What Is the Brainstem?
The brainstem sits at the base of the brain, connecting it to the spinal cord. It plays a critical role in carrying signals between the brain and the rest of the body. Within the brainstem, the pons acts as a major communication pathway—helping control movement, facial expression, and the ability to speak.
When the pons suffers damage, those communication pathways can be disrupted. As a result, a person may lose nearly all voluntary muscle control, including the ability to move, speak, or swallow, while still remaining fully conscious and aware of their surroundings.
Why the Pons Is So Important
The pons helps transmit signals that allow the body to:
- Move the arms and legs
- Control facial muscles
- Speak and swallow
- Coordinate basic motor functions
When these signals can no longer pass between the brain and the body, the result can be the profound paralysis seen in locked-in syndrome.
The Most Common Cause: Stroke
In most cases, locked-in syndrome occurs after a stroke affecting the brainstem, particularly one that interrupts blood flow to the pons. Because stroke treatment is highly time-sensitive, delays in recognizing or treating symptoms can affect the extent of injury.
At the same time, not every stroke can be prevented or reversed, even with appropriate and timely medical care.
Can Other Areas of the Brain Cause Locked-In Syndrome?
While the pons is the most commonly affected area, locked-in syndrome can, in rare cases, result from damage to nearby parts of the brainstem or related pathways. What these situations share is disruption of the signals that control voluntary movement, while leaving awareness intact.
Can Locked-In Syndrome Result from Other Types of Brain Injury?
While stroke is the most common cause, other events can sometimes lead to locked-in syndrome when the brainstem or its communication pathways are affected.
These may include:
- Traumatic brain injury (TBI): Severe head injuries can damage or place pressure on the brainstem, disrupting movement while awareness remains intact.
- Drug overdoses: Certain substances can interfere with brainstem function in rare cases, leading to profound paralysis.
- Heroin-induced leukoencephalopathy: A rare condition linked to heroin use that damages white matter and can affect movement pathways.
- Neurotoxic venoms: Some toxins can disrupt nerve signaling between the brain and muscles, resulting in paralysis.
- Other medication or substance exposure: Certain drugs or substances, including cocaine, may affect the brainstem or its pathways in uncommon cases.
- Tumors: A tumor on the brainstem can lead to LIS.
- Infections: An infection in certain parts of the brain can cause LIS.
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Signs and Symptoms of Locked-In Syndrome Caused by Brainstem Damage
When a person suffers brainstem damage and develops locked-in syndrome, there are many signs and symptoms they may experience. Family members are often the first to recognize awareness and cognition in patients with locked-in syndrome. The most common symptoms include:
- Quadriplegia and global paralysis
- Ability to blink eyes and make vertical eye movements
- Full awareness and cognition
- No response to painful stimuli
- May lack autonomic functions such as breathing and swallowing
- Retaining the ability to see and hear
If you suspect your loved one is in a pseudocoma state and is aware of their environment following a stroke or brain injury, notify their doctor as soon as possible. Their doctor can evaluate their brain activity and determine their level of cognition.
Getting an updated diagnosis will allow their medical care team to offer communication options and work toward the best possible quality of life. Knowing you are aware of their condition will also bring relief to your loved one.
Treatment and Care of Those with Locked-In Syndrome
There is no standard treatment or cure for locked-in syndrome. Damage to the brainstem typically does not heal. In classic locked-in syndrome, the patient suffers global paralysis except for being able to blink the eyes and make vertical eye movements.
In patients who retain or recover horizontal eye movements, there is reason to believe they have suffered an incomplete injury and may recover mobility in additional parts of their body. They may recover movement or a small range of motion in a single finger or foot. An incomplete injury may be possible even in patients who do not recover horizontal eye movements in the first days or weeks following the brainstem injury.
Significant recovery is extremely rare, although there have been news reports of some people who have regained mobility, some even learning to walk again.
Improving Quality of Life for Those with Locked-In Syndrome
Quality of life is the top concern for the family of those with locked-in syndrome. Most medical care focuses on preventing opportunistic infections such as pneumonia and pressure sores. Also, doctors and therapists can prescribe special tools and devices to help with communication and mobility.
Specially designed power wheelchairs, lifts, stair lifts, and hospital beds are must-haves for families who want to care for their loved one at home. Communication devices also make it possible for those with locked-in syndrome to interact with their loved ones and the outside world. Eye gaze devices and brain-computer interfaces are the two go-to communication devices for those with classic locked-in syndrome.
Unfortunately, the care a person with locked-in syndrome requires is costly and long-term. Many people need round-the-clock care from loved ones or need to be placed in a care facility, which costs thousands of dollars each month. Devices needed to communicate with loved ones can cost anywhere from a few hundred dollars to tens of thousands of dollars.
Pursuing Damages for Brainstem Injury and Locked-In Syndrome
In some cases, you may be able to pursue damages on your loved one’s behalf following a brainstem injury and locked-in diagnosis. This is most common if your loved one’s stroke was not diagnosed or treated in time. Our team offers no-cost, no-obligation medical reviews where we can determine whether your loved one’s LIS was a result of medical negligence.
We can work with an independent medical professional to determine whether your loved one’s care met the industry’s standard of care (i.e., what a person with similar training would have done in the same situation). Examples of care that fell short of the standard of care could include:
- Misreading test results
- Ignoring symptoms
- Misdiagnosing symptoms, which is common with brainstem strokes
- Failing to order necessary tests
- Taking too long to transfer a patient to a capable stroke center
What you choose to do with that information is up to you. If you decide legal action is the best option in your case, we can handle every aspect of the process for you.
Get Answers About Your Loved One’s Locked-In Syndrome
We know you likely have more questions than answers right now. We want to help you get the answers you need. We can listen to your story and review your case, so you can determine how your loved one’s locked-in syndrome occurred.
Call whenever you are ready. Newsome Law is here to listen and support you through every stage.
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