Locked-In Syndrome
The medical term for a conscious patient who cannot speak and cannot open their eyes is "locked-in syndrome" (LIS), specifically the "total" or "complete" variant when all eye movements including blinking are lost. 1
Clinical Definition and Variants
Locked-in syndrome is characterized by preserved consciousness with complete paralysis of voluntary muscles, rendering patients unable to move, speak, or communicate except through specific preserved movements. 2, 3
Classical locked-in syndrome presents with:
- Total immobility of all four limbs (quadriplegia) 2
- Inability to speak (anarthria) 2
- Bilateral horizontal gaze paralysis 2
- Preserved vertical eye movements and blinking - this is the key distinguishing feature 2, 4
- Fully intact consciousness and cognition 2, 3
Total (complete) locked-in syndrome - which matches your question - presents with:
- Complete immobility including all eye movements 4
- No ability to blink 5
- Preserved cortical function on EEG demonstrating consciousness 4
- This is the most severe form where patients cannot communicate at all 5
Incomplete locked-in syndrome occurs when patients retain some motor function beyond eye movements. 4
Anatomical Basis
The syndrome results from lesions affecting:
- Ventral pons (most common location) 2, 5
- Both cerebral peduncles interrupting pyramidal and corticobulbar tracts 4
- Supranuclear fibers for horizontal gaze 4
- Postnuclear oculomotor fibers (in total LIS) 4
The most common cause is basilar artery occlusion (86.4% of cases), with traumatic brain injury accounting for only 13.6%. 2, 5
Critical Diagnostic Considerations
The diagnosis is frequently delayed - averaging 2.5 months, with some cases taking 4-6 years to recognize. 3 This represents a catastrophic failure where fully conscious patients are mistaken for being in coma or vegetative state. 3
More than half the time, family members - not physicians - first recognize that the patient is conscious. 3 This underscores the importance of:
- Careful observation for any voluntary eye movements 2
- Testing vertical gaze and blinking systematically 2, 4
- Using the Coma Recovery Scale-Revised (CRS-R) to distinguish from vegetative state 6
- Recognizing that patients in the acute phase may have fluctuating vigilance making assessment difficult 3
Relationship to Cerebral Performance Categories
The guidelines classify locked-in syndrome under Cerebral Performance Category 3 (Severe cerebral disability), specifically describing patients "paralyzed and can communicate only with their eyes." 1 However, this classification applies only to classical LIS where eye communication remains possible, not total LIS.
Prognosis and Long-Term Outcomes
Once medically stable, life expectancy extends to several decades. 3 Recovery patterns show:
- 49% eventually regain some verbal language 7
- 73% recover some functional movements over years 7
- Motor recovery from total paralysis is very limited 5
- Quality of life is often better than clinicians assume - chronic LIS patients typically report meaningful quality of life and rarely request euthanasia 3
Common Pitfalls to Avoid
Do not confuse locked-in syndrome with:
- Vegetative state/coma - these patients lack consciousness entirely, whereas LIS patients are fully aware 1, 3
- Cataplexy - patients maintain full recollection and consciousness is not lost 8
- Psychogenic pseudosyncope - no actual neurological damage occurs 8
Critical error: Assuming poor quality of life justifies withdrawal of care. Only the medically stabilized, informed LIS patient is competent to make decisions about life-sustaining treatment. 3