It is very early days since your injury. You are wondering what happened to you. You might not remember why you are in hospital, or how long it has been. Some people wake up to find several months or years of their lives have disappeared. They can’t remember what their earlier life had been like or recognise their family members.
Researchers call this initial state of confusion after a brain injury waking up to the unknown (1). It’s a frightening experience, but it’s very common and it will pass.
“Last thing I remember I was at Bunnings. Probably the next thing I remember was 2-3 days into [my stay at] Royal Perth Hospital. I have no memory of it, even though I was conscious. I was in the ward with all these white lights. All white lights and all white beds. Is this a cuckoo’s nest? I screamed as I was so scared.”
- Person with TBI
You have had a traumatic brain injury. You may hear doctors and other healthcare staff refer to your traumatic brain injury as a ‘TBI’. This means you have had an injury to your brain that was caused by a traumatic event – like an accident. TBI is very common. Each year, between 190,000 and 200,000 people are diagnosed with a TBI in Australia (2).
The most common cause of TBI is through an accident that causes injury to the head and damages some part of the brain. You might have had one of the following happen to you:
You may have had an open (or penetrative) head injury or a closed (or non-penetrative) head injury (3). An open head injury happens when an outside force breaks the skull. A closed head injury happens when an outside force such as a punch to the head doesn’t break through the skull but is still strong enough to cause damage or swelling to brain.
TBI is considered a medical emergency. When you have a TBI, you are immediately sent to hospital. During your hospital stay, the doctors will assess you to determine how serious your brain injury is. The doctors will also use brain scans, such as a CT or MRI, to work out how much damage your brain has suffered. Understanding the injury helps doctors predict your recovery, what treatment you will need, and how best to manage your injury. There will be more information on your hospital stay later in Module 3: What to expect in the early days of recovery.
Waking up in a hospital can be quite a frightening experience. If you’re having trouble remembering what happened, ask your doctor or team around you to explain what happened.
You may not understand everything that is being said so ask the hospital team to explain in pictures or to write it down for you, so that you can remember and ask more questions.
Hearing about what happened to you can be quite stressful. You may wish to request to speak to a counsellor or pastoral care worker or anyone that can help you understand the news.
People can have mild, moderate, or severe TBI. Your medical team will make decisions about what level of TBI you have, based on different clinical signs. The most used signs are the:
Your doctors might also use a scoring system called the Glasgow Coma Scale (GCS) (5) to determine how severe your TBI is. The GCS grades how severe your TBI is according to how responsive you are after injury – including your eye-opening response, verbal response (speech), and motor response (movements). A GCS score ranges from 3 to 15, and a lower GCS score is generally associated with a more severe TBI.
Prognosis is a medical word used by doctors. This describes the long-lasting effects of the TBI on your life. This includes expected quality of life, skills, complications, and life expectancy after brain injury. Generally, when you have a mild TBI, improvement is expected to take 3–6 months (6). People with moderate to severe TBI are expected to have a longer recovery journey.
Improvement can be quick and sometimes even spontaneous in the first 0-6 months. Spontaneous recovery is a medical phenomenon that happens when skills or functions you might have lost when you first woke up in hospital suddenly come back – without any treatment or exercises (7). Spontaneous recovery commonly happens during the initial weeks to months after brain injury (8).
Scientists believe this happens because the brain is able to trigger millions of brain cells to regenerate immediately after the injury (8). After these initial weeks to months, less spontaneous recovery occurs. Improvement is still possible but it will be slower and will require ongoing rehabilitation which can take up to 2 years or more (9). Even after rehabilitation has finished people can continue to learn new skills through practice and persistence.
For some people with moderate or severe TBI, it is not always possible to completely return to the same life as before injury. However, many people are able to lead a meaningful and fulfilling life and find new ways to work around their injury and limitations (10). This can be achieved with ongoing support, therapy, hope and acceptance.
There will be more information on recovery later in Module 5: What does recovery look like?
It can be quite devastating to experience a TBI. The early days can be very difficult. In the past, it was thought that improvement plateaued or stopped at two years after injury (11). However, we know from newer research that people with a TBI are able to improve their skills and functioning for many years after injury (12). There are many factors which play a part in recovery after brain injury – including your motivation, environment, support, adjustment, and participation in rehabilitation (13).
New research led by the Brightwater Research Centre also suggests that psychosocial functioning is an important factor in recovery after brain injury (14). Psychosocial functioning includes your mental health, outlook, mood and emotional wellbeing. People who have a more positive outlook after injury have better overall long-term recovery. There will be more information on the role of mental health in recovery after TBI in Module 8: Mood, behaviour and mental health.