Emergency responders found the driver’s-side door of Dylan’s
SUV crunched into a telephone pole. Dylan was unconscious. His breathing
sounded like the gurgling of a straw in a near-empty cup. He had traveled
barely 200 yards before striking the pole, possibly after hitting black ice. He
wasn’t wearing a seat belt.
It took responders eight minutes to pull him out. There was
so much blood and lacerated flesh that medics could not insert a breathing tube
during the 29-minute ambulance ride into Boston. At Massachusetts General
Hospital, Dylan had a CT scan and was rushed into surgery, where neurosurgeons
removed the left side of his skull and part of the right to stop multiple brain
hemorrhages. By the time he was transferred to the neuro intensive-care unit,
he was a swollen-faced sphinx—his eyes closed, his head wrapped in bandages,
pincushioned with needles, and on a ventilator. His face had been shattered;
his left leg was broken. And he was in a deep coma.
To gauge Dylan’s chances of recovery, doctors would rely on
standard timelines, and their prognosis would inform treatment. But as
neurologists acknowledge, early prognosis is very difficult, diagnosis is often
flawed, and the timelines that guide recovery are defied by patients who don’t
obey the statistics.
Day 8
On the same day as Dylan’s first MRI, neuropsychologist
Joseph Giacino administered a test known as the Coma Recovery Scale. He pried
Dylan’s eyes open to see if there was any sign of visual tracking. There
wasn’t. Dylan scored a 1 on the scale, out of 23.
The director of rehabilitation neuropsychology at Spaulding
Rehabilitation Hospital and an authority on disorders of consciousness, Giacino
had been called in to consult on Dylan’s case. He is among a growing number of
experts warning of what he calls a rush to judgment in predicting an outcome
for brain-trauma patients. In a study of Canadian trauma centers, researchers
reported that one third of the patients who went into the ER with severe
traumatic brain injuries died. Half died in the first 72 hours. Nearly two
thirds of those early deaths had life support withdrawn, suggesting that the
cases were deemed hopeless in the first few days. According to Giacino, it can
take much longer than that for a person’s chances of recovery to become clear.
Recent literature suggests that if a patient displays any form of conscious
awareness within 60 days, his or her chances are considerably better. As a
realist, Giacino knows hardly anyone—families, doctors, insurers—can wait that
long.
When doctors pored over images from Dylan’s MRI, they were
shocked by the damage. In a car accident, the impact sends the brain banging
around inside the skull. “It shears or literally tears the axons, the wires
that send signals from one part of the brain to the other,” said neurologist
Brian Edlow, a member of Dylan’s treatment team. The MRI showed frayed wires
everywhere. In his notes, Giacino wrote that “the probability of recovery of
functional, vocational, and social independence is low.”…
Dylan’s family members sat in a conference room with
doctors, who showed them the scans. Steve recalled, “They kept saying—it was
like 90 percent of what we were looking at—‘This [area] will never recover,
this will never recover.’”
“They told us they didn’t think he would ever be able to
live at home, that he would probably be institutionalized and have moments of
clarity where he would recognize us,” Tracy recalled as tears welled up. “But
they didn’t think he would even have that.”
About the only factor in Dylan’s favor was his youth. After
the doctors left, Dylan’s father ran out and buttonholed one of them. “Lookit,”
he said, “we don’t need time to think. You need to do whatever you can do …
What would you do if it were your kid?” He got no disagreement from the doctor,
who replied, “We want to do everything.”…
Day 27
Dylan had been storming for several days. Tracy and her
mother sat at his side, while Tracy wiped sweat off his forehead. Then something
remarkable happened: Tracy went to wipe his head, and Dylan raised his hand.
When he did it a second time, she put the cloth in his hand and said, “Dylan,
wipe it yourself.” He started to wipe his mouth and nose.
Day 44
Dylan’s doctors performed a second MRI. Remarkably, the scan
suggested that some of his damaged wiring had begun to mend. “To our
knowledge,” the doctors noted later, “this type of reversal has not been
previously described with serial neuroimaging or in a case with such a
widespread extent of axonal injury.” The repair process, referred to as
plasticity, is much more robust in a young brain than in an old brain,
neurologist Edlow explained. One revelation of recent research is evidence that
severe injury can activate mechanisms of neural development that normally
deploy during childhood.
Day 45
Dylan had been tugging at the plastic tubing that connected
to his trachea. The family gave him a short rubber tube to distract him. At one
point, Steve reached for the other end of the tube and blew into it. The noise
sounded like a fart. Dylan laughed. To Tracy, this was a glimmer not only of
consciousness but of personality: “We were like, Oh my God! Like, he knew what
a fart is, right? He’s still in there!”
Day 60
At the end of February, Dylan was transferred to Spaulding
Rehabilitation Hospital. Still considered minimally conscious, he could sit up
in bed with assistance; he could nonverbally answer biographical questions with
about 75 percent accuracy; and he could follow one-step commands about 40
percent of the time…
Day 142
The physical therapy nurses stood Dylan in front of a mirror
and wrote “Dylan loves the Yankees” and “Bruins stink” with a marker on the
glass. Dylan picked up an eraser and wiped away the insults—“very quick,” his
parents reported, “even for Dylan.”
Day 208
Nurses, patients, doctors, and well-wishers gathered at the
reception desk for a send-off party. In a video, Dylan sits in a wheelchair,
waving and smiling. His smile has the megawatt quality it had before the
accident, but the wave is on a two-second delay, almost slow motion. That day
is the first thing he remembers since the day of the accident. “Coming out of
it, it was like I was asleep, and I was just back alive,” he said later. “The
last day at Spaulding, that’s when I felt alive.”
Before he left Spaulding, he hit another milestone: He said
his first word since the accident…
Day 746
Dylan went rock climbing, working his way up a climbing
wall. The Rizzos sent the video to Giacino, who includes the clip when he gives
talks about recovery in patients who reached a minimally conscious state within
60 days of their injury. It is a vivid embodiment of his argument for patience.
“What this tells us,” Giacino said, “is that the story doesn’t end at 12
months.” Dylan is among a growing number of patients who defy the odds. “We
don’t know how many exceptions to the rule there are,” Giacino said. “So I
don’t believe in the rule anymore.”…
Day 1,541
“He’s still the same person,” Tracy said. “Just neater. He
was a slob before the accident.” Dylan smiled.
The most conspicuous reminder of his injury was a slight
indentation in his left temple and two shiny lanes of hairless skin that run
back from the crown of his forehead. Now 23, he is functionally independent. He
volunteers as an assistant track coach at his old high school, helps his father
on construction projects, and hopes to attend community college. He continues
to need speech and cognitive therapy. “Dylan still has memory issues,
organization issues, and time-management issues,” Tracy said. He does not
remember a single thing about the six months prior to the accident or the seven
months after.
Not only is he functional, but he’s functional in a
red-blooded 20-something way. When we went out for lunch, Dylan ordered a
sampler of microbrews (“His neurologist says he can have one or two beers,”
Tracy said). Back at home, I asked to see his room. Dylan effortlessly climbed
the stairs and led me there. Inside was a flat-screen TV, and a lacrosse stick
was propped in one corner. The bed was made, and Steve opened the closet to
reveal T-shirts, each hung and color-sorted. “There was nothing in here before
the accident. Everything was on the floor,” he said, then laughed.
“Reprogramming the brain works.”
http://www.rd.com/true-stories/inspiring/brain-injury-recovery/
Courtesy of my daughter
Bodien YG, Carlowicz CA, Chatelle C, Giacino JT. Sensitivity and Specificity of the Coma Recovery Scale--Revised Total Score in Detection of Conscious Awareness. Arch Phys Med Rehabil. 2016 Mar;97(3):490-492.
ReplyDeleteAbstract
OBJECTIVE:
To describe the sensitivity and specificity of Coma Recovery Scale-Revised (CRS-R) total scores in detecting conscious awareness.
DESIGN:
Data were retrospectively extracted from the medical records of patients enrolled in a specialized disorders of consciousness (DOC) program. Sensitivity and specificity analyses were completed using CRS-R-derived diagnoses of minimally conscious state (MCS) or emerged from minimally conscious state (EMCS) as the reference standard for conscious awareness and the total CRS-R score as the test criterion. A receiver operating characteristic curve was constructed to demonstrate the optimal CRS-R total cutoff score for maximizing sensitivity and specificity.
SETTING:
Specialized DOC program.
PARTICIPANTS:
Patients enrolled in the DOC program (N=252, 157 men; mean age, 49y; mean time from injury, 48d; traumatic etiology, n=127; nontraumatic etiology, n=125; diagnosis of coma or vegetative state, n=70; diagnosis of MCS or EMCS, n=182).
INTERVENTIONS:
Not applicable.
MAIN OUTCOME MEASURES:
Sensitivity and specificity of CRS-R total scores in detecting conscious awareness.
RESULTS:
A CRS-R total score of 10 or higher yielded a sensitivity of .78 for correct identification of patients in MCS or EMCS, and a specificity of 1.00 for correct identification of patients who did not meet criteria for either of these diagnoses (ie, were diagnosed with vegetative state or coma). The area under the curve in the receiver operating characteristic curve analysis is .98.
CONCLUSIONS:
A total CRS-R score of 10 or higher provides strong evidence of conscious awareness but resulted in a false-negative diagnostic error in 22% of patients who demonstrated conscious awareness based on CRS-R diagnostic criteria. A cutoff score of 8 provides the best balance between sensitivity and specificity, accurately classifying 93% of cases. The optimal total score cutoff will vary depending on the user's objective.
Hauger SL, Schnakers C, Andersson S, Becker F, Moberget T, Giacino JT, Schanke AK, Løvstad M. Neurophysiological Indicators of Residual Cognitive Capacity in the Minimally Conscious State. Behav Neurol. 2015;2015:145913.
ReplyDeleteAbstract
BACKGROUND:
The diagnostic usefulness of electrophysiological methods in assessing disorders of consciousness (DoC) remains to be established on an individual patient level, and there is need to determine what constitutes robust experimental paradigm to elicit electrophysiological indices of covert cognitive capacity.
OBJECTIVES:
Two tasks encompassing active and passive conditions were explored in an event-related potentials (ERP) study. The task robustness was studied in healthy controls, and their utility to detect covert signs of command-following on an individual patient level was investigated in patients in a minimally conscious state (MCS).
METHODS:
Twenty healthy controls and 20 MCS patients participated. The active tasks included (1) listening for a change of pitch in the subject's own name (SON) and (2) counting SON, both contrasted to passive conditions. Midline ERPs are reported.
RESULTS:
A larger P3 response was detected in the counting task compared to active listening to pitch change in the healthy controls. On an individual level, the counting task revealed a higher rate of responders among both healthy subjects and MCS patients.
CONCLUSION:
ERP paradigms involving actively counting SON represent a robust paradigm in probing for volitional cognition in minimally conscious patients and add important diagnostic information in some patients.
Wu X, Zou Q, Hu J, Tang W, Mao Y, Gao L, Zhu J, Jin Y, Wu X, Lu L, Zhang Y, Zhang Y, Dai Z, Gao JH, Weng X, Zhou L, Northoff G, Giacino JT, He Y, Yang Y. Intrinsic Functional Connectivity Patterns Predict Consciousness Level and Recovery Outcome in Acquired Brain Injury. J Neurosci. 2015 Sep 16;35(37):12932-46.
ReplyDeleteAbstract
For accurate diagnosis and prognostic prediction of acquired brain injury (ABI), it is crucial to understand the neurobiological mechanisms underlying loss of consciousness. However, there is no consensus on which regions and networks act as biomarkers for consciousness level and recovery outcome in ABI. Using resting-state fMRI, we assessed intrinsic functional connectivity strength (FCS) of whole-brain networks in a large sample of 99 ABI patients with varying degrees of consciousness loss (including fully preserved consciousness state, minimally conscious state, unresponsive wakefulness syndrome/vegetative state, and coma) and 34 healthy control subjects. Consciousness level was evaluated using the Glasgow Coma Scale and Coma Recovery Scale-Revised on the day of fMRI scanning; recovery outcome was assessed using the Glasgow Outcome Scale 3 months after the fMRI scanning. One-way ANOVA of FCS, Spearman correlation analyses between FCS and the consciousness level and recovery outcome, and FCS-based multivariate pattern analysis were performed. We found decreased FCS with loss of consciousness primarily distributed in the posterior cingulate cortex/precuneus (PCC/PCU), medial prefrontal cortex, and lateral parietal cortex. The FCS values of these regions were significantly correlated with consciousness level and recovery outcome. Multivariate support vector machine discrimination analysis revealed that the FCS patterns predicted whether patients with unresponsive wakefulness syndrome/vegetative state and coma would regain consciousness with an accuracy of 81.25%, and the most discriminative region was the PCC/PCU. These findings suggest that intrinsic functional connectivity patterns of the human posteromedial cortex could serve as a potential indicator for consciousness level and recovery outcome in individuals with ABI.
SIGNIFICANCE STATEMENT:
Varying degrees of consciousness loss and recovery are commonly observed in acquired brain injury patients, yet the underlying neurobiological mechanisms remain elusive. Using a large sample of patients with varying degrees of consciousness loss, we demonstrate that intrinsic functional connectivity strength in many brain regions, especially in the posterior cingulate cortex and precuneus, significantly correlated with consciousness level and recovery outcome. We further demonstrate that the functional connectivity pattern of these regions can predict patients with unresponsive wakefulness syndrome/vegetative state and coma would regain consciousness with an accuracy of 81.25%. Our study thus provides potentially important biomarkers of acquired brain injury in clinical diagnosis, prediction of recovery outcome, and decision making for treatment strategies for patients with severe loss of consciousness.
Smart CM, Giacino JT. Exploring caregivers' knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness. NeuroRehabilitation. 2015;37(1):117-30.
ReplyDeleteAbstract
BACKGROUND:
A paucity of information is available regarding how caregivers of persons with post-traumatic disorders of consciousness (DOC) approach medical decision-making. Yet for evidence-based standards of care to be established, the onus is on caregivers' willingness to enroll their family members in clinical trials of novel tests and treatments (NTT).
OBJECTIVE:
To gather information regarding the beliefs and opinions of caregivers regarding NTT for DOC.
METHODS:
Exploratory qualitative data via focus groups from N = 17 caregivers of persons in post-traumatic DOC at both the acute (N = 7) and subacute (N = 10) phases of injury recovery. Supplemental survey data about knowledge of DOC.
RESULTS:
While attitudes toward NTT were generally favorable, two main themes emerged that influenced willingness to pursue NTT: patient and caregiver-specific factors, and the acquisition/use of information to guide decision-making. While survey data suggested a lack of knowledge about NTT, qualitative data revealed that this was better explained by different standards for knowledge, i.e., anecdotal versus empirical information.
CONCLUSIONS:
Current findings could support discussion between healthcare providers and caregivers regarding medical decision-making as well as suggestions for how to increase the likelihood of caregivers being willing to enroll their family members in clinical trials of NTT.
Philippus A, Mellick D, O'Neil-Pirozzi T, Bergquist T, Bodien YG, Sander AM, Dreer LE, Giacino J, Novack T. Impact of religious attendance on psychosocial outcomes for individuals with traumatic brain injury: A NIDILRR funded TBI Model Systems study. Brain Inj. 2016 Sep 13:1-7.
ReplyDeleteAbstract
OBJECTIVES:
To (1) identify demographic characteristics of individuals with traumatic brain injury (TBI) who attend religious services, (2) understand the relationship between attending religious services and psychosocial outcomes and (3) examine the independent contribution of religious service attendance to psychosocial outcomes while controlling for demographic characteristics, functional status and geographic location at 1, 5 and 10-years post injury.
DESIGN:
Retrospective, cross-sectional cohort study using secondary data analysis of the TBI Model Systems (TBIMS) National Database (NDB).
PARTICIPANTS:
TBIMS NDB participants who completed 1, 5 or 10-year follow-up interview with data on religious attendance. A total of 5573 interviews were analysed.
OUTCOME MEASURES:
Satisfaction with Life scale (SWLS), Generalized Anxiety Disorder (GAD-7), Patient Health Questionnaire (PHQ-9) and Participation Assessment with Recombined Tools-Objective Social sub-scale.
RESULTS:
Approximately half of the sample was attending religious services at each time point. Attendance was a significant protective factor for each outcome across all three-time periods. After controlling for demographic characteristics, functional status and geographic makeup, religious attendance contributed a small but significant amount of unique variance in all models except for GAD-7 at years 1 and 10.
DISCUSSION:
This study highlights the benefits of religious attendance on psychosocial outcomes post-TBI. Implications for rehabilitation are discussed.
Chatelle C, Bodien YG, Carlowicz C, Wannez S, Charland-Verville V, Gosseries O, Laureys S, Seel RT, Giacino JT. Detection and Interpretation of Impossible and Improbable Coma Recovery Scale-Revised Scores. Arch Phys Med Rehabil. 2016 Aug;97(8):1295-1300
ReplyDeleteAbstract
OBJECTIVE:
To determine the frequency with which specific Coma Recovery Scale-Revised (CRS-R) subscale scores co-occur as a means of providing clinicians and researchers with an empirical method of assessing CRS-R data quality.
DESIGN:
We retrospectively analyzed CRS-R subscale scores in hospital inpatients diagnosed with disorders of consciousness (DOCs) to identify impossible and improbable subscore combinations as a means of detecting inaccurate and unusual scores. Impossible subscore combinations were based on violations of CRS-R scoring guidelines. To determine improbable subscore combinations, we relied on the Mahalanobis distance, which detects outliers within a distribution of scores. Subscore pairs that were not observed at all in the database (ie, frequency of occurrence=0%) were also considered improbable.
SETTING:
Specialized DOC program and university hospital.
PARTICIPANTS:
Patients diagnosed with DOCs (N=1190; coma: n=76, vegetative state: n=464, minimally conscious state: n=586, emerged from minimally conscious state: n=64; 794 men; mean age, 43±20y; traumatic etiology: n=747; time postinjury, 162±568d).
INTERVENTIONS:
Not applicable.
MAIN OUTCOME MEASURE:
Impossible and improbable CRS-R subscore combinations.
RESULTS:
Of the 1190 CRS-R profiles analyzed, 4.7% were excluded because they met scoring criteria for impossible co-occurrence. Among the 1137 remaining profiles, 12.2% (41/336) of possible subscore combinations were classified as improbable.
CONCLUSIONS:
Clinicians and researchers should take steps to ensure the accuracy of CRS-R scores. To minimize the risk of diagnostic error and erroneous research findings, we have identified 9 impossible and 36 improbable CRS-R subscore combinations. The presence of any one of these subscore combinations should trigger additional data quality review.