This information has been reviewed by:
Dr Kate Drummond, Neurosurgeon, Royal Melbourne Hospital
Dr Peter New, Head, Spinal Rehabilitation Unit, Caulfield General Medical Centre and lecturer, Monash University Departments of Medicine and Epidemiology and Preventative Medicine
Behaviour and personality changes
Coping with a spinal cord tumour
Brain tumours can affect some of the normal functions of the brain, such as speech, movement, balance or memory. If you have problems in these areas, you may need the help and advice of other members of the health care team. This could include the speech pathologist, physiotherapist and occupational therapist. This can start in hospital. People who need help for some time can continue their therapy as outpatients. You may be referred to a rehabilitation centre.
Problems with speech can include difficulties in finding the right words, using sentences properly, or difficulties in keeping your speech under control. Your speech pathologist can help you to understand the problem. They can give you and your family some ideas and help on how best to communicate. Some brain tumours cause problems with swallowing. Your speech pathologist can also help with these.
Your physiotherapist can help you to overcome or manage problems with movement, balance or coordination. The occupational therapist can help you to cope with the ordinary tasks involved in everyday living.
Below, we discuss some changes and approaches that you may like to try. Please also refer to our ‘Seeking support' section for details of support groups, helplines and other assistance.
A brain tumour can cause changes in behaviour and personality. These vary greatly from person to person, and depend on the area of the brain affected by the tumour.
Changes may include:
Try to reduce demands and expectations if you're feeling frustrated. Set goals you can achieve, and allow enough time for tasks to be finished.
Other coping strategies could include:As discussed above, your ability to communicate may change. This depends on which parts of your brain the tumour affects. When speaking and writing, you may have trouble finding the right words. Or you may have trouble forming a sentence. Reading may become difficult, especially longer sentences. You may have trouble remembering details as you read a long story.
These problems can be caused by tiredness due to sleeplessness or treatment. Poor concentration and memory and visual problems may also contribute.
Here are some coping strategies to try:
You may find you are more dependent on others. If people offer to help, accept their offers. This will help them to feel useful while being useful for you as well. Discuss your feelings with your close family so you are each aware of each others' needs.
Changes in physical appearance, self image, energy levels, emotional states and other side effects from treatment could affect your sex drive and sexual function. Discuss your concerns with your partner. Allow yourself time to gradually confront and adjust to your body changes.
If your brain tumour means that you can't keep working, contact Centrelink to find out how to apply for financial assistance. A social worker may also help you to work out managing your financial affairs.
It may be unsafe for you to drive a car. Diagnosis and treatments may increase your reaction time. They may also affect your ability to manage busy/noisy traffic and position the car correctly on the road. They can cause sight problems, as well. If you have had epilepsy or seizures, you usually cannot drive for many months or years.
Ask your doctor if it is safe for you to drive. You may be in danger of injuring yourself or other people. If you have an accident while driving after being told not to drive, you may not be insured. Although you may not want to at the time, asking relatives/friends to drive you places will make them feel useful as well as help you. When you are allowed to drive again, contact the Driver Assessment Centre at VicRoads for assessment under controlled conditions. This may also help to regain your confidence on the road.
Seeking assistance from a social worker, counsellor or support group members may also help you cope with these changes.
Having a brain tumour may change your emotions. You may at one time or another feel fearful, have anxiety or panic attacks, become angry or aggressive. You may become confused, feel isolated or detached from others, feel frustrated or impatient, become sad, depressed or ‘flat', or become moody. You might also have difficulty showing or controlling emotions.
Here are some ways to cope:
Remember, one day you may feel better and the next day feel upset again. Not everyone shows their emotions, nor does everyone experience the same feelings.
Spinal cord tumours can affect some of the normal functions of the body, such as movement, sensation including pain perception, and control of bladder and bowel. If you have problems in these areas, you may need the help and advice of other members of the health care team, including rehabilitation medicine physician, physiotherapist, occupational therapist and specialist nursing staff. This can start in hospital and people who need help for a longer period can continue their therapy as an outpatients. You may benefit from referral to a specialist rehabilitation centre to help deal with problems.
Your physiotherapist can help you to overcome or manage problems with movement or balance. You may be unable to walk, and even have difficulty moving yourself in bed. The physiotherapist can help teach you ways to try and regain the ability to move around and achieve the best physical mobil-ity possible. This may include teaching ways to turn yourself in bed, transfer from a bed to a wheelchair, and use a wheel-chair. If you have adequate strength, ther-apy will also help you regain walking, with or without a gait aid.
The occupational therapist can help you cope with the ordinary tasks involved in everyday living, such as washing and dress-ing. Modified techniques and special equip-ment can help you manage with these tasks. Sometimes, specialised equipment is needed to help you achieve the best possible level of independence.
Loss of control of bladder and bowel functioning can be one of the problems that occur after damage to the spinal cord. This can be very distressing. The staff under-stand that this loss of control is not intentional. It is not possible to reverse the damage to the spinal cord that has caused the loss of control of bladder or bowel. It may be possible, however, to use strategies to deal with the disruption. If the bladder control is severely disrupted it may be necessary for you to have a catheter inserted into the bladder. This is a thin plastic tube which allows the urine to drain into a bag so that the bladder does not get damaged by being overfilled, and this also will stop bladder accidents. It may be possible, with recovery, to have the catheter removed and the bladder emptying monitored so that you could eventually manage without a catheter in the longer term.
Disruption of bowel control can be more challenging to deal with. It may be necessary to use tablets to help improve regu-larity of bowel action. Suppositories, which are special tablets inserted into the anus, may also be necessary to help stimulate the triggering of a bowel action. This, together with good fluid intake and a healthy diet can help train the bowels to open regularly without accidents in between times. This bowel routine can take several weeks, or even longer, to establish, and may require you to be in a specialist inpatient rehabilitation program.
The Cancer Council Helpline can help you with a whole range of issues, including putting you in touch with a cancer support group or other support service if you wish.
For specific information about your tumour and side effects, consult your doctor.
