The overwhelming majority of patients with locked-in syndrome never make a full recovery. Most never make any improvement, even a small or incremental one.
There are cases of patients completely reversing the condition, but they are exceedingly rare and usually happen because the underlying cause is treatable and gets addressed within hours of onset. Somewhat more common are patients who regain very limited muscle movement, such as in the fingers and toes.
Locked-in syndrome is permanent for most patients because of irreversible damage to the brain stem. Unlike other areas of the body, brain cells do not regenerate when destroyed.
The Basics of Locked-In Syndrome
Locked-in syndrome is a neurological disorder causing paralysis to every voluntary muscle except the ones controlling eye movement. The pons is a part of the brain stem responsible for conveying nerve signals between the cerebellum and the spinal cord. These signals relay messages from the brain telling muscles to move. Locked-in syndrome occurs when the pons is damaged.
The movement of a muscles does not originate in the muscle itself. It starts in the brain. Even if you do not consciously think about putting one foot in front of the other when walking, your brain tells your muscles to do just that by sending signals via nerve passageways. When the pons gets damaged and cannot relay these signals to the spinal cord, muscles do not receive messages from the brain on when to move, and paralysis results.
The Symptoms of Locked-In Syndrome
Locked-in syndrome causes total paralysis other than the ability to move the eyes vertically and sometimes horizontally. An affected person cannot talk, swallow, smell, or even breathe on their own (most require the use of a breathing assistance device via a tracheotomy).
People with locked-in syndrome do, however, retain some abilities and functions. The condition does not affect cognition, nor does it rob patients of their hearing. That means a patient can hear what you are saying, understand it, and have a definite opinion on what they heard. It is in communicating their opinions or thoughts — or even acknowledging that they understand you — that the difficulty lies.
How Common Is It to Recover From Locked-In Syndrome
Making a full recovery from locked-in syndrome is exceedingly rare. In some instances, such as when the condition results from a treatable condition such as a basilar artery blood clot, the patient can reverse it by addressing the underlying cause. But the patient must treat the issue promptly — usually within a few hours — and most causes of the condition are not reversible no matter how quickly treatment is. Therefore, the best most patients can hope for is to learn to adjust to life with locked-in syndrome.
By learning to communicate with caregivers and loved ones, people with locked-in syndrome can enjoy a higher quality of life than one might expect. The help of a qualified therapist can go a long way toward helping patients and their families develop a coded communication system whereby patients convey their thoughts and respond to others via different eye movement patterns.
A Person Can Enjoy Life With Locked-In Syndrome
Locked-in syndrome is a devastating medical condition. It completely hinders a person physically. Hearing it described, one might be tempted to think that every waking moment with locked-in syndrome is equivalent to being in a nightmare. A patient can hear, see, and think clearly, but cannot move or speak. While it may sound terrifying, people with locked-in syndrome are not as miserable as you might expect.
Researchers have evaluated people with locked-in syndrome, and what these studies found is that they report greater satisfaction with life than those with terminal illnesses.
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