for.

Source: Genworth

These costs differ by state and by city. Some states are substantially higher than the national average while others are lower.

Causes of Locked-In Syndrome

While damage to the brainstem through illness or injury is a common cause of locked-in syndrome, there are several potential causes of locked-in syndrome. Some causes of this condition may include:

• Strokes affecting the brainstem
• Brain hemorrhage involving the basilar artery, which supplies blood to the brainstem
• A lesion or tumor on the brainstem
• Traumatic brain injury, often involving the brainstem
• Poisoning, including snake bites with neurotoxic venom
• Damage to nerve cells or the myelin sheath, including osmotic demyelination syndrome/central pontine myelinolysis

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Diagnosing Locked-In Syndrome

Locked-in syndrome is sometimes difficult to diagnose. Those who have the condition suffer quadriplegia, limited movement of the head and face, and an inability to communicate verbally. However, they are alert and cognitively intact. Unless doctors run the right tests, the victims may be aware of what is going on around them but unable to communicate with their doctors or family members.

Doctors must pair neurological exams with tests of brain activity such as an electroencephalogram (EEG). If the EEG shows normal brain activity, the doctor can begin to develop communication with the patient through blinking or vertical eye movement.

Locked-in syndrome is often diagnosed after a family member suspects their loved one can understand them and raises concerns about their alertness.

Treatment and Care for People With Locked-In Syndrome

There is no known treatment or cure for locked-in syndrome. It is unusual for someone with locked-in syndrome to make a significant recovery of motor function, although there are a handful of documented cases.

Treatment for locked-in syndrome strives to prevent bedsores, pneumonia, and other complications, as well as improve quality of life. Often the most significant advances in quality of life occur with the help of technology, specifically eye-gaze devices and brain-computer interface devices to aid communication. Lifts and customized wheelchairs can also make it possible for those with the condition to remain at home with their family.

Pursuing Compensation for Locked-In Syndrome

If someone else’s negligence caused your loved one’s condition, you may be eligible to pursue compensation for expenses and losses related to their injuries. Our legal team offers free case reviews. We can investigate the care your loved one received and determine whether it met the standard of care for the specific industry.

If it did not and you want to take legal action, we can help you build a strong case to support the pursuit of compensation for a wide range of damages. This may include your expenses and losses from the initial incident, as well as ongoing care costs. Some of the most common damages in a personal injury case include:

• Medical care
• Ongoing and future care
• Lost wages
• Diminished earning capacity
• Related out-of-pocket costs
• Pain and suffering
• Mental anguish

To learn more about your eligibility to pursue compensation on behalf of your loved one diagnosed with locked-in syndrome, contact our firm. We offer free case evaluations for the families of those with locked-in syndrome and similar conditions.

Let Us Help After a Locked-In Syndrome Diagnosis

In some cases, you may be eligible to take legal action on behalf of your loved one with a locked-in syndrome diagnosis. A locked-in syndrome attorney from Newsome Law will evaluate your case and can explain your legal options. Call us today to get started with your complimentary case review with a member of our team.

You pay nothing unless we recover compensation for your family.

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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.