Brain Tumour Rehabilitation at Home: A Family Guide to Recovery After Surgery and Treatment

A brain tumour is an abnormal growth of cells inside the skull. Some tumours begin in the brain or its coverings (primary tumours, such as gliomas and meningiomas), and others spread to the brain from elsewhere in the body (secondary tumours, or metastases). Some are slow growing and may be removed completely, and others are more aggressive and need combined treatment. The type, grade and location are explained by the neurosurgeon and oncologist, and they decide the plan, which may include surgery, radiotherapy, chemotherapy or targeted treatment.

Rehabilitation does not treat the tumour. Its role is to help the person move, walk, care for themselves and take part in family life as much as possible, and to protect against the secondary problems that follow long periods of bed rest, such as muscle loss, stiff joints, chest infections and pressure sores. Studies of rehabilitation in people with brain tumours have generally shown meaningful functional gains, comparable to those seen after other types of brain injury, although each person’s course is different.

It also helps to remember that the needs of the person change with the stage of illness, and rehabilitation changes with them: sometimes the aim is to regain as much independence as possible, sometimes to stay stable during treatment, and sometimes to give comfort and support to the family. The team should always agree the goals with the patient and the family, and with the treating doctors.

The brain is organised by area, so the effects of a tumour, and of the surgery that removes it, depend mostly on where it was.

• Motor areas: weakness or clumsiness on the opposite side of the body, similar to a stroke.
• Sensory areas: numbness, altered feeling or difficulty knowing where a limb is in space.
• Speech and language areas: difficulty finding words, understanding or speaking, most often when the left side of the brain is involved.
• Visual pathways: loss of part of the field of vision, which causes bumping into objects on one side.
• Cerebellum and brainstem: poor balance, a wide-based walk, tremor with movement, dizziness, double vision or swallowing difficulty.
• Frontal lobes: changes in planning, motivation, behaviour and personality, which families often find the hardest to understand.
• Pituitary and skull-base region: hormonal and vision problems.

Weakness that appears soon after surgery can be partly due to temporary swelling and often improves over weeks, but some changes may persist. The physiotherapist reads the surgeon’s report to understand what area was involved, and builds the plan on what the person can and cannot yet do.

Because treatment unfolds over months, physiotherapy is adjusted at each stage. The table shows a general outline, and the surgeon and oncologist decide what is safe for each person.

This is a guide and not a rule. For example, some people need rehabilitation in several short blocks, because side effects of treatment come and go.

After a craniotomy the surgeon will give instructions about the wound, activity and driving. Follow those first. In general, in the first weeks it is wise to avoid heavy lifting and straining, to keep the wound clean and dry, not to press or massage the scar area, and to get up gradually. Moving early is usually encouraged, because prolonged bed rest weakens muscles and raises the risk of clots and chest infection.

A home physiotherapist can help with:

• getting in and out of bed and a chair with the least effort and risk
• positioning in bed to protect a weak arm or leg
• breathing exercises and walking practice, increasing slowly
• simple exercises for the arms and legs that can be repeated through the day
• advice on stairs, the bathroom and the layout of the room, so that falls are less likely

Headaches, nausea, dizziness and tiredness are common early on, but if they are severe or worsening, report them. A fall in the first weeks is particularly dangerous, so fall prevention is a priority; see our guide on fall prevention for neurological patients.

Many people take dexamethasone or another steroid to reduce brain swelling. Steroids can be very helpful, but they can also weaken the large muscles of the hips and thighs (steroid myopathy), cause sleeplessness, mood swings and increased appetite, raise blood sugar, cause fluid retention and thin the skin and bones. If standing up from a chair becomes hard, mention it to the doctor, because it may be a side effect and not only the tumour.

Anti-seizure medicines may cause drowsiness, unsteadiness, double vision or slowed thinking. Radiotherapy causes fatigue, hair loss in the treated area and, in some people, skin irritation. Chemotherapy may reduce blood counts, causing tiredness, a higher risk of infection and a tendency to bruise or bleed. Because of these effects, the physiotherapist will ask about recent blood tests and about how the person feels that day, and will lighten or postpone a session if the blood counts are low, if there is a fever, or if the person is very unwell.

Never change or stop medicines on your own. Write down new symptoms and bring them to the oncologist.

When a tumour or its treatment has caused weakness, the principles are similar to those of other brain injuries: repeated, task-focused practice of the movements that matter, at a level that is challenging but safe. That might be standing up from a chair, shifting weight, stepping, reaching, or walking short distances with a walker or stick. Balance training, including sitting and standing balance and safe stepping practice, is central, because falls cause serious harm in people who are also on steroids or have low platelet counts.

Equipment such as a walker, a shower chair, grab rails or an ankle support may be advised. Our guides on neurological gait retraining and on training gait after stroke describe approaches that are also used for other causes of weakness, although the plan for a person with a tumour must be adapted to their condition and to what their doctors allow.

If bone involvement or a spinal tumour has been mentioned by the doctor, ask what loads are allowed before any exercise is started.

Fatigue is one of the commonest and most disabling problems. It is a deep tiredness that is not fully relieved by rest and may be caused by the illness, treatment, anaemia, poor sleep, low mood, medicines or reduced activity. Radiotherapy-related fatigue often builds up during treatment and can last for weeks afterwards.

Helpful strategies include:

• planning the day around the person’s best time, and putting demanding tasks there
• short sessions of activity with planned rests, rather than one long effort
• keeping some light activity every day, because complete rest increases weakness
• sitting for tasks such as washing or dressing
• asking others to help with heavy jobs, and saying no to unnecessary demands
• sleeping at regular times and limiting long daytime naps

If tiredness suddenly increases, or comes with breathlessness, fever or pallor, tell the doctor, because it may point to anaemia, infection or another treatable problem. Our guide to managing fatigue while building walking endurance explains pacing in practical terms.

Many people notice problems with memory, attention, planning or slowed thinking, caused by the tumour, surgery, radiotherapy, medicines or tiredness. Practical aids help: a daily routine, a calendar or phone reminders, a notebook for appointments, a medicine organiser, and doing one thing at a time. Families can help by giving simple instructions, allowing extra time, and reducing noise and interruptions. Our guide on memory and thinking problems after stroke contains strategies that also help in this setting.

Low mood, anxiety and fear about the future are common and understandable. They deserve attention and treatment, not simply encouragement. If the person talks about not wanting to live, or if mood worsens quickly, tell the doctor promptly. Personality or behaviour changes, such as irritability, apathy or impulsive behaviour, may reflect the area of the brain affected and are not deliberate. A calm, consistent response and support from the treating team help.

People with brain tumours have a higher risk of blood clots in the leg veins, which can travel to the lungs. They may also have low blood counts after chemotherapy, and a wound that has been opened is at risk of infection.

• Leg clot signs: swelling, pain, warmth or redness in one calf or thigh. Do not massage the leg; contact the doctor the same day.
• Lung clot signs: sudden breathlessness, chest pain, coughing blood or a fast heartbeat. This is an emergency.
• Infection signs: fever, chills, a wound that is red, hot, leaking fluid or reopening, or a stiff neck with headache.
• Bleeding signs: nosebleeds that do not stop, black stools, blood in urine, or unusual bruising, particularly when platelets are low.

The physiotherapist will check these at each visit, but the family sees the person every day and is often the first to notice a change.

Seizures are common in brain tumours. During a seizure, do not restrain the person and do not put anything in the mouth. Move hard objects away, cushion the head, loosen tight clothing around the neck, and note the time. When the shaking stops, turn the person on their side and stay with them until they are fully awake. Call the ambulance if the seizure lasts more than five minutes, if one seizure follows another without recovery, if the person is injured or has trouble breathing afterwards, or if it is their first seizure.

During physiotherapy sessions the team keeps a chair or bed near, avoids exercising when the person is unusually drowsy, and stops if there are unusual feelings that may be a warning. Our guide on seizure safety during home rehabilitation gives more detail on precautions in the home.

Go to the emergency department or call the ambulance for:

• a seizure lasting more than five minutes, or a first seizure
• a sudden severe headache, especially with repeated vomiting
• new or rapidly worsening weakness, loss of speech, loss of vision or confusion
• increasing drowsiness or difficulty waking the person
• sudden chest pain or breathlessness
• fever with a stiff neck, or fluid or pus leaking from the surgical wound

Contact the oncologist or neurosurgeon within a day for headaches that are gradually worsening or worse in the morning, new nausea, a change in personality, new swelling in a leg, or increasing unsteadiness. If you are unsure whether something is urgent, call; most doctors prefer an early call.

If tests show that the illness is advancing, or the treating doctors recommend a focus on comfort, rehabilitation does not stop. It changes in aim. Physiotherapy can help to position the person safely and comfortably, protect the skin, ease stiffness and cramps, teach the family safe ways to turn and transfer, and support breathing and coughing. It can also help the person remain as active as they wish for as long as possible.

These are difficult conversations, and families should feel free to ask the doctors about what to expect and how to plan. Our team follows the plan agreed by the treating doctors and the family, and does not offer predictions or promise results.

Caring for a person with a brain tumour is demanding, physically and emotionally. Family members may need to learn new tasks quickly, deal with appointments and costs, and manage their own fear. It helps to share care among several people, to accept help with meals and errands, to learn safe lifting techniques to protect the back, and to keep some time for sleep and rest. Support groups, a trusted friend or a counsellor can help. If you feel overwhelmed, tell the doctor or nurse, because caregiver wellbeing matters for the patient too.

The Bedaya team provides physiotherapy at home in Cairo, Giza, Alexandria and other governorates for people recovering after neurological illness, including after tumour surgery when the doctors agree. Before the first visit, gather the surgeon’s operative and discharge report, the MRI report, the pathology report if available, the oncologist’s treatment plan, the list of medicines (especially steroids and anti-seizure medicines), recent blood test results, and the dates of radiotherapy or chemotherapy sessions.

At the first visit the physiotherapist will check movement, balance, walking, skin, swelling and tolerance of activity, and discuss goals with the family. The team does not diagnose, change treatment or replace oncology care, and will ask you to contact the doctors for anything concerning. You can learn more on our home visit booking page, and see how the first session usually goes in our guide to the first neuro physiotherapy home visit. For general principles after other brain injuries, see our page on traumatic brain injury rehabilitation.