A guide for patients following traumatic brain injury (TBI)
What is a traumatic brain injury (TBI)?
A traumatic brain injury refers to any form of injury to the brain that has occurred as a result of a blow or jolt to the head. It is most commonly caused by road traffic incidents, falls and assaults. It is overwhelming and frightening both for the person who has suffered the injury and their carers. Every brain injury is likely to be different, making it difficult to predict the effects on a particular person.
Common types of TBI
The type of TBI caused is dependent on the part of the brain that is injured, as well as the structures involved. These are classified by different terms; you could have one or more of these:
Extradural haematoma (EDH): Blood that forms between the inner surface of the skull and outer surface of dura mater. It is frequently associated with skull fractures, and more common in younger patients.
Subdural haematoma (SDH): Bleeding between the dura mater (the outer most membrane covering the brain) and underlying brain. These bleeds are further subdivided into two main types:
- Acute subdural haematoma (ASDH): Fresh blood which may put pressure on the brain.
- Chronic subdural haematoma (CSDH): This represents old liquefied blood, which usually takes a few weeks to form after the initial injury.
Sub-arachnoid haemorrhage (SAH): SAH is leakage of blood from a damaged blood vessel within the arachnoid membrane that covers the brain.
Intracerebral haemorrhage (ICH): ICH is where blood bursts into the brain tissue and causes damage to the brain.
Diffuse axonal injury (DAI): Widespread bleeding in various areas of brain tissue due to damage of nerve fibres within the brain.
Contusions: Bruises to brain tissue caused by direct or indirect trauma to the brain substance.
Contrecoup injury: Injury/bleeding to the brain that occurs directly opposite to the side of impact.
Skull fracture: Break in the cranial bone (skull), caused by impact or a blow to the head.
How is a brain injury diagnosed?
Initially a history of how the injury has occurred will give the team valuable information to help them obtain a diagnosis. (This can come from family, friends, or witnesses if you are not able to recollect the events on admission). A full examination will also be carried out.
Whilst in hospital you will have your observations monitored regularly; you may have your urine output measured, and you will be checked for any fluid leaking from your ears or nose.
Specialist investigations
Computerised Tomography (CT) Scan
The most commonly used investigation in brain injury. It provides detailed images of the skull and brain using a series of multiple X-rays which a computer then converts into a 3D image. CT scans are particularly good at showing skull fractures, blood in and around the brain, and identifying any swelling within the brain.
Magnetic Resonance Imaging (MRI)
This investigation uses magnetic fields, radio waves and a computer to produce detailed pictures of the brain and other cranial structures. It can detect more subtle changes within the brain and soft tissues.
CT Angiography (CTA) or Magnetic Resonance angiography (MRA)
These use an iodine-rich contrast material and a CT or MRI scanner to provide very detailed images of the brains blood vessels to look for abnormalities.
Treatment of brain injuries
Treatment options vary depending on the severity of the brain injury.
Conservative management
If the neurosurgeon considers that brain surgery is not required, then a period of close observation may be indicated. The period of observation allows the medical team to observe any change in your condition, they may also perform additional scans to help plan whether surgical treatment may be needed later.
Surgical intervention:
Burr hole drainage: Small holes are drilled in the skull to permit drainage of old liquefied blood (see chronic subdural haematoma). A plastic tube (drain) may also be left in place for 24-48hr to assist with ongoing drainage.
Middle meningeal artery (MMA) embolisation: A catheter is guided through the femoral (groin) or radial (wrist) artery up to the vessels in the neck supplying blood to the subdural haematoma. Once the catheter is in place, small particles are injected to occlude the artery and stop any further bleeding contributing to the subdural haematoma. The procedure aims to stop the subdural haematoma from growing and the existing bleed will then be left alone for your body to reabsorb naturally.
Following this procedure there is some advice for caring for the puncture site to groin/wrist:
If the problem is considered serious, help should be sought from your local accident and emergency department immediately. Otherwise, you should contact your GP, NHS Direct or visit your local walk-in centre.
- Do not strain or lift anything greater than 10lb for 10 days following the procedure.
- Drink plenty of water or juice 24 hours after the procedure to help the kidneys flush the dye from your body (about two litres or 10 glasses)
- Do not do any physical exercise or sexual activity for 24 hours following the procedure.
- Keep the dressing on, clean and dry for 24 hours following the procedure.
- Seek urgent advice if the site bleeds and has not stopped after 15 minutes of firm (but not excessive) manual pressure.
Although rare you should report to your A&E department if you have any new stroke like symptoms or severe headache.
Craniotomy: A portion of the skull is removed to allow access to the brain to perform surgery. The bone is secured back in place at the end of the operation using small metal plates and screws.
Decompressive craniectomy: When the brain is very swollen (either before, or at the time of surgery) it may be necessary to remove a large portion of skull to give the brain more space. It is normal for your head to look misshapen after this procedure, and you are advised not to lean on the side of your head where the skull has been removed. A helmet can be provided to protect the head for those who are a falls risk. At a later date it is likely that a procedure called cranioplasty will be offered. This means replacing the skull that was removed with a plate. These are made with different materials including plastics and metal. This will be discussed further with your surgeon when the operation is planned.
Other interventions
Induced coma
You may have had a low conscious level or raised intracranial pressure (ICP) that required you to be placed in a deep state of unconsciousness (induced coma) to give the brain the best chance to rest, heal and recover. Sedatives were likely to have been used. These types of medication can help to relax the brain and prevent raised pressure inside the head.
Ventilator
This is a machine that uses positive pressure to mechanically breathe for patients that are unable to breathe on their own when placed in an induced coma. It delivers accurate levels of oxygen to ensure the patient has adequate oxygen levels to allow the brain to heal.
Intracranial pressure (ICP) monitoring
If a traumatic brain injury has caused bleeding or swelling inside the skull, the delicate structures of the brain can be damaged. The pressure inside the skull can be measured by drilling a small hole into the skull and placing a thin wire, connected to a monitor, which gives a constant reading of ICP. This measurement is used to determine if the swelling is subsiding or if an intervention is required to relieve the pressure.
External ventricular drain (EVD)
You may have been treated with an EVD system. An EVD is a catheter (a thin, plastic tube), placed in the ventricles (the fluid-filled spaces) of the brain. This is connected to a drainage system outside the body, draining off excess cerebrospinal fluid (CSF) or blood that is causing increased ICP.
Which health professionals may have been involved in your care?
Neurosurgeon: A specialist doctor who performs brain and spine operations.
Neurologist: A doctor who specialises in neurological conditions but does not operate.
Intensivist/Anaesthetist: A medical specialist who manages seriously ill patients within various settings, including intensive care.
Nurse: This may be an ITU or ward nurse or a nurse specialist.
Head injury Advanced Practitioner: A health professional with specialist interest and experience in traumatic brain injury.
Trauma Therapy Co-ordinator: A specialist who assesses your therapy and rehabilitation needs.
Occupational Therapist: A specialist health professional who treats people after brain injury, to help improve everyday activities, including thinking skills.
Physiotherapist: A specialised health professional who treats people following brain injury, to help improve physical activity, including strength or balance.
Speech and Language Therapist: A specialist health professional who assesses, plans and treats people with communication, speech, or swallowing problems.
Dietitian: A specialist health professional who assesses the nutritional needs of patients to provide practical advice and treatment that will aid their recovery.
Rehabilitation Consultant: A specialist doctor with an interest in the longer term recovery of patients with a neurological deficit or who may have complex rehabilitation needs.
Pharmacist: A specialist that review your medications.
Neuropsychologist: A specialist doctor who assess your cognition and helps you adapt and recover.
Neuropsychiatrist: A specialist doctor who assess your mood. You may also be seen by specialist mental health nurses whist on the ward.
Inpatient pathway of care
What can happen after a brain injury?
The kinds of difficulty a person can develop after a brain injury and the severity of these can vary widely. Some of the common problems are described below.
Physical effects
There are a wide variety of physical effects that can occur from a TBI.
Visual disturbances, hearing loss, speech difficulties, loss of movement in specific limbs (weakness or paralysis), sensation loss, loss of co-ordination, dizziness, reduced balance, impaired mobility, ongoing headaches and tiredness. Altered, reduced or loss of taste and smell is a common symptom.
Cognitive effects
These are impairments to your thinking and mental abilities, such as reduced ability to concentrate, difficulty with memory and recall. Other changes may be more significant than the physical disabilities. These include reduced attention, slower information processing, and impaired insight/empathy, difficulty recognising faces and objects, and language problems. You may not recognise that there is anything wrong, however family and staff will. You may initially experience a period of post-traumatic amnesia (PTA). You may be disoriented and unable to retain information, your behaviour may be unusual and difficult.
Epilepsy or fits
Rarely people who have had a TBI develop epilepsy causing fits or seizures and the risk is usually in the first year after the injury. One seizure does not mean you have epilepsy. Epilepsy is treated with medication, and you will normally be reviewed by a Neurologist to ensure appropriate management. If you have had seizures, you have to inform the DVLA and cannot drive until advised otherwise.
Emotional problems
Following an injury to the brain it is common to display emotions such as anxiety, depression, or anger. However, such feelings can become problematic when the emotions are intense and frequently occurring this can cause devastating effects to yourself, family and friends.
Specific treatments may be useful. A combination of psychological support and medical input may be indicated. Learning about the physical effects of emotions, or recognising the situations that trigger them, is key to managing some of the difficulties. There are also certain strategies for aiding mental relaxation, and sometimes physical activity itself can help. Remember that tiredness can make anyone more emotional, and a good sleep may provide some much-needed relief.
Various personality changes after a brain injury can lead to becoming more impulsive or disinhibited, and occasionally someone previously known as quiet and reserved can seem strangely jokey, inappropriate, or provocative. For those who knew the person before the brain injury these changes can be some of the most difficult.
Symptoms may last for days, weeks, or even months.
Coping with the effects of a brain injury
Below is some general advice. Remember that every brain injury is different, so every recovery is different.
A different person
After a brain injury you may appear very unlike your 'old self'. You and others might find that characteristic mannerisms and behaviours do not appear to exist anymore. Such changes can be subtle or obvious depending on the nature of the injury. Usually there are one or more features typical of the person that makes it reassuring that they are still there, and over time more of the person may return.
Anger
It is not uncommon to experience a period of anger and/or frustration after brain injury. For those around you this can be very distressing, and it can be difficult to decide the best way forward. It can help to learn what is causing the anger, so that you are able to avoid it in future. Family or friends may learn to identify when you are displaying these symptoms/emotions, and you will be encouraged to talk about it. Being able to listen in a non-judgmental way can be helpful. Family and friends should realise that sometimes it is best to give you space at these times before discussing this further with you to identify any emotional causes/triggers.
Family and loved ones
The effects of a brain injury can take its toll on those who are close to you. Feelings of devastation, disbelief, guilt, and stress are very common, and coping with life adjustments may be exhausting. It can help to learn about what has happened overall, as well as obtaining practical and emotional support, and your local brain injury services should be able to help with this. You can help your loved one by giving them plenty of time, explain clearly what you mean in conversation, repeat instructions/information, allow them to try and complete tasks themselves.
Understanding the changes
A brain injury can result in the loss of various skills. People worry about leaving someone alone, in case they come to harm from doing things they can no longer manage. If you are unable to fully understand your problems, you may perform tasks that are unsafe. In view of this family and friends may need to ask someone else to stay with you. It can also help if family and friends sometimes remind you or gently draw your attention to these potentially dangerous situations.
Advocacy
An advocate is someone who can act on a person’s behalf in various situations. They may assist the brain injury patient with help filling in forms or being accompanied to meetings for practical support. Charities such as Headway and The Brain Charity will be able to offer you advice and give you further information.
Sometimes due to the brain injury, patients are unable to make informed decisions about future treatment, or discharge home. They may not understand why they are in hospital and attempt to leave or became very agitated. In some circumstances it may be required for staff to apply for a Deprivation of Liberty Safeguards (DoLS). This will allow family and staff to act in a person’s best interests and prevent them from leaving the hospital.
Going home and everyday activities
Driving
If you hold a driving licence you are legally required to notify the Driver and Vehicle Licensing Agency (DVLA) following a TBI (www.DVLA.gov.uk, form B1). Failure to do so can result in a fine and makes your insurance invalid. You will not be able to drive until you have received DVLA approval and your Doctor has confirmed you are recovered. This can sometimes be around six months or longer.
Flying
It will be up to your Consultant when you are able to fly, but if you have had surgery then you will probably be asked to wait at least six weeks before you fly.
Returning to work
The best time to return to work will depend on your job and the type of brain injury suffered. Generally, it will be advisable to talk matters over with your employer first, even if you feel fine and have no specific problems. This is often because your overall energy levels may be reduced, and a phased return to work might be more sensible. Your employer has a duty to be supportive of your attempts to resume employment, and usually it is in their interests to help you adjust to any new circumstances. The Brain Charity can provide help and support if you are having problems returning to work, their number is printed at the bottom of this booklet. Your GP may be able to access vocational rehabilitation if this is required, to help you return to work.
https://www.headway.org.uk/about-brain-injury/individuals/information-library/
Education
After a brain injury there can often be difficulties with returning to education. Modifications in the role or even type of education may be necessary. Continuing education or employment can be very important for developing skills, confidence and self-worth, and every effort should be made to facilitate this.
https://www.headway.org.uk/about-brain-injury/individuals/information-library/
Sexual activity
You can resume normal sexual activity as soon as you feel able.
Alcohol
After a brain injury the brain becomes more sensitive to alcohol. In addition, if you drink alcohol you may experience more headaches, along with a possible increased risk of seizures (fits). It is therefore sensible to abstain from any alcohol for at least six months post-injury, and do not drink if still experiencing symptoms and then reintroduce it slowly if you choose to.
The government suggests that women do not drink more than two to three units each day and men no more than three to four units each day.
Removal of sutures/clips
You will normally have removal of any stitches/clips 7-10 days after surgery if it was performed, as advised by your consultant. You can wash your hair after 48hrs with mild/baby shampoo, just let water gently run over head and then pat dry.
Sport and exercise
Exercise following a brain injury is fine to do and good for healthy living for the future. However initially activities should only be performed at a mild intensity and gradually built up. Be aware that your energy levels will be lower than previously, and you will tire a lot quicker than normal.
It is not advisable initially to do any strenuous activities such as long distance running or strenuous gym exercise (like lifting weights) for at least three months or whilst remaining symptomatic.
You may start swimming once your wounds have fully healed. However, it is advisable to go with someone in the early days, especially if there has been a history of seizures.
You should avoid contact sports like rugby, football and martial arts until discussing these activities with your Consultant, as the risks of another head injury may be very serious.
Later effects
You may initially present with no symptoms or difficulties but may experience changes weeks to months following your injury. For example, low mood, motivation, dizziness and fatigue. These symptoms may affect family relationships and how you engage in day-to-day tasks. Some people also experience dreams or flashbacks of the incident when their brain injury occurred. If you experience any of these symptoms following your discharge home please contact your GP.
Red flag symptoms that would prompt you to attend your local emergency department:
- Severe or persistent headache that gets worse and does not go away
- Repeated vomiting or nausea
- Bleeding or discharge from the ears or nose
- Fits or seizures (shaking or twitching)
- New or worsening blurred or double vision
- Any new face, arm or leg weakness, or any existing weakness that gets worse
- New difficulty in swallowing or coughing when eating or drinking
- New slurred or unclear speech
- Unusual or confused behaviour
- Increasing drowsiness
For your information
Name: ______________________________________________________________
Consultant: __________________________________________________________
Follow up & services referred to: _________________________________________
___________________________________________________________________
___________________________________________________________________
Appointments: _________________________________________________________
Notes
The Walton Centre contact details
For any emergency see your GP or go to your local Accident and Emergency department.
The Walton Centre switch board: 0151 525 3611
Head Injury Advanced Practitioner 0151 556 3086
Head Injury Clinical Support 0151 556 3947
Trauma Therapy Coordinator 0151 556 3863
Specialist Spinal Nurses 0151 529 8853
For any concerns or resolving issues our Patient Experience Team can be of assistance to offer further support and confidential advice. Contact the team on 0151 556 3090/3092, or email wcft.patientexperienceteam@nhs.net
Where to get further help and support:
NHS Direct: Dial 111 for advice on medical queries that are not a 999 emergency.
Headway: (the brain injury association offer practical and emotional support) Free phone 0808 800 2244 or visit www.headway.org.uk
The Brain Charity: Norton Street, Liverpool L3 8LR, Telephone 0151 298 2999
Road Peace (aims to support emotionally and practically the injured victims of road traffic accidents) : 0845 4500 355 or www.roadpeace.org.uk
D.V.L.A. Driver Vehicle License Authority, Drivers Medical Group, DVLA, Swansea, SA99 1DL 0843 515 8104. WWW.DVLA.GOV.UK / Medical enquiries: 0870 600 0301
NHS Free smoking helpline: 0800 0224 332 www.smokefree.nhs.uk
Advice on Alcohol: www.drinkaware.co.uk or www.drinkingandyou.com (there are services in each local area, ask your GP for a referral).
Advice on Drugs: www.talktofrank.com
Samaritans: call free on 116 123 – www.samaritans.org
Talk Liverpool: www.talkliverpool.nhs.uk 0151 228 2300. (self-referral talking therapies)
Access Sefton: https://www.insighthealthcare.org/our-services/talking-therapies/find-a-service/access-sefton/ 0151 955 3200 (self-referral talking therapies)
Brain and Spine Foundation: Research, education and information
Helpline: 0808 808 1000
Website: www.brainandspine.org/uk
Brain and Spinal Injury Charity (BASIC)
Helpline: 0870 750 0000
Website: www.basiccharity.org.uk
Last Updated: 01 September 2024
Review Date: 01 September 2026
Author: Sarah Jane Hewitt, Jacqui Isaac, Susan Whittam