A brain tumour and its treatment may cause side effects. Rehabilitation is the process of recovering or adjusting to these changes, to enable you to do the things you want to.
A brain tumour and its treatment can sometimes cause side effects, which can have a short term or long term impact on your quality of life and ability to do the things you used to.
Rehabilitation is the process of recovering or adjusting to these changes, achieving your full potential and living as full and active a life as possible. Rehabilitation can help you to get back to the things you want to do and improve your quality of life.
Brain tumour rehabilitation involves specific exercises or activities. Repeating these over time can help your brain re-learn or prompt another area of your brain to take over some of the functions that were damaged by your brain tumour or treatment. Rehabilitation can also involve learning ways to adjust to life with these side effects. However, it’s important to know that you may not get completely back to how you were before your brain tumour.
Be gentle with yourself. Recovery takes time.
Member of the brain tumour community
You may have rehabilitation at various times, such as before surgery, after surgery, during treatment or when experiencing a change in your symptoms. This can take place in your own home, hospital, a rehabilitation unit or an outpatients clinic.
The type of brain tumour rehabilitation that is right for you will depend on your specific needs. As an example, this may include speech and language therapy, occupational therapy and psychological support. More detail on the symptoms and how rehabilitation can help is shown below.
You may require a combination of these and other treatments. Working closely with your medical team is key to determine what type of rehabilitation is needed for your situation.
It is important to remember that improvement from treatment can be a slow and gradual process. Every brain tumour rehabilitation journey will be different depending on the person and situation. The timeline for progress can vary greatly – everyone is unique.
“I have learned that neuro rehabilitation is a commitment; it requires courage, belief, determination, and hard work from the person affected, both within therapy sessions and in the time in-between.”
Anya Jones, diagnosed with an acoustic neuroma in 2017.
Anya’s surgery to remove the tumour was a success, but unexpected swelling of her brain caused her to suffer many unusual complications. Anya, who works in consultancy, required over 18 months of rehabilitation and recovery, including speech and language therapy, to help regain swallow function and vocal strength; and neuro physiotherapy, to improve her balance and mobility. This is her story of how she coped.
When Anya received her brain tumour diagnosis, she was in shock. Brain surgery was a huge hurdle to overcome. But nothing could have prepared her for the rehabilitation challenge that followed.
“My life came to a standstill on the day the news of my tumour was delivered, but it shattered into pieces the day I had my tumour treated. Months of rebuilding a life from those pieces followed, having to reassess everything I had built over tAnya’s daughter Lyla was only 4 when she was diagnosed, and she was the key reason that Anya found the strength to spend day upon day in rehab.
“I needed to retrain my brain to recover my balance so I could be safe to look after her unsupervised, learn to walk again to be able to take her to school, work towards speaking clearly to be able to read her bedtime stories, and undertake physiotherapy day after day to retrain my face to work properly so I could smile at her again. I was undeniably driven by the hope that I could regain a life of my own, but stronger still was the desire to be able to be the mother I wanted to be for my daughter again”Anya’s rehabilitation was multi-focused. The different therapies she underwent included:
Neuro physiotherapy – to regain balance and mobility. Anya had to relearn how to sit up straight, then to walk with support. She was able to walk unsupported after 18 months, which allowed her to return to her job in London.
Occupational Therapy – to regain full usage of her upper limbs and improve a left-sided weakness and co-ordination challenges
Specialist vestibular therapy – helped retrain her brain to manage balance issues
Facial Physiotherapy – to improve on facial function after facial paralysis
Neuropsychology – an ongoing part of her rehabilitation. From assessing her cognitive function and ability to navigate her environment after surgery, to challenging executive function, memory, and processing capabilities when she returned to work 2.5 years later.
“My recovery would not have been achievable without the expertise and guidance of a team of health professionals, and I am deeply grateful for all their support. “I have worked hard to not only rebuild my life but to accept the changes in me. Over the course of two and a half years I managed to adjust my focus away from just being about the next rehab therapy to making a successful return to work. It was incredible to finally feel that I had rebuilt an independent life but there have been consequences. I felt an overwhelming grief from knowing I was not the same anymore, a sense of shame in being different and thought I was lesser than I once was. But when I focused on what I had achieved, how far I had come since surgery, I instead felt proud for being strong and all my imperfections became a part of that. Anyone who is unfortunate enough to experience a brain tumour of any kind is inevitably changed by it – the emotional and mental challenges are just as important as the physical ones.“In sharing my experience, I hope I will help raise awareness of the potential that rehabilitation has and provide some inspiration and motivation to others. I saw a quote on the London Underground in the week before my brain surgery that resonated strongly with me – “A champion is simply someone who didn’t give up when they wanted to” (Tom Landry, Dallas Cowboys Coach). I’ve read that quote many times during rehab, because there were so many days I did want to give up. Looking back now, over five years later, I can acknowledge that I didn’t give up and I’m still moving forwards despite the challenges that I navigate and manage each day, and I am proud of that.“5 years on I am now fully independent, I work full time again and have a good level of mobility. I even managed to return to skiing, one the my biggest passions in life last year! I ensure I do regular strength and stability training each week to keep myself protected from the risk of falls as my balance won’t ever fully recover. There are only a few aspects of my life that I haven’t been able to return to. I feel immensely fortunate to have regained so much of what I love, and I have learned to let go of what no longer works for me.”“The best advice I can give anyone embarking on a rehabilitation journey is to have faith in incremental changes. It may take time and feel like change isn’t happening quickly enough, but the small steps you take every time you repeat your rehab exercises are all adding up to progress.“And repetition, repetition, repetition – whatever type of therapy it is, keep doing the work. But pace yourself, be kind and accept there will be days you are tired as this is very challenging for your brain, or days you feel unmotivated – you wouldn’t be human if there weren’t. “Connect with people or activities that help you refocus and feel positive – for me this ranged from feeling love and support, laughing with friends, learning about others stories with shared experience and finding inspiration – do whatever works for you.”
Which brain tumour side effects can rehabilitation help to manage?
A brain tumour can affect you in different ways depending on where in the brain your tumour is located and what treatment you have had. Some side effects can be temporary but if your brain becomes damaged these may last longer. Your medical team can discuss with you whether rehabilitation can help with the symptoms you are experiencing.
Some of the symptoms that rehabilitation can help with are:
These are your body movements and your physical ability to carry out your daily tasks. Symptoms may include:
Which healthcare professionals can help me with brain tumour rehabilitation?
There are various healthcare professionals who can help you manage your symptoms from a brain tumour. They will form part of your Multi-Disciplinary Team (MDT) and as a group are sometimes referred to as Allied Health Professionals (AHPs).
These include:
A Physiotherapist can help you with your movements, strength, walking and balance.
They may do this by:
Teaching you and helping you to complete specific exercises to help your movements
Creating and issuing you an exercise programme to carry out independently
Carrying out walking and movement re-education
Providing balance rehabilitation
Assessing and supplying mobility aids
Advising you on how your physical problems affect your daily life and how to manage them
Use it or lose it! It might be harder to complete a movement but with practice and effort it will likely become easier over time
An OT can help you to become more independent with your daily activities such as washing/dressing, domestic tasks, work and hobbies.
They can help you by:
Practicing your daily activities with you and teaching you the best technique
Teaching and helping you with arm exercises to improve how you use it for tasks
Carrying out cognitive rehabilitation using exercises or teaching you strategies
Providing and advising on aids or assistive equipment
Supporting you with how to manage fatigue
Advising you on the effects of your symptoms on your daily life and how to manage them
Try and get back to the things you enjoy, even if you have to do them differently.
Top tip from an occupational therapist
An SLT can help you with your communication and swallowing.
They do this by:
Carrying out communication rehabilitation using strategies, exercises and education
Providing swallowing rehabilitation
Making recommendations for the safest types of food/drink and alternative methods of feeding
If you are having trouble with your communication, practice speaking by yourself or in front of family/friends you trust.
Sophie Whitehead, Specialist Palliative Care Speech and Language Therapist
A Neuropsychologist completes testing to evaluate and interpret the effect of your brain tumour on how your brain and mind are working. They help you deal with the cognitive and behavioural changes caused by the damage to your brain and help you gain a deeper understanding of your condition. They do this by:
Carrying out cognitive testing and reporting back to you and your healthcare team
Suggesting treatment plans for cognitive rehabilitation and psychological therapy
Educating you on the effects of your condition on your brain and thinking
A dietitian specialises in nutrition and its effect on the body. If you experience difficulties with eating, drinking, or with weight loss or gain, a dietitian can support you to make informed decisions about your dietary intake and work through these difficulties to help you meet your nutritional needs. Getting the right nutrition can help with physical rehabilitation and muscle strength, wound healing, boost your immune system, increase energy levels, improve your mood and support you in returning to your usual activities.
A dietitian can support you by:
Helping you to create dietary plans to suit your individual needs
Providing nutritional education
Providing education and advising on alternative methods of feeding such as nasogastric feeding or gastrostomy feeding.
Food is fuel for the body. While nutrition plays a vital role for our everyday activities and functioning; it is important to still enjoy our food. Ensure regular meals and snacks and aim for a variety where you can.
How can I get help with brain tumour rehabilitation?
The need for rehabilitation with a brain tumour will be different for everyone and will depend on your specific symptoms. You should first talk with your medical team such as your consultant, surgeon or clinical nurse specialist (CNS) about whether this could benefit you and help with the symptoms you are experiencing. They can help you to access the services and departments you need by making referrals. You can also ask your GP to refer you to local community and specialist services. Some hospices may have rehabilitation professionals who can provide this service if you have a palliative diagnosis.
Having someone else with you when speaking to your medical team or other healthcare professionals can be very helpful. They can assist you in keeping notes, understanding advice given and advocating for you if needed.
It’s important to note that brain tumour rehabilitation (neurorehabilitation) services vary across the UK both in terms of availability and the waiting times to access services. Speak to your GP and/or consultant about the services in your area.
Some people choose to access private rehabilitation services (which you have to pay for). This is because:
NHS waiting lists can be long and delay timely access to treatment.
There may be a rehabilitation treatment that they want to access which is not available in the NHS.
They want to supplement NHS treatment to increase the amount of rehabilitation they receive. You should be able to get both private and NHS treatment at the same time but usually delivered by different healthcare professionals and in a different setting.
They may want to be treated in a specific setting or seen by a specific therapist.
If you choose to access this privately, talk to your GP and research services in your area. If you can, contact a few private therapists or hospitals near to you to compare the services they offer and the costs involved. Make sure that the therapist or specialist you use is registered with the professional body that regulates their area of work. If you have private health insurance or employer health and wellbeing benefits this can also be a good place to research as they may offer access to rehabilitation services. The organisation Headway may also be able to talk to you about local care providers. Additionally local cancer charities may offer rehabilitation services or signpost you to providers.
Ask your GP or medical team about whether rehabilitation could be helpful for you
Ask for a referral to a specialist (e.g. physiotherapist, occupational therapist)
Request a care needs assessment from your local authority
Contact Headway to find out about local care providers and support
Keep your brain active through puzzles, reading or games which use your problem-solving skills.
Set yourself realistic goals, document your progress and celebrate all of the small gains you achieve.
Try and incorporate your rehab into your daily routine – set alarms, schedule it into your diary or tie it in with a habit you have already.
Think about ways in which you can incorporate your rehabilitation exercises into day-to-day activities.
Try and maintain a healthy lifestyle. This includes eating a balanced diet, staying hydrated, and getting regular exercise within the limits of what your medical team recommends.
Look after your mental health. Rehabilitation can be stressful, so it is important to take care of your emotional well-being.
Get plenty of rest to help with your rehabilitation and recovery
Be kind to yourself – fatigue is a natural response to your situation, so it doesn’t mean you are failing or not trying hard enough.
Would rehabilitation be beneficial for me?
Can you refer me to a rehabilitation professional?
Should I have a rehabilitation assessment as part of my treatment plan?
What are the right goals for me in my rehabilitation? What will we be focusing on?
Are there any risks involved with rehabilitation treatment?
Is there work I can do in between sessions with my health professional?
Do you have any details of exercises, visuals or videos I can use?
Are there ways for my carers, loved ones or friends to support me in my rehabilitation?
What else can I do to manage and improve my symptoms?
Access to rehabilitation services can vary. If you are unable to access rehabilitation services or waiting for this to start, you should ask your medical team about ways to improve and adjust to any symptoms you are experiencing.
You can also ask your local council about a needs assessment to determine if any extra care or equipment could help you.
Headway also have further information on coping with the effects of brain injury in their information library.
While we cannot recommend individual apps, our community have suggested these may be helpful. Always check with your medical team before starting a programme.
Get on with it. Even when you’re tired. Even when the world seems too big. Get up. Fight. You got this ♥️
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Baby steps. A little bit each day and if you can’t every day it’s not the end of the world. Set a goal – it helps. Mine is to get back on my horses. Managed it last week. It wasn’t pretty but I did it. And don’t let people tell you that you can’t do something. There’s a way round everything!
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Be positive. Rest when your body tells you to. Be kind to yourself and others. Remove negative people from your life. Enjoy life and do what you feel is right for you. Listen to your medical team. Listen to music and dance – it soothes the soul.
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Coming to terms with the fact that the new you might be a very different person than the old you – but it’s still you.
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Be gentle with yourself. Recovery takes time.
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Rest, accept recovery may be slower than you anticipated. When able, do seated exercises to build strength. Get a team of support ready post op. Drink plenty of water. Be kind to yourself. Think positive thoughts.
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Have patience. It sometimes gets worse before it gets better.
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Repetition, Repetition, Repetition!
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If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
