What Is Classical Locked-In Syndrome?
With classical locked-in syndrome (LIS), a person has lost all voluntary movement, typically aside from vertical eye movements and blinking.
A person with LIS is still entirely conscious and aware of the world around them.
What Causes Classical Locked-In Syndrome?
Locked-in syndrome most commonly results from a stroke that affects the brainstem, the part of the brain that controls voluntary movement throughout the body. When blood flow to this area is interrupted, it can damage the pathways that allow the brain to communicate with the muscles, while leaving awareness and cognition intact. Other causes include:
- Traumatic brain injury
- Central pontine myelinolysis (CPM), which can result from sodium levels being corrected too quickly
- Infections
- Poisoning
- Drug overdoses
What Care Is Required With Classical Locked-In Syndrome?
Most people with LIS will need care for the rest of their lives. They will likely need:
- Round-the-clock care for feeding, hygiene, and mobility (People with LIS typically cannot swallow, so they need to be fed through a percutaneous endoscopic gastrostomy tube placed in the abdomen. People with LIS also need to be moved and cleaned regularly to prevent bedsores.)
- Assistance with breathing, which may include a ventilator or tracheostomy
- Regular physical and occupational therapy to maintain range of motion and prevent complications like contractures
- Ongoing monitoring for skin integrity, infection, and other risks associated with limited movement
- Support to build and maintain a communication system with caregivers and loved ones
Caring for a loved one with locked-in syndrome asks a great deal of a family, emotionally, physically, and financially.
| Type of Care | Estimated Cost in the United States |
| Private duty nurse (hourly rate) | $4,680/year (based on one hour per week) |
| Assisted living community | $74,400/year |
| Long-term care facility, e.g., nursing home (semi-private room) | $114,975/year |
| Long-term care facility, e.g., nursing home (private room) | $129,575/year |
Source: Genworth
Is It Possible to Recover from Classical Locked-In Syndrome?
Recovery is possible; however, what recovery looks like differs for each individual. Most people with LIS don’t recover the ability to communicate and walk, but some are able to regain certain movements, such as the ability to move a finger.
It is important to note that any level of recovery is an achievement. For example, a finger twitch can give your loved one an easier way to communicate and engage with family.
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Communicating With Locked-In Syndrome
It is possible to communicate with classical locked-in syndrome. However, it’s important to remember that it will look different than what you are used to.
Blink-Based Communication
Blinking is often the first and most reliable way a person with LIS can communicate. Caregivers can establish a simple system, such as one blink for “no” and two blinks for “yes,” to help their loved one make basic decisions and express needs. Over time, many families build on this foundation, pairing blinks with letterboards or other tools to allow for more detailed conversation.
Letterboards
People with LIS often communicate using letterboards. This involves family members or caregivers pointing to letters on a board and waiting for their loved one to blink when they have made it to the correct letter. As communication becomes more advanced, you and your loved one can create a system for faster and easier communication. For example, you may want to put certain common words on the board, such as “thirsty,” “pain,” “itchy,” “hot,” or “cold,” to quickly meet your loved one’s needs.
Eye-Gaze Devices
Eye-gaze devices use sensors to track eye movement, allowing a person with LIS to select letters, words, or phrases on a screen simply by looking at them. These devices can offer more independence and speed than blink-based methods alone, and many can be customized as a person’s needs and abilities change. For families exploring communication options, an eye-gaze device can open the door to more natural, less physically demanding conversation.
If your loved one recovers enough to move a finger, they may be able to graduate to using other technologies like finger switch devices.
Recovering Compensation for Classical Locked-In Syndrome
When locked-in syndrome results from a stroke or other medical event that may have been prevented, missed, or mismanaged, families are sometimes left facing enormous care costs on top of an already overwhelming diagnosis. Compensation cannot undo what happened, but it can help ease that burden and give your family room to focus on your loved one’s care rather than the cost of it.
Depending on the circumstances, compensation in these cases may account for:
- Past and future medical expenses, including hospitalization, therapy, ongoing nursing care, and specialized equipment such as eye-gaze devices or feeding supplies
- Long-term care costs, covering the round-the-clock support many people with LIS require for the rest of their lives
- Lost income, both for the person with LIS and, in some cases, for a family member who has reduced work hours to provide care
- Pain and suffering, which accounts for the physical and emotional toll of the condition itself
- Emotional distress or mental anguish for the fear your loved one dealt with
- Loss of companionship or support, recognizing the profound change in a family’s day-to-day life and relationships
- Lost quality of life to compensate for how the diagnosis has changed your loved one’s quality of life
Every family’s circumstances are different, and the compensation available will depend on the specifics of what happened and how it affected your loved one and household.
How We Build a Case for the Compensation You Need
Recovering compensation generally involves showing that a medical provider or other party did not uphold the standard of care a patient was owed, and that this failure played a direct role in causing or worsening the locked-in syndrome. This might involve, for example, a delay in recognizing stroke symptoms, an error in treatment, or a failure to monitor a patient appropriately during a procedure or recovery period.
Because these cases depend heavily on medical records, expert review, and the specific timeline of a patient’s care, they call for a careful, evidence-based approach rather than assumptions about what went wrong. We can work with an independent medical provider to evaluate what happened and determine whether the standard of care was met, and guide your family through the process of seeking accountability and support.
We Are Here to Help After a Classical Locked-In Syndrome Diagnosis
If you’re trying to understand what happened to your loved one and what options your family may have, you don’t have to sort through it alone. A locked-in syndrome lawyer at Newsome Law is ready to support you and your family throughout this process. We want to learn more about you and your family and how we can help you.
Call today for a free consultation.
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