Do you know the truth about locked-in syndrome, the rare condition that leaves patients conscious but paralyzed, just like Dylan in Grey’s Anatomy?
If you’ve ever found yourself glued to medical series like Grey’s Anatomy, The Pitt, New Amsterdam, or Chicago Med, chances are you’ve learned a few medical terms that left you both fascinated and alarmed. I recently had one of those moments while watching Grey’s Anatomy.
In the two most recent episodes, a lively, smart young girl named Dylan underwent brain surgery, only to wake up unable to move or speak. She had developed what’s known as locked-in syndrome.
As I watched her lie still, only blinking to show she was alive, I needed to understand more. I needed to know what kind of condition leaves you conscious and aware but utterly unable to interact with the world.
If you’re just as curious, News Round The Clock in this article breaks down everything you need to know, from symptoms to causes, treatment, and what life is like for those who live with it.
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What is Locked-in Syndrome?
What Is Locked-In Syndrome?
Locked-in syndrome (LiS) or pseudocoma is a rare neurological disorder caused by damage to the brainstem, especially the pons, a critical part that links the brain to the spinal cord. When the pons is injured, it disrupts the brain’s communication with the body.
People with LiS are fully conscious. They can think, reason, hear, and even feel, but they can’t speak, move, or show emotion. In most cases, the only voluntary movement left is vertical eye movement and blinking.
Despite its name, the person isn’t in a coma. EEG scans often show normal brain activity, and patients can think, reason, and hear everything happening around them.
The term LiS was coined by Fred Plum and Jerome B. Posner in 1966.
Types of Locked-in Syndrome
Locked-in syndrome comes in three forms:
- Classic LiS: The most recognized type. Patients can’t move any muscles except for blinking or moving their eyes up and down.
- Incomplete LiS: Some patients retain limited movement or sensation in parts of their body.
- Total Immobility LiS: The most severe form. Even eye movement is lost, though cognitive function remains intact.
What Causes Locked-in Syndrome?
The leading cause of LiS is a stroke, either ischemic (from a blood clot) or hemorrhagic (from bleeding in the brain), that damages the brainstem.
Other causes include:
- Traumatic brain injury
- Brainstem tumors
- Infections
- ALS and Guillain-Barré syndrome
- Demyelinating diseases (loss of protective nerve coverings)
- Toxins or poisoning (like from a krait snake bite or paralytic shellfish poisoning)
- Rapid correction of low sodium levels (hyponatremia)
- Substance abuse or medication overdose
Symptoms of Locked-in Syndrome
LiS can often be mistaken for a coma. However, people with LiS can:
- Hear and comprehend speech
- Blink and sometimes move their eyes vertically
- Maintain normal sleep-wake cycles
- Think and reason as before
They cannot:
- Speak or make facial expressions
- Move limbs or voluntary muscles
- Chew, swallow, or breathe without assistance (in most cases)
How common is locked-in syndrome?
Because cases of locked-in syndrome (LiS) may go unrecognized or misdiagnosed, it’s difficult for researchers to determine the actual number of people who are affected by LiS each year. However, researchers agree that LiS is rare.
Who does locked-in syndrome affect?
Anyone can develop locked-in syndrome (LiS), though it more commonly affects people who are 30 to 50 years old.
How Is Locked-in Syndrome Diagnosed?
Diagnosing LiS can be challenging, especially since many patients initially appear unresponsive. Key diagnostic tools include:
- MRI or CT scans: To identify damage in the pons
- EEG: To assess brain activity and distinguish LiS from coma
- Evoked potentials: To test brain responses to stimuli
- Electromyography: To check muscle and nerve function
- Blood tests: To rule out metabolic causes
- Cerebrospinal fluid (CSF) tests: To detect infections or autoimmune disorders
Can Locked-in Syndrome Be Treated?
There’s no cure for LiS, but treatment focuses on managing the underlying cause, preventing complications, and supporting communication and physical therapy.
Supportive Care
- Breathing assistance (usually via tracheostomy)
- Feeding tubes (G-tubes) for nutrition
- Physical therapy to prevent muscle contractures
- Preventing infections like pneumonia or UTIs
- Bed sore prevention due to immobility
Communication Training
Speech and occupational therapists teach patients to use eye movements for basic communication, blinking once for “yes,” twice for “no,” or using eye-tracking devices and computers to form words and sentences.
Living With Locked-in Syndrome
Although full recovery is rare, many patients regain some mobility or partial communication abilities. Assistive technologies—like eye-tracking keyboards and voice generators—help individuals maintain relationships and even return to school or work.
Some people live for decades with LiS, reporting high levels of satisfaction and a meaningful life when proper care and social support are available.
Can Locked-in Syndrome Be Prevented?
While not all cases are preventable, reducing your risk of stroke, the most common cause, can help. Talk to your doctor about maintaining healthy blood pressure, cholesterol, and avoiding smoking or excessive alcohol.
Final Thoughts
Remember, Locked-in syndrome is as terrifying as it is misunderstood. But it’s also a powerful reminder of human resilience. People living with LiS are fully aware of their surroundings and, with the right tools and support, can live meaningful, connected lives.
With everything I’ve now learned, I can’t help but worry for little Dylan’s future. Her case has progressed to total locked-in syndrome, the most extreme form. As someone who has watched Grey’s Anatomy for years, I know the show is no stranger to dramatic miracles. And if there’s any justice in Shondaland, maybe Dylan will get hers too.
But if the writers decide to take a more somber route, well… that would truly be heartbreaking.
Here’s hoping the writers give her a fighting chance and let her story be one of hope and resilience, not just heartbreak.
