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Living with a brain or spinal cord tumour

A brain or spinal cord tumour and its treatment can change how the mind and body work. You or your family members may notice changes in how you speak and your personality, memory, movement, balance or coordination.

The types of changes you experience will depend on the part of the brain affected by the tumour and what treatment you have had. If you or your family feel like you are behaving differently, talk to your doctor, nurse or cancer care coordinator.

Rehabilitation is treatment designed to help people recover from injury or disease. After treatment for a brain or spinal cord tumour, most people will have a rehabilitation assessment to identify their needs and ways to manage them. A range of therapies can help restore your previous abilities or help you adjust to any changes.

The changes may be difficult to cope with emotionally, and you might find that your self-esteem and your relationships are affected. Talking to a counsellor or someone who has had a similar experience may help. Call Cancer Council 13 11 20 to see what support is available.

Financial support for people with disabilities

The National Disability Insurance Scheme (NDIS) provides Australians aged under 65 who have a permanent and significant disability with funding for support and services. The NDIS may be able to help a person whose everyday activities have been impacted by a brain tumour. For more information, talk with your rehabilitation team,
call 1800 800 110 or visit ndis.gov.au.

If your GP refers you to a rehabilitation specialist as part of a GP Management Plan or Team Care Arrangement, you may be eligible for a Medicare rebate for up to five visits each year.

A range of therapies can support you in your recovery. These may be available at your cancer treatment centre, or through a rehabilitation specialist at a rehabilitation hospital. You may also be referred to individual allied health professionals (e.g. physiotherapist, occupational therapist) in private practice. Ask to see a therapist experienced in working with people after treatment for brain or spinal cord tumours.

Physiotherapy

Your physical abilities may be affected. Physiotherapy can help you learn how to move more easily, develop muscle strength and improve balance.

Moving and strengthening your muscles can reduce tiredness or weakness related to treatment. If you can’t move easily, you may be able to learn techniques, such as using a walking stick, so you can become more independent.

A neurophysiotherapist specialises in treating physical changes caused by damage to the central nervous system.

Cognitive rehabilitation

Your memory, language skills, thinking, planning and problem-solving skills (executive function) may be affected.

A neuropsychologist, speech pathologist or occupational therapist can help improve these cognitive skills using memory activities, speech therapy, assistive technology such as diaries and reminder alerts, and word puzzles.

Exercise

A physiotherapist or an exercise physiologist can give you advice on how to increase physical activity and exercise safely to improve circulation and mobility, reduce swelling, and increase your heart and lung fitness. They will also help you explore ways to return to activities you previously enjoyed.

To find a physiotherapist, visit choose.physio/find-a-physio and to find an accredited exercise physiologist, visit essa.org.au/find-aep.

Speech therapy

Your ability to talk may be affected. A speech pathologist could help restore speech.

Speech pathologists also work with people who have difficulty swallowing food and drink (dysphagia).

To find a certified practising speech pathologist, visit speechpathologyaustralia.com.au.

Help with vision impairment

You may lose some or all of your sight as a result of a brain tumour or surgery.

Vision Australia can help people learn how to live independently. Call 1300 84 74 66 or visit visionaustralia.org.

Occupational therapy

If treatment has made it harder to perform everyday personal activities (e.g. showering, dressing, preparing a meal), an occupational therapist can help. A range of strategies and aids can help you manage fatigue and improve or maintain your independence.

To find an occupational therapist working in private practice, visit otaus.com.au/find-an-ot.

A brain tumour or its treatment can sometimes cause seizures (also called fits or convulsions). A seizure is a disruption to the normal patterns of electrical impulses in the brain. Seizures can be divided into two main groups:

Generalised seizures – These occur when the whole brain is affected, and typically involve the whole body. The most common type is called a tonic-clonic seizure (previously known as a grand mal seizure).

A seizure often starts with a loss of consciousness. The person’s muscles may stiffen, their limbs may jerk rhythmically, and their breathing may be shallow for up to two minutes. They may bite their tongue, and lose bladder and bowel control.

Focal seizures – Also called partial seizures, these occur when one area (lobe) of the brain is affected. Focal seizures affect one part of the body, such as an arm or leg.

Symptoms of focal seizures depend on the area of the brain involved. They may include twitching; jerking; tingling or numbness; loss of speech; and altered sensations, such as changed vision or hearing, strange tastes or smells, or a feeling of deja vu. Focal seizures may also cause a brief loss of consciousness, changes in mood, and memory loss just before, during and after the seizure.

Ways to prevent seizures

Seizures can often be prevented with anticonvulsant medicines (also called anti-epileptic or anti-seizure medicines). Fatigue, or feeling very tired, can also increase your risk of having a seizure. Try to get enough sleep. Limiting alcohol may also help.

Ways to help someone having a seizure

  • Remain calm and stay with the person while they are having a seizure. Refer to their Seizure Management Plan, if they have one.
  • Do not hold them down or put anything in their mouth.
  • Protect the person from injury (e.g. move hazards, lower them to the floor if possible, loosen clothing, cushion their head and shoulders).
  • Call Triple Zero (000) for an ambulance if it is the first seizure the person has had; if the person is injured; if there was food or fluid in the person’s mouth; if the seizure lasts longer than five minutes; or if you are unsure of what to do.
  • Time how long the seizure lasts so you can tell the paramedics.
  • After the jerking stops, roll the person onto their side to keep their airway clear. This is particularly important if the person has vomited, is unconscious or has food or fluid in their mouth.
  • Watch the person until they have recovered, or the ambulance arrives.
  • If the seizure occurs while the person is in a wheelchair or car, support their head and leave them safely strapped in their seat until the seizure is over. Afterwards, remove the person from their seat, if possible. Roll them onto their side if there is food, fluid or vomit in their mouth.
  • Explain to the person what has occurred. In many cases, people are confused after a seizure.
  • Allow the person to rest afterwards as most seizures are exhausting.
  • For detailed information and an online tool for creating a Seizure Management Plan, contact Epilepsy Action Australia on 1300 37 45 37 or visit epilepsy.org.au.

Different types of anticonvulsant drugs are used to prevent seizures. You may need to have blood tests while you are taking anticonvulsants. This is to check whether the dose is working and how your liver is coping with the medicine.

Side effects of anticonvulsant drugs vary, but they may include tiredness, gum problems, shakes (tremors), nausea, vomiting, weight changes,  depression, irritability and aggression.

If you are allergic to the medicine, you may get a rash. Tell your treatment team if you have any skin changes or other side effects. Your doctor can adjust the dose or try another anticonvulsant. Do not stop taking the medicine or change the dose without your doctor’s advice.

If you are taking anticonvulsants, you may need to avoid eating particular foods. Check with your doctor before taking any herbal medicines, as these can change the way some anticonvulsants work. Talk to your doctor or pharmacist about potential interactions and foods to avoid.

Tumours, seizures, brain surgery and medicines (such as anticonvulsants and some pain medicines) can affect the skills needed to drive safely. These skills include:

  • good vision and perception
  • ability to concentrate and plan
  • ability to remember directions
  • good hand–eye coordination
  • planning and problem solving.

If you are diagnosed with any type of brain tumour, it is very important to ask your doctor how your condition or treatment will affect your ability to drive.

When you are first diagnosed with a brain tumour, your doctor will probably advise you not to drive for a period of time. You probably won’t be able to drive for some time after surgery and possibly after radiation therapy.

If you have had seizures, you will need to be seizure-free for a period of time before you are allowed to drive. If you stop taking your anticonvulsant medicines, you will also need to be seizure-free for a period of time until you are allowed to drive.

Before you start driving again, always check with your doctor. Laws in Australia require drivers to let their driver licensing authority know about any permanent or long-term illness or injury that is likely to affect their ability to drive.

Your doctor can tell you if you should report your condition or if there are any temporary restrictions. The licensing authority may ask for information from your doctor to decide if you are medically fit to drive.

How to return to driving

  • Have a driving assessment to check your ability to return to driving. This may include doing an off-road assessment or having an electroencephalogram (EEG) to assess seizure risk.
  • See an occupational therapist driving assessor, a neurologist or rehabilitation specialist to work out the type of problems you may be experiencing while driving (e.g. a slow reaction time). The focus of the assessment is not to suspend or cancel your licence: it is to work out if it is possible for you to safely return to driving.
  • An occupational therapist may be able to teach you driving techniques to help with weaknesses or show you how to make changes to your car (such as extra mirrors). You may also be able to drive with restrictions, such as only in daylight, only in automatic cars or only short distances from home.
  • Some people feel upset or frustrated if they have licence restrictions or can no longer drive. You may feel that you have lost your independence or be worried about the impact on your family. It may help to talk to a counsellor or someone who has been through a similar experience. Depending on your situation and your health, it may be possible to return to driving later on.
  • Follow any licence restrictions. If your doctor has said you are not safe to drive, you must not drive unless they change that medical decision. If you ignore the restrictions, your licence may be suspended or cancelled. You may be fined if you drive while your licence has been suspended or cancelled. If you have an accident while driving, you could be charged with a criminal offence and your insurance policy will no longer be valid.
  • For more information, talk to your doctor or visit Austroads.

It can be hard to predict how well you will recover from treatment for a brain tumour, and when and whether you will be able to return to work. This may also depend on the type of work you do.

Some people find it hard to concentrate or make decisions after they have treatment for a brain tumour. At least at first, it may not be safe to operate heavy machinery or take on a lot of responsibility. An occupational therapist can advise you about whether returning to work is safe or possible. They can also give your employer information about whether you could return to work with altered duties or on a part-time basis.

Talk to your employer about adjusting your duties or working part-time until you have recovered. In some cases, it won’t be possible to return to your former role. This can be hard to accept, and it may help to talk to the hospital social worker, call Cancer Council 13 11 20 or join a brain tumour support group.

Download our booklet ‘Cancer, Work & You’

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This information is reviewed by

This information was last reviewed in May 2022 by the following expert content reviewers: A/Prof Lindy Jeffree, Neurosurgeon, Royal Brisbane and Women’s Hospital, QLD; Emma Daly, Neuro-oncology Clinical Nurse Consultant, Cabrini Health, VIC; A/Prof Andrew Davidson, Neurosurgeon, Victorian Gamma Knife Service, Peter MacCallum Cancer Centre and Department of Neurosurgery, Royal Melbourne Hospital, VIC; Beth Doggett, Consumer; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Melissa Harrison, Allied Health Manager and Senior Neurological Physiotherapist, Advance Rehab Centre, NSW; A/Prof Rosemary Harrup, Director, Cancer and Blood Services, Royal Hobart Hospital, TAS; A/Prof Eng-Siew Koh, Radiation Oncologist, Liverpool Cancer Therapy Centre, Liverpool Hospital and University of New South Wales, NSW; Andy Stokes,