1. No two surgeries or the after effects are the same.
Surgery on the brain can vary dramatically, one person with a very similar tumour position and very similar surgery can have a very different outcome to another person even with the same type of tumour and surgery. One can have very limited side effects and return to work after just a few weeks and the other be unable to walk, have numbness or pain and need disability support. It doesn’t seem to only depend on other circumstances such as age or health (which obviously matter) but also the ‘unknown’ of the brain.
There is a large element of having to let go of the result and trust.
2. You will have a brain injury.
No one has ever said this to me. But realistically both the tumour and surgery cause brain injury!
Acknowledging it would be helpful.
3. There are some very commons side effects.
Fatigue, dizzy spells, poor balance, lack of coordination, nausea, cognitive and personality changes, strange head pains, a partially numb head, neck tightness and brain fog.
I have previously written about my 'Cerebellum Surgery Side Effects' here and the general 'After Effects of my Brain Surgery' here.
With my posterior fossa craniotomy, they also cut my greater occipital nerve on the same side - being told I would have a numb head after would have been super helpful to know beforehand!
Saying about how hard the bad days are, when you just feel so bloody useless...
Thankfully seizures are rare with cerebellum tumours and the external drainage tube inserted often during surgery is the main risk factor.
Maybe it would not be beneficial to the patient to be told these side effects before surgery, but certainly a booklet giving them the information when they are discharged from hospital would have been very helpful.
4. ‘Back to Normal’ will probably not be your previous normal.
You will be discharged from hospital to 'get on with it', yet the life you had and are sent to 'get on with' isn't now the same...
You will be alive, the tumour (hopefully) removed and (hopefully) without major issues (although I know they cannot and did not promise that) and may not need frequent medication or follow up, so they say you are ‘back to normal’. But you are almost definitely not going to be the same as before.
See my various posts on Craniotomy Side Effects.
Even supposedly minor side effects take a while to get used to, and so many at once with a slow working brain can feel overwhelming at times. Gratitude for what you do still have helps.
5. Alternative therapies can help.
I have a list of what I did after my surgery is on my website JoBarlow.co.uk/resources
Each of the products I used or therapists I have listed, I believe helped me heal. It seemed the more I used the faster, and better, the results. Not having the money to continue definitely slowed progress as I feel I improve more again when I am able to afford and look after myself again more with the various things that have previously helped.
I have also read in a few places that being gluten and dairy free, or following a ketogenic diet has helped others.
Do look at what you feel is best for ‘you’… but in general eating junk food and consuming loads of sugar isn’t going to help healing!
6. Get support.
Use any physical, occupational or speech therapists offered, or ask if you think they can help.
Personally I only needed neuro-physiotherapy and I feel the exercises given really helped with my balance recovery. Although I am currently pursuing neuro-ophthalmology as I am still struggling with my vision and think whilst my eyes can basically see normally and are ok in tests, they are not working together smoothly.
Also seek support both from and for caregivers. I have listed the support from many of the UK brain Tumour charities on my support page. I wish I had been given this list when I left hospital – when I left with absolutely no information what-so-ever!
7. Fatigue is common
In the first few days when I came home after surgery, I had to muster the energy to even walk to the toilet. I couldn’t carry anything remotely heavy - even my light handbag was too much and I HAD to sleep at least twice each day, and when I slept at night - I crashed out! After a few weeks I could do jobs such as hanging the washing on the line, but still had to get someone to carry the washing basket outside, and when I did so I felt shattered after.
Once the pain of surgery scars had gone, I slept so much at night. I could easily sleep for 12 hours and still nap in the day.
My brain was fixing itself, and it does that best when it is asleep.
It took me about 3 months to even manage to take the dog for a short walk again and almost 3 years later I still can struggle with:
Over-sleeping, feeling exhausted after small tasks, low energy, aching after doing tasks or exercise, trouble concentrating for too long.
When I do too much I tend to: say the wrong things, cannot find words, am delicate and sensitive to too much stimulation (lights, noise) and just feel overwhelmed.
The hardest part is that I can’t predict it as fatigue doesn’t always appear directly after a stressful or tiring time and often instead a few days, or even a week later, I struggle.
But even since the 2 years after surgery (when many say you no longer continue to heal or improve) it HAS got better.
There is a great pdf on about fatigue from The Brain Tumour Charity here.
8. You may find the emotional healing as hard as the physical
Knowing that if you didn’t have surgery you would be dead brings up some very strong emotions at times!
You know that you are not the same normal as you were before, yet you are alive and are grateful.
You also understand that your tumour has a FAR better prognosis that most brain tumours, you know you are lucky.
Yet you still had a BRAIN TUMOUR!
And you still find the changes hard at times, the fatigue and mental exhaustion making it more emotional.
The fact that something so major happened, the recall of the struggles around the time of surgery, the fear, the not knowing if I would be disabled after surgery, or even alive! Would my kids manage without me?
Also the thoughts that it could return, are the follow up scans ok? Knowing the risk will always be there …
9. It will be much easier to over stimulate your brain
Over stimulation will always be easier to do than before your brain surgery. Your brain’s tolerance for stimulation is much lower than a brain that is not injured.
Sometimes just being in a room with others talking, listening to the washing machine spinning or the sun flickering between the trees will be too much, other days you can listen to music loudly just fine and manage flashing lights no problem.
It can also be too much TV or computer screens, or just places with people talking or traffic driving past that can affect you. Any outside input is stimulation.
It will depend on lots of factors including how fatigued you are and how much ‘stress’ you have had to deal with, but over time it should gradually get better.
If you had broken your leg you would allow for it to gradually heal, and maybe always have a limp or some pain… your brain was broken into, and it may take a long time to heal.
Be kind to yourself.
10. You will have an invisible injury
You may have a scar on your head, but once your hair covers it no one seems to realise anything. (If you have long hair and the surgeons just cut the hair closely round the scar, no one will notice from about the time the staples are removed!)
We know what we went through and that we are still healing. But this is mostly invisible to others, and people will judge you not knowing what you have been through.
They won’t know why you wobble at times, say the wrong words or can’t even think of them, and they will have no idea how you are feeling emotionally. People will judge without knowing your story, and it can be hard to deal with at times.
You often wish you could have a badge saying:
But the reality is that unless they have been there, or been close to someone who has, they cannot possibly know.