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Locked in Syndrome

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Locked in Syndrome

Locked in Syndrome (LiS) is a rare neurological disorder that normally is the result of a lesion to a part of the brain stem which is called the pons (Keen, 2017). This rare disorder can also be the outcome of other things such as, an infection to a portion of the brain, a tumor, a loss of protective insulation that covers the nerve cells, inflammation of nerves, or in certain disorders such as ALS (Keen, 2017). All of these can cause disruption of the motor fibers that run from the grey matter in the brain through the spinal cord (Keen, 2017). This disruption of the motor fibers causes the body’s muscles to stop functioning as they normally would, and also it can damage parts of the brainstem which is important for facial control, chewing, swallowing, even breathing (Keen, 2017). Although, the person affected with locked in syndrome, most of the time will still remain conscious and have control of eye movement. Although, there have been some rare cases where the individual makes a full recovery, but most people who suffer from this disease, do not. Eye movement is vital in this syndrome, as it is one of their only ways to communicate with anyone. Locked in Syndrome used to be a disease that most people did not know much about, even doctors, in the early 2000’s. Now, with advancements in technology and new studies being conducted every day, more information is being discovered.

Feeding and breathing can be difficult after someone suffers a stroke or is diagnosed with Locked in Syndrome. This is because immediately following a stroke, most of the time the person will not have control or be able to move their jaw or mouth, causing them to be unable to chew (Maiese, 2017). They are fed through a tube until they regain any movement in their mouth. A majority of patients are slowly weaned off from their tracheostomy after the first few months, and more than half of the individuals with Locked in Syndrome have their gastrostomy removed during their first year and begin feeding normally again (Maiese, 2017). Sometimes, antispasmodic drugs are administered to decrease any spasms the patient may suffer from.

Eye movement in this disease is important because it is their only form of communication. Devices have been invented to help aid these individuals in communication, such as infrared eye tracking devices that can control a computer or a wheelchair (Maiese, 2017). In some rare cases, a person with this disease may regain limited movement in a hand or foot which they can use to communicate with people, computers, and more (Maiese, 2017). Advancement in technology and care, people affected with this disease can become active members of society and less reliant on others for care.

In most cases, the person affected cannot say anything but knows what is going on around themselves. They are fully aware of their environment, but can only communicate through eye movement, so it may be hard to diagnose if the person whom they are with is not aware of the disease prior to the event occurring. Diagnosis for Locked in Syndrome can be found through an MRI of the brain, more specifically the area that has been damaged such as from a tumor.

An MRI also can show the damage to the pons in the brain, as well as a magnetic resonance angiography, which would be able to show a blood clot in arteries which are located in the brainstem (Davis, 2017). These tests can also rule out damage elsewhere in the brain, so these tests help aid in finding the true cause of what happened to the individual that made them become affected from Locked in Syndrome (Davis, 2017).

Although individuals suffer from limited motor ability, they often to still have a good quality of life, according to survivors. Although, they do have to rely on others for most things, unless they have regained any movement in their limbs.

There have been several cases where the person has experienced a full recovery, which is very rare in this disease, most patients do not even regain movement in one limb, although it is possible. Richard Marsh is a rare survivor of Locked in Syndrome and is able to recount every moment after his massive stroke (Hill, 2017). Just two days after suffering a stroke, he watched helplessly laying in a hospital bed as doctors questioned his wife whether they should switch off his life support or not (Hill, 2017). All Marsh wanted was for someone to see a sign, movement in his eyes, his hand move slightly, to let them know that he was still there and that he was going to keep fighting (Hill, 2017). But, he could not tell anyone that. The doctors believed he was in a permanent vegetative state and would not come out of it (Hill, 2017). The first sign of recovery was twitching in his fingers which eventually spread throughout his hand and his entire arm (Hill, 2017). For quite some time he was on life support and things were not looking great for Marsh, he says (Hill, 2017). “I had full cognitive and physical awareness, but an almost complete paralysis of nearly all the voluntary muscles in my body.” Marsh recalls (Hill, 2017). Marsh says through the whole process,



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