Linda Phung, MD
Resident, PGY-3
Rutgers New Jersey Medical School
Bloomfield, New Jersey, United States
Rachel R. Murray, MD
Resident, PGY-4
Rutgers New Jersey Medical School
Newark, New Jersey, United States
Jennifer Russo, MD
Associate Brain Injury Medicine Fellowship Director
Rutgers/Kessler Institute of Rehabilitation
Saddle Brook, New Jersey, United States
A 34-year-old man underwent surgical resection of a brainstem pilocytic astrocytoma with a complicated post-operative course including paroxysmal autonomic instability with dystonia and superior mesenteric artery syndrome. During his hospitalization, his family witnessed subtle signs of command following but he was persistently described as being in a state of unresponsive wakefulness. More than two years post-surgery, a physiatrist noted evidence of consciousness masked by severe motor and oromandibular dystonia with contractures. He was recommended admission to an inpatient covert consciousness program.
During rehabilitation, he increasingly followed commands but was significantly limited by severe contractures in all extremities. To establish a communication system, movements he could reliably reproduce were identified. He trialed augmentative and alternative communication software using a Neuronode device. He became somewhat consistent with his head, left foot, and left middle finger movements. He was discharged with the device and continued outpatient speech therapy services for further training.
Discussions: Current gold standard bedside evaluations for consciousness, such as the Coma Recovery Scale Revised, often misdiagnose individuals with covert consciousness as having a disorder of consciousness. New methods are being developed to more fully capture this population. Meanwhile, comprehensive evaluation by an interdisciplinary team is crucial to identify these individuals and guide appropriate discharge planning. Early detection can connect patients with knowledgeable providers, therapists, and resources to help prevent development of severely limiting muscle contractures and optimize functional communication.
Conclusions: Covert consciousness is often missed with current standard bedside assessments. Delays in diagnosis of covert consciousness profoundly impacts providers’ ability to provide care that optimizes the function and quality of life for these individuals.