The Missouri Greenbook Living With Brain Injury
The Missouri GreenbookLiving with Brain Injuryesilimaf,sror surviversvigeraand cfoediugA1-800-451-0669
Medical informationYou might find it helpful to keep important health-related information readily available.This book belongs to:Date of injury:Diagnosis:Health care providers:Name of hospital: Phone:Name of hospital: Phone:Name of doctor: Phone:Name of doctor: Phone:Specialty doctor: Phone:Specialty doctor: Phone:Specialty doctor: Phone:Health plan (insurance):Name: Phone:ID number:Name: Phone:ID number:Pharmacy:Name: Phone:Emergency contact: Phone:
Major medical events:Test or treatment performedOther information:Location of treatmentDate
The Missouri GreenbookLiving with Brain Injury- A guide for survivors, families and caregivers -“Don’t give up. As a survivor for over 10 years,I experience continual progress every day.”- Andrea Buening, Seneca, Mo.TBI survivor
AcknowledgementsThe Missouri Brain Injury Advisory Council in conjunction with its lead agency, the MissouriDepartment of Health and Senior Services, and the Brain Injury Association of Missouri havepartnered to create The Missouri Greenbook: Living with Brain Injury. The publication of thisbooklet was supported in part by H25MC00264 from the Maternal and Child Health Bureau(Title V, Social Security Act), Health Resources and Services Administration, Department ofHealth and Human Services.Special recognition goes to those individuals representing the Missouri Brain InjuryAdvisory Council and the Brain Injury Association of Missouri who are contributingauthors to this booklet:M. Ellen Nichols, M.D., F.A.C.S.Missouri Brain Injury Advisory CouncilAndrea BueningMissouri Brain Injury Advisory CouncilTerrie Price, Ph.D., ABPPRehabilitation Institute of Kansas CityBrain Injury Association of MissouriThomas Martin, Psy. D., ABPPMissouri Rehabilitation CenterBrain Injury Association of MissouriLori BrennekeDepartment of Health and Senior ServicesDeloris HubnerDepartment of Health and Senior ServicesThe authors extend their appreciation to the following individuals from the Missouri RehabilitationCenter for their medical review of the Greenbook: Najdat Atallah, M.D., Physiatrist; Kusai Umran, M.D.,Physiatrist; and John M. Bennett, M.S., CCC-SLP.The authors would like to acknowledge the following publications from which information was usedin the creation of this guide: “What Everyone Should Know About Brain Injury.” Missouri Head Injury Guide forPeople Interested in Traumatic Brain Injury. 2001. Missouri Head Injury Advisory Counciland Missouri Department of Health. “Traumatic Brain Injury-Related Hospital Discharges, Results from a 14 State SurveillanceSystem, 1997.” Centers for Disease Control and Prevention. “Human brain and psychological processes.” A.R. Luria. 1966. New York: Harper & Row. The Shaken Baby Alliance. www.shakenbaby.com. Online August 22, 2002. “What Psychotherapists Should Know about Disability.” R. Olkin. 1999. New York: GuilfordPress. “Acute Brain Injury: A Guide for Family and Friends.” Illustrations by James Abel and LorettaPopp. 2004. University of Iowa Center for Disabilities and Development.Special thanks to the Missourians who have experienced a traumatic brain injury and their family members who contributed their insights to this publication. Their words of wisdom located throughout these pages offer invaluable adviceand hope to the thousands of traumatic brain injury survivors and their families across Missouri.Revised 02/12
ForewordYou have probably received this publicationbecause you or someone you care about hassuffered a traumatic brain injury (TBI). Youare not alone.Approximately 5.3 million Americanscurrently live with long-term effects of a TBI.More than 14,000 Missourians are admittedto an emergency department or hospitalizedeach year due to a TBI.Recovering from a TBI is a lifelong journey.Part of the recovery involves learningas much as possible about TBI. Havinginformation about what has happenedand other challenges you may encounteris essential to coping and managing.The goal of this book is to provideanyone touched by brain injury withinformation and resources to assistwith the journey of recovery. You maypersonalize the book to you and yourneeds. Use it to record vital informationabout your journey (important tests,procedures, accomplishments). Use itto record questions you may want to askthe next time you visit with a health careprofessional.It is normal that you may experience manyemotions that come and go at differenttimes throughout your journey. Hopefully,you will find the comments within this bookfrom survivors and family members to becomforting and reassuring.One of the most significant factorscontributing to a survivor’s recovery is thelevel of involvement and support from thesurvivor’s family. Survivors also find greatsupport from other survivors. At some point,they will be reaching out to lend support aswell.A TBI can be a life-altering event, but itdoesn’t mean that you can’t lead a fulfillingand enjoyable life.“Anyone who has had a family member sustain a TBI has a kinship with others who have dealt with the same issues. We arepart of a special family that no one else can really understand.”- Debby Beffa, Chesterfield, Mo.Mother of a TBI survivor
Table of contentsUnderstanding traumatic brain injury .7Treating a new brain injury .17Rehabilitation .23Life after rehabilitation: home, work and school.31Child and adolescent brain injury .45Brain injury and the aging brain.59Resources .65“Look ahead - do not look back. Do not dwell on the ‘what ifs’. “- Sue Orton, St. Louis, Mo.Mother of a TBI survivor
6 The Missouri Greenbook: Living with Brain Injury
Understandingtraumatic brain injuryThe brain and how it worksThe brain is responsible for everythingwe do. It controls all movements,sensations, speech, thoughts andemotions. Surprisingly, for such animportant structure, the brain is very soft,almost the consistency of firm gelatin.The brain (Figure 1) would easily beinjured if it were not contained bythe skull, the bony covering of thebrain. The largest part of the brainis made of two halves, the rightand left cerebral hemispheres,which fill the top and front ofthe skull. The right cerebralhemisphere controls the left sideof the body, and the left cerebralhemisphere controls the right side ofthe body and speech in most people.also works together with the other lobes.The cerebellum, the lower part of the brainlocated in the back of the skull, controlscoordination. The brain stem connects thecerebral hemispheres with the spinal cordand controls basic life-sustaining functionssuch as heart rate and breathing.Figure 1Within the hemispheres are sections calledlobes. Each lobe has special functions but“Learn everything possible about traumatic brain injury. Exploreall available sources of information and use what you learn.”- Arpie Vermillion, Seneca, Mo.Mother of a TBI survivor
The brain (Figure 2) is surrounded bycerebrospinal fluid (CSF), a clear liquid thatis produced by the brain. There are spacesinside the brain, called ventricles, that arefilled with CSF. The CSF flows around thebrain and down the spine, surroundingthe spinal cord and nerve roots all the wayto the lower back. The dura is a thin layerof tissue under the skull and bones of thespine that surrounds the brain and spinalcord and contains the CSF.Traumatic brain injuryA traumatic brain injury is any injury to thebrain caused by a blow or jolt to the heador a penetrating head injury that disruptsthe normal function of the brain. Not allblows or jolts to the head result in a TBI.Figure28 The Missouri Greenbook: Living with Brain InjuryCommon causes of TBI are motor vehiclecrashes, falls, assaults or blast injuries.The injuries are categorized according toseverity as mild, moderate or severe. Inmost injuries, damage occurs immediatelywhen forces are exerted on the brain.Forces are exerted either directly, as in thecase of penetrating or blunt impact, orindirectly as when the brain is subjected tostrong forces of movement.There is a rich network of neuralconnections linking the brain for rapidtransmission and coordinated functions.Injury to the connections can interfere withthe brain’s ability to function as efficientlyas it did prior to the injury.
Sometimes bleeding occurs, which resultsin additional damage to the surroundingbrain tissue. In most injuries, the brainresponds by swelling. Since the brain isenclosed by the rigid skull, swelling in onearea can result in pressure and additionaldamage to the surrounding areas.Skull fractures, or breaks in the bonesurrounding the brain, may occur withor without damage to the underlyingbrain. The bone itself will heal over time.Additional treatment may be required ifthere is damage to the brain beneath thefracture.Concussion is the mildest form of braininjury. When a person has a concussion heor she may pass out or lose consciousnessfor a short time, or experience memoryloss or loss of other brain functionsbriefly. Treatment is usually not necessary,however, it is important to observe thepatient closely for signs that a more severeinjury has occurred.thinking. Patients with contusions mustbe watched closely for signs of additionalswelling, bleeding or further injury of thebrain.Sometimes opposite sides of the brain areinjured when the brain first strikes one sideof the skull during the impact and thenbounces back against the opposite side ofthe skull. This is called a coup contrecoupinjury (Figure 3).A generalized injury to the brain can occurwhen stretching or shearing forces areapplied to the entire brain. This can resultFigure 3In a contusion, a part of the brain isbruised and develops small areas ofbleeding and swelling that can be seenon tests. Patients with contusions oftencomplain of headaches, nausea and slowPage 9
in damage to the connections, or axons,deep in the brain and is called a diffuseaxonal injury. In response, swelling canoccur throughout the brain. Since theaxons cannot be repaired through medicalintervention, treatment is directed atpreventing further damage. Bleeding in oraround the brain is very damaging and isoften treated with surgery.Figure 4Bleeding that occurs between the skull andthe dura, the thin covering over the brain, iscalled an epidural hematoma (Figure 4). Ifthe blood clot is large or increasing in sizeit is treated with surgery to remove the clotand take the pressure off the brain.Bleeding also can occur between the duraand the brain. The blood clot forms whatis called a subdural hematoma (Figure 5).Acute subdural hematomas occur at the timeof the injury and are often associated withdamage to the underlying brain and severeswelling.Chronic subdural hematomas occur mostcommonly in the elderly after a relativelymild head injury. In some cases, a smallamount of blood in the subdural space willcause the space to enlarge slowly over time,producing increasing pressure on the brain.In both cases, surgery is often required.10 The Missouri Greenbook: Living with Brain InjuryFigure 5
Figure 6An intracerebral hemorrhage is a bloodclot within the brain (Figure 6). Surgerymay be required to remove the clot, butsurgery has significant risks because it maybe necessary to go through areas of normalbrain to get to the clot and remove it.Occasionally, bleeding occurs into thespaces filled with CSF. The blood can blockthe flow of CSF so that pressure builds upin the ventricles, and the ventricles enlarge.This condition is called hydrocephalus(Figure 7). Hydrocephalus is often treatedwith a drainage tube, or ventriculostomy,that drains the fluid to a collection bagoutside the body or under the skin into theabdomen.Figure 7Any injury to the brain can affect theintracranial pressure (ICP), the pressureinside the skull. Since the skull is rigid andcannot stretch, swelling, blood clots orblocked CSF can cause everything inside theskull to become tight and the pressure insidethe brain to increase. Much of the treatmentof traumatic brain injuries is directed atkeeping the intracranial pressure as close tonormal as possible.Page 11
Cerebral perfusion pressure is thepressure that pushes blood into the brainand supplies the brain with oxygen. If theblood pressure is low or the intracranialpressure is high, or both, then the cerebralperfusion pressure will be low, and theblood flow to the brain will decrease. Thiscan cause a low oxygen level and possibledamage to the brain (Figure 8).Figure 8Types of TBIBlows to the head can cause injury to thebrain. Sometimes the brain bounces backand forth inside the skull. Other times,objects penetrate the skull and the brain.Both types of injuries are called traumaticbrain injuries. A brain tumor or a strokecan result in the same consequences as aTBI but is not a traumatic brain injury.There are two main types of traumaticbrain injury: closed head injury and openhead injury. Closed head injury (CHI) iscaused when the brain is bounced againstthe skull, often in a back and forth motion,but the skull does not fracture or open.Normal blood flowSome common causes of CHI are:· Motor vehicle injuries· Falls· Bicycle injuries· Sport injuries· Blast injuriesCHI may cause problems in a number ofareas including:· Physical· Cognitive· Emotional· Social relationshipsLimited blood flow12 The Missouri Greenbook: Living with Brain InjuryThe difficulties can even change anindividual’s personality. Because the injurycan affect many places in the brain, CHI isreferred to as a diffuse injury.
Open head Injury (OHI) is a visible injurythat involves a displaced fracture orpenetration of the skull and is less commonthan CHI. A common cause of OHI is agun shot wound. An OHI can cause focal(specific) injury at the place of fracture orpenetration. In some cases the injury maybe more extensive.consciousness: the Glasgow Coma Scaleand the Rancho Los Amigos Scale.Symptoms of TBIThe Glasgow Coma Scale, sometimesknown as the Glasgow Coma Score, isa neurological scale that aims to give areliable, objective way of recording theconscious state of a person. The GlasgowComa Scale assesses a patient’s level ofconsciousness on a scale of 3 to 15.Two signs that indicate the severity of a TBIare:· Time in coma (not medicationinduced)· Posttraumatic amnesia (PTA), thelength of time from the injury to thetime a person begins to rememberthingsThe Rancho Los Amigos Scale is used todescribe cognitive behavior functioningafter a TBI on a scale of 1 to 10. The scaleprovides a way of describing a patient’slevel of cognitive functioning at a givenpoint in time and is mostly used duringrehabilitation.Impaired consciousness, often called coma,is one symptom of TBI. There are twomain ways to measure a person’s level ofFor more in-depth information about thelevels of either scale, ask your health careprovider.Glasgow ComaScale (GCS)(E) Eye Opening Response (1-4)(M) Best Motor Responses (1-6)(V) Best Verbal Response (1-5)E M V 3 to15Rancho Los Amigos ScaleLevel ILevel IILevel IIILevel IVLevel VNo Response: Total AssistanceGeneralized Response: Total AssistanceLocalized Response: Total AssistanceConfused/Agitated: Maximal AssistanceConfused, Inappropriate, Non-agitated:Maximal AssistanceLevel VI Confused, Appropriate: Moderate AssistanceLevel VII Automatic, Appropriate: Minimal Assistancefor Daily Living SkillsLevel VIII Purposeful, Appropriate: Stand-by AssistanceLevel IX Purposeful, Appropriate: Stand-by Assistanceon RequestLevel X Purposeful, Appropriate: ModifiedIndependentPage 13
Effects of TBI·It is hard to predict what changes are likelyto occur as a result of a TBI. Each individualis unique. The effects of TBI are not alwaysapparent. TBI is often called “the silentepidemic” because thousands of people··“ It is hard to predict what changesare likely to occur as a result of aTBI. Each person is unique. ”with TBI have symptoms that are notgenerally evident to others.The changes experienced after a TBIdepend on a number of factors including:· Pre-injury: educational andvocational history, health history,history of alcohol and substanceabuse, intellectual ability· Injury characteristics: severity of theinjury, secondary complications· Available medical and rehabilitationresources· Emotional reaction to the injury· Family and social supportCommon problems associated withinjury to the brain may include:· Motor: weakness or paralysis ofone side of the body (hemiplegia),poor balance and coordination(ataxia), less endurance, abnormalmuscle tone and stiffness· Perceptual: hearing, vision,taste, smell, touch, knowing therelationship of the body to fixedobjects14 The Missouri Greenbook: Living with Brain Injury·Speech and language: difficultyin expressing thought (aphasia),speaking clearly (dysarthria)Executive functioning: thinking,reasoning, paying attention,judgment, problem-solvingMemory and learning: problemswith short-term memory (storingand retrieving recent information),slower learning, limitations inlearning, difficulty with retrieval oflong-term memoryEmotional changes: moody, easilyfrustrated, anxious, impatient,angry, depressed and low selfconfidenceIn addition, a person with a TBI might findchanges in basic bodily functions. Theseinclude:· Body temperature control· Level of alertness· Swallowing· Bowel and bladder function· Sleep patterns· Endurance for physical and mentalactivities· Sexual functionSeizures may occur after a brain injury.They may happen immediately or muchlater. It is difficult to predict if a survivorwill develop seizures.A diffuse head injury may be mild tosevere. It may cause various difficultieswith memory, processing speed, attentionand reasoning.
A focal injury, on the other hand, affects aspecific area of the brain. The difficultiesfrom a focal injury are often more specificand may affect one area such as languageor perception.Following a brain injury, damage to theoptic nerve and other parts of the braincan result in a visual blind spot, partialvision loss, or one or more types of visualfield deficits.Visual field deficits after brain injury canbe overlooked early on as more severe andlife-threatening injuries sustained from thebrain injury are treated. People with braininjury should undergo a vision evaluationas soon as possible after injury. Even ifproblems with vision are not perceived,deficits may be present and can have anextensive impact on life and rehabilitationefforts.········Diminished concentrationMemory impairmentIrritabilityDepressionAnxietySleep problemsComplaints of being physically sickwith no apparent reasonHypersensitivity to noise andsensitivity to light (photophobia)Often PCS symptoms cannot be seenby others. This can lead to loss of selfconfidence, frustration, depression andanxiety.Moderate brain injury may be defined asan injury to the brain resulting in extensiveloss of consciousness and PTA as well assome finding of injury on brain scans.Individuals with moderate TBI are likely toexperience a higher incidence of cognitive,physical and emotional changes.TBI severityConcussion/mild TBI (MTBI) is define
What Everyone Should Know About Brain Injury.” Missouri Head Injury Guide for “ People Interested in Traumatic Brain Injury. 2001. Missouri Head Injury Advisory Council and Missouri Department of Health. Traumatic Brain Injury-Related Hospital Discharges, Results from a 14 State Surveillance “ System, 1997.”
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