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Traumatic Brain Injury TRAUMATIC BRAIN INJURY ― RESOURCE GUIDE When your loved one is hospitalized with a Traumatic Brain Injury (TBI), you have many questions and concerns. What care will they be receiving? What does the future hold? Coping with TBI is a lifelong experience for both patients and families. This handout was created to help you locate answers to many of those questions. Many websites are available that can provide you with information regarding TBI. However, the information may not always be current or appropriate for your particular situation. The following are some websites that have been chosen for their accuracy and professionalism. They address recovery time in the hospital as well as long-term rehabilitation. Finally, we encourage you to bring your questions to the nurses, physicians, therapists, and other health care workers who are caring for your loved one. GENERAL INFORMATION AND SUPPORT Brain Injury Association of America Centre for Neuro Skills www.biausa.org www.neuroskills.com Phone: 1-800-444-6443 Phone: 1-800-922-4994 This is the premier site for information and references on TBI. Medical, rehabilitative, and support information are just a few of the things you can find on this very comprehensive site. This site is provided by a rehabilitation center and is medically oriented, but provides a lot of useful current information about neurological injuries. Brain Injury Association of Virginia Headinjury.com www.biav.net www.headinjury.com Phone: 703-761-0750 Phone: 206-621-8558 This is the state affiliation of the Brain Injury Association of America. Educational and support information specific to Virginia is provided. It also has a listing of Virginia support groups. This is a non-profit site operated by head injury survivors. It provides information, discussion groups, and self-assessments. Traumatic Brain Injury Survival Guide Brainline www.tbiguide.com www.brainline.org Phone: 231-929-7358 Phone: 703-998-2020 This site is written by Dr. Glen Johnson, a This site offers information and resources about preventing, neuropsychologist. It is written in plain language and addresses the medical aspects of TBI, the types of symptoms the injured person may experience in the future, and how to deal with those symptoms. treating, and living with TBI. Webcasts and a newsletter are available. This site serves anyone whose life has been affected by TBI. LOCAL BRAIN INJURY REHABILITATION RESOURCES Charlottesville - Brain Injury Support Team Contact Carol Ragland: [email protected] Meets the 3rd Tuesday of the month from 6:30-8:00pm @ UVA Health South Rehab Hospital - 1st floor conference room at 515 Ray C. Hunt Dr. - Charlottesville, VA. Virginia Department for Aging and Rehabilitative Services (DARS) www.vadrs.org/cbs/biscis.htm -- Phone: 1-800-552-5019 The Brain Injury Services Coordination (BISC) Unit, located within DARS' Community Based Services Division, serves as a point of contact for customers seeking general or agency-specific information about brain injury resources in Virginia. There are multiple state-funded Brain Injury Services programs overseen by DARS. Refer to the website for more specific information on current programs and types of services provided. The Bridge Line (formerly Virginia NeuroCare and Building Bridges) Leigh Wion – Program Administrator Daniela Pretzer – Executive Director Physical Offices/Clubhouse Program: 953 2nd St. SE, Suite 410 – Charlottesville, VA www.thebridgeline.org -- Phone: 434-989-1274 The mission of The Bridge Line, a non-profit organization, is to support and facilitate vocation training, residential living, and successful community re-entry, as well as to enrich the lives of persons impacted by brain injuries. Wilson Workforce Rehabilitation Center www.wwrc.net/braininjuryservices.htm -- Phone: 1-800-345-9972 This Rehabilitation facility is located in Fishersville, VA. They provide residential and outpatient programs including rehabilitation therapy/assessments, vocational training, driving evaluations, wheelchair assessments, brain injury clinics, neuropsych assessments, support groups, and more. Crossroads to Brain Injury Recovery [email protected] -- Phone: 540.568.8923 This agency provides community-based services for individuals in the Shenandoah Valley who are affected by brain injury. Services include but are not limited to case management, life skills training, education, outreach, and advocacy. Serves children, youth, and adults with a documented brain injury affecting two or more life areas. Free of cost but a limited number of slots are available. BOOKS RECOMMENDED BY FAMILIES Living with Brain Injury: A Guide for Families, by Richard Senelick. 3rd ed, HealthSouth Press, 2013. Also available in the UVa Health Sciences Library. Over My Head: A Doctor’s Own Story of Head Injury From the Inside Looking Out by Claudia Osborn. Published by Andrews McMeel Publishing, 2000 Where is the Mango Princess? A Journey Back from Brain Injury by Cathy Crimmins. Published by Vintage Books, 2001. UVA BRAIN INJURY RESOURCES Acquired and Traumatic Brain Injury Clinic – Pediatrics UVA Battle Building, 4th Floor - 1204 W. Main St. www.uvahealth.com (search for Acquired Brain Injury Clinic) Phone: 434.924.5272 Pediatric patients are seen for evaluation and treatment of acquired or traumatic brain injuries. Brain Injury and Sports Concussion Clinic Dr. in Charlottesville, VA www.uvahealth.com (search for Brain Injury Concussion Clinic) 7246) UVA Neurology Clinic – 500 Ray C. Hunt Phone: 434-98-BRAIN (434-982- This interdisciplinary clinic provides comprehensive care for those with mild TBIs/concussions. Neurobehavioral Intervention Team This informal, multidisciplinary consult service assists in the management of neurological or neurosurgical patients whose behaviors make them a danger to themselves or others, or otherwise prevent them from basic participation in nursing or therapy services. Teams are coordinated by the Unit Manager, and include representatives as needed from multiple disciplines. Behavioral management plans are developed for patients and family training is completed as needed. Brain Injury Quality Support Team This is a multidisciplinary group dedicated to improving the care of patients with brain injuries. The group’s mission is to promote optimal treatment and offer support to UVA patients with brain injuries and their families, as well as promoting community education and awareness. “Like” us on Facebook at www.facebook.com/BIQST! Virginia Driving Safety Laboratory Lee Street Phone: 434-924-5314 UVA West Complex, Barringer IV - 1335 This lab provides comprehensive driving assessments for aging drivers and people with cognitive or physical limitations following stroke or traumatic brain injury. Service include vision testing; assessment of driving knowledge, coordination, and reasoning; driving simulation tests; and therapy for road rage and driving-related phobias. Reports are not sent to the Department of Motor Vehicles unless requested by the patient. Possible Procedures Following Brain Injury There are many procedures that may be needed after a brain injury. Three of the most common procedures are described below. Procedures for Measuring and Relieving Intracranial Pressure (ICP) After a brain injury, the brain may become swollen from excess or blocked fluid. Swelling creates pressure inside the skull that can cause further injury to brain tissue. The doctors may insert a device to measure this pressure (known as "intracranial pressure" or ICP). There are two types of devices commonly used to measure pressure. You may hear these devices called a "bolt" or "venticulostomy." The bolt is a small, narrow piece of tubing with a sensor at the end. It is placed through a small hole in the skull into the brain tissue. The ventriculostomy, also called an external ventricular drain or EVD,is placed in one of the fluid-filled pockets in the brain called "ventricles." The doctors decide which device to use based on scans taken of the patient’s brain. The procedure can be done at the bedside or in the operating room. What is the bolt or venticulostomy procedure like? The skin is numbed with medicine to decrease discomfort. The device is inserted through a small hole made in the skull. The other end of the catheter is then connected to a bedside monitor that tells the doctors and nurses if the ICP gets too high. The catheter will be taken out when the pressure no longer needs to be watched. What can be done to lower intracranial pressure? The patient’s head will be positioned to decrease pressure inside the skull. It is also important to keep the patient calm, so the room will be kept quiet and medication may be given to keep the patient calm or to prevent the patient from moving. If the catheter is placed inside the ventricle, excess fluid can be drained into a small bag. This will help bring down the pressure inside the skull. The doctor or nurse can tell you more about what is being done to lower ICP. Procedure to Assist in Breathing Initially, a tube may be placed into the trachea (“windpipe”) through the mouth. The tube is attached to a mechanical pump (“ventilator”) to help with breathing. The tube also allows the nurses and respiratory therapists to remove secretions (phlegm) from the lungs through a process called “suctioning”. Some patients with brain injury need help with breathing or keeping the throat clear of phlegm for an extended period of time. In this case, or if the patient also has many broken bones in the face, the doctors may decide that a tracheostomy tube ("trach") should be inserted. What is a trach? A trach is a small opening in the neck through which a tube is passed to the windpipe (trachea). The doctor will make the incision for the opening and insert the tube either at the bedside in the intensive care unit (ICU) or in the operating room. Please be aware that the trach tube will make talking difficult. Most people who are awake and have a trach can only communicate by mouthing words or writing. Procedure for Feeding What is a feeding tube? Initially, a small tube may be passed through the nose or mouth into the patient’s stomach or intestines. This tube, referred to as an “NG tube” or an “OG tube” can be used to give medications and nutrition (“tube feeds”). Some people with brain injury are unable to swallow well enough to get good nutrition for an extended period of time. In this case, the doctors may place a feeding tube directly into the stomach through the abdomen. This procedure may be done in the ICU or in a special procedure area of the hospital. FAQ: http://www.healthsystem.virginia.edu/docs/per/frequently-asked-questions-about-braininjury/at_download/perdocument Rehabilitation after a Brain Injury A brain injury can cause physical changes as well as changes in knowing, thinking, learning and judgment. These changes impair a person's ability to live on his or her own and function as well as prior to injury. Physical, occupational and speech therapy (together known as "rehabilitation") will be needed to help bring back as much function as possible. These services usually begin while the person is in the hospital. Depending on the individual's needs, further rehabilitation after hospital discharge can take place in a variety of settings: in an inpatient rehabilitation hospital such as UVa-HealthSouth (located 2 miles from UVa Medical Center), in a skilled nursing facility, in the community as an outpatient, or at home through home health services. The hospital social worker and therapists can help the family determine the right setting. Brain injury can result in hospital, rehabilitation and long-term care costs, as well as loss of income from being unable to work. There are many programs that can help with financial issues: Medical and rehabilitation costs may be covered by private insurance, Medicare, Medicaid, and/or Veterans Affairs benefits. There are also some hospital-based financial assistance programs. Loss of income can be addressed through programs such as General Relief, Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI). In Virginia, the Department of Rehabilitative Services (DRS) can assist a person with job retraining and other employment assistance after sustaining a brain injury. Applying for these programs is complex and time consuming. The hospital social worker can assist the family with understanding the programs and completing applications. Why is my loved one acting like this? Managing agitation in the head injured patient What is agitation? Agitation is an excess of one or more behaviors that interfere with functional activities. Behaviors can include: decreased attention span, impulsiveness, frustration, uncooperativeness, resistance to care, self-stimulating behaviors (rocking, tapping, rubbing textures, etc.), restlessness, repetitive behaviors, etc. This is a normal part of recovery after a head injury. Agitation can sometimes result in aggression towards self or others. What is your team doing to help? First, we are educating the family and friends of the patient, so that they can be a part of the healing process. We are making and following recommendations that we know can make a difference (e.g. modifying the environment, behavior management). Lastly, we are following a medication guideline that can help the patient with their agitation, so that they can participate in functional activities. What can family and friends do to help? During Visits: Keep the room and surrounding area quiet. Turn off the TV and radio when you are visiting, and especially during meals. No more than 2 visitors at a time. Keep visits short and focused. Only one person should talk at a time. Observe signs posted in the room placed by your team members. They can help guide you in the care of your loved one. Try to keep daily routines the same. The team may have a schedule for daily activities, which may include therapies, bathing, meals, rest breaks, and visitation times. There will be scheduled rest breaks during the day. Please respect these and schedule visits accordingly. Patient Orientation: Remind the patient where they are, what the date is, and what happened to them. Don’t quiz them constantly, as this may increase agitation because they don’t remember the answers. Bring in familiar items: pictures, 1-2 stuffed animals, etc., but not too much stuff that the room is visually busy. In General: Note behaviors that increase or decrease agitation. Make your team aware of them. Give patient time to respond when you ask them a question. It may take them longer to think of answers after their injury. For more education, please ask your therapist or nurse.