Locked-in syndrome affects the pons, an area of the brain stem that helps transmit signals between the brain and spinal cord. The pons plays a significant role in muscle movement. When you a muscle, the signal starts in your brain and passes through the pons to your spinal cord, which relays it to the muscle. Damage to the pons short-circuits this process, often resulting in partial or total paralysis. The most severe form of pons-related paralysis is locked-in syndrome.
With locked-in syndrome, your damaged pons no longer can relay signals from your brain to your spinal cord. So, when you try to move a muscle, it never gets the signal. Since damaged brain cells do not regenerate themselves, locked-in syndrome is almost always permanent, though rare cases of patients making full recoveries have occurred.
What Locked-In Syndrome Is Like
Locked-in syndrome causes paralysis to every voluntary muscle except the ones controlling eye movement. It is like quadriplegia and then some because the facial muscles are also affected. Some patients do not even have full eye movement and can only look up and down, not side to side.
While locked-in syndrome takes away almost all of a person’s physical capabilities, it does not affect eyesight, hearing or cognitive function. So, an affected person can hear you, see you, and understand everything going on around them. But the only way they can communicate is through subtle eye movements.
Other Effects of Locked-In Syndrome
People with locked-in syndrome can think clearly, and they usually have regular sleep/wake cycles as well. They retain their hearing, but have obvious difficulty responding to what they hear or even acknowledging that they understood it. They cannot swallow or even breathe on their own, as these actions require the use of voluntary muscles. Therefore, they must be fed through a tube and must have a tracheotomy so that a breathing machine can be installed.
Since daily living activities are impossible to perform with locked-in syndrome, patients require around-the-clock care.
How Locked-In Syndrome Happens
Locked-in syndrome happens when the pons suffers damage, usually due to either lack of oxygen or bleeding in the brain. This can occur for several reasons, some beyond anyone’s control, others preventable. A stroke, aneurysm, embolism, blood clot, or infection may cause brain bleeding that leads to severe enough pons damage to trigger locked-in syndrome. Medical events such as these often occur without warning and with little to no way to prevent them.
Chronic medical conditions such as ALS (Lou Gehrig’s syndrome) also can deteriorate the pons and cause locked-in syndrome. But some cases are entirely preventable, such as when medical negligence is a factor. If your loved one developed locked-in syndrome after having surgery or receiving medical care, you may have grounds for a medical malpractice lawsuit. Call Pintas & Mullins at 800-916-7333 for a free consultation.
Treatment for Locked-In Syndrome
Locked-in syndrome is almost always permanent, with patients never recovering any muscle movement. For the tiny percentage who do recover the use of certain muscles, it is usually minimal movement in the fingers or toes — certainly nothing that makes a substantial impact on their functional capabilities or quality of life.
Therefore, treatment of locked-in syndrome focuses on adapting to the condition, not beating it. And the best way to adapt is for patients as well as their loved ones and caregivers to learn communication techniques. Since patients can communicate only with their eyes, these techniques involve different patterns of movement to convey different thoughts and ideas.
During the process of learning to communicate, loved ones and caregivers should be very patient, as it is not easy — especially for the patient. It is like learning a new language. But the payoff in quality of life makes the effort well worth it.
Quality of Life for People With Locked-In Syndrome
Although locked-in syndrome may sound like the stuff nightmares are made of, studies suggest most patients are capable of adjusting to it and leaving meaningful, even happy lives. In fact, in a survey looking at quality of life metrics among those with locked-in syndrome, patients reported much higher scores than anticipated.
But the condition is undeniably devastating, even life-shattering, and you deserve compensation if your loved one developed it because of someone else’s error. A medical malpractice attorney from Pintas & Mullins can help.
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