Locked-In Syndrome

Woman looking through keyhole
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One of the most unusual stroke types is a stroke that produces a devastating condition known as locked-in-syndrome. It is a major stroke, despite the fact that it only affects a very small portion of the brainstem. Locked-in-syndrome is one of the brainstem strokes, and like the other brainstem strokes, locked-in-syndrome produces an unusual collection of neurological problems. While a brainstem stroke is usually small in size, it can have a major impact on the body because all of the connections between the brain and the spinal cord run through the brainstem.

What is Locked-in-Syndrome?

Locked-in-syndrome is also called central pontine syndrome. It is caused by damage to a region of the brainstem called the pons.

What are the Symptoms of Locked-in-Syndrome?

Locked-in-syndrome is a stroke that causes considerable handicaps. People who suffer from locked-in-syndrome are paralyzed in both arms, paralyzed in both legs and paralyzed in the whole face. Therefore a person with locked-in-syndrome cannot move or speak.

Yet, individuals with locked-in-syndrome have the ability to think, move their eyes, blink and read. This is what gives it the name- a person with normal ability to think feels locked into his own body, practically unable to communicate with the world around him.

This makes it a particularly frustrating illness.

People with locked-in-syndrome generally have only one way to interact with others - by using eye movements and blinking patterns to communicate with others in code.

What Causes Locked-in-Syndrome?

A tiny stroke caused by interruption of blood flow through a small section of the basilar artery, which supplies blood to the pons of the brainstem, can cause locked-in-syndrome.

A few other medical problems can damage the pons, one of which is called central pontine myelinolysis.

Central pontine myelinolysis is a reaction that occurs when a person undergoes an extreme change in the body's sodium level. This is a rare event that may happen after severe fluid loss or rapid IV fluid or sodium correction.

A few other causes of locked-in-syndrome include an ALS-like disease or cancer spreading to the pons.

What Can You Do?

If you or a loved one has locked-in-syndrome, you might improve due to healing and recovery of the brain. In the meantime, absolutely the best and most careful medical care is needed to prevent the complications of being bed ridden. This includes proper nutrition, adequate fluids, and prevention of blood clots.


This is obviously the most challenging part of locked-in-syndrome. Once a pattern of communication is established, while it can be frustrating and exhausting to converse only through eye movements, it is a relief for everyone that a loved one has a way to interact with others.

Quality of Life

While some people who suffer from locked-in-syndrome may improve, most do not get significantly better.

Surprisingly, a study of the quality of life of survivors with locked- in-syndrome found that patients themselves described a better quality of life than their caregivers or doctors expected. In fact, the researchers reported that the overall quality of life of people with locked-in-syndrome was equal to age matched healthy controls. It is hard to explain this unusual result in light of the severe disability, but perhaps there is some type of inner peace or contentment among people with locked-in-syndrome. The study did find one factor related to quality of life, which is that support from caregivers and loved ones elevates the quality of life of a person with locked-in-syndrome.

New Technology and Locked-in-Syndrome

New technology can help locked-in-syndrome survivors participate in some of the social aspects of life and even lead fulfilling, productive lives. For example, a brain-computer interface device can help improve life satisfaction once the patient and family members learn how to use the technology.


Long-term independent brain-computer interface home use improves quality of life of a patient in the locked-in state: a case study, Holz EM, Botrel L, Kaufmann T, Kübler A, Archives of Physical Medicine and Rehabilitation, March 2015

Lule D, Zickler C, Hacker S, Bruno MA, Demertzi A, Pellas F, Laureys S, Kubler A, Life can be worth living in locked-in syndrome, Progress in Brain Research, 2009

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