Friday 19 April 2019

10 Things My Doctor Didn’t Tell Me about the After Effects of Extracting a Benign Cerebellar Brain Tumour

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 
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. 



  1. It is so good to hear someone else saying exactly how I feel. Different tumour, different area of the brain but you have put into words exactly how I feel. Thank you so much, the doctors, neurologists, neurosurgeons and so many friends and family do not understand. I am so fed up of being made to feel like I am over-exaggerating, that the way I feel cannot be due to the tumour or surgery, that I am wrong to feel like this. Dealing with the physical side of the surgery was the easy bit, living with the after effects and the constant worry of still having some tumour left is harder than anything else. I try to be positive and grateful but inside I am screaming everyday. You have just made me feel like a human again, not a fraud. Thank you xxx

    1. I am so glad it helped x
      I started writing down what I felt in order to help me understand myself, and to heal myself by expressing the feelings, as well as explain to my family.
      Knowing it is helping others or their families even a little bit makes is so much more worthwhile :) Thank you xx

  2. Love this site - very glad I am not alone in my reading list, therapy list and arnica 200 - I have a brainstem cavernoma near pons and cerebellum- May have brain surgery may not ��

    1. I am glad it helps you! :)
      If you do choose surgery- make sure you get 'permission' to use Arnica afterwards, as I was initially refused it -until i started screaming at a nurse... saying they cannot call it sugar pills and then ban me from using it... So they called the pharmacy and got permission! (i swear it worked almost as well as morphine- but without sending me scatty or to sleep :D )
      Have you also tried frankincense oil? it really helped with headaches and has been shown to shrink some types of tumour.
      Good luck with whatever you decide <3

  3. Hi Jo, I'm going in on Thursday for surgery. Would you recommend getting long hair cut short before this? Also you say if you "choose" surgery. Do I have a choice now my tumour has started to grow after 12 years of being stable? I'm so scared and have so little support. I hope I feel better after but now I'm wondering if I'm doing the right thing. I'm 58, is it worth the aggro afterwards or should I try to just live with it. Can I ask what size your tumour was when you went for surgery please. Thanks for any input. I need someone to talk to and have no one here.
    Bronwyn McAlpine. New Zealand.

    1. What i mean by 'choose surgery' is that it seems in many cases people have urgent surgery within hours or days after finding out about their tumour and no choice if they want to live. With choosing I mean you get a little bit more of a choice in when surgery happens, or in the case of smaller tumours when they 'watch and wait' and your opinion counts far more as to when you feel surgery is right for you.

      I really cannot advise you on if your tumour should be operated on or not, I can only suggest you seek another neurosurgeon's opinion if you are not sure, or ask your current neurosurgeon more questions. 'Often' early surgery on a smaller tumour does seem to have a better outcome in recovery at least, but it would depend on type of tumour and speed its growing.

      My tumour was a 3cm solid mass of blood vessels in my cerebellum. A Hemangioblastoma.

      Have you tried contacting a brain tumour support group? Many offer help when you need it, or can advise you who is in your area. A quick search shows

      I hope you find someone to support you and your surgery is successful xxx

  4. Thanks Jo, that's a big help finding those support groups. And what you said made sense. I feel like I'm being a big baby about it but I'm scared. Anyway thanks heaps.

    1. You wouldn't be human if you didn't feel scared x
      I hope things go well for you and you get the support you need. Wishing you a speedy recovery <3

  5. I just had brain surgery a couple of months ago, for a different type of tumour (a colloid cyst of the third ventricle, that was apparently quite large and already causing hydrocephalus). I don't know that I can give or take much support because the tumour and the symptoms were both different. A colloid cyst is 'benign' and not cancerous, which I guess makes treatment a lot simpler and removes one source of danger and hence worry, but it still can be fatal because of the hydrocephalus it causes.

    I would say I had (and still have) 'dizziness', but not to the extent of affecting my mobility, I don't fall over, the dizziness is worst during the night and soon after waking, and affects my ability to concentrate on tasks, and even to sleep, more than my ability to stay upright.

    What perhaps is similar is, apart from the fatigue, that I feel bereft of almost any information about either the condition I was treated for, or what to expect post-surgery. All I know is what I've found on the web since being discharged from hospital. The fact that this all happened in the middle of the COVID19 lockdown, where all non-emergency medical treatment has been suspended (even my doctor's surgery is closed, and the post-brain-surgery peer-support service appears to have stopped functioning) doesn't help.

    I would also say that in my case, it's not just other people, I myself genuinely don't know to what extent my symptoms are due to the tumour or the surgery. Distressingly, the post-operative symptoms are, so far, very much the same as the pre-operative ones, with a few added extras (e.g. I now have tinnitus which I didn't before). I even find myself wondering if the whole thing wasn't a bizarre coincidence, that the symptoms that led to the CT-scan and the discovery of the cyst and the hydrocephalus were in fact caused by something else (that they haven't found).

    1. Sorry that you are still struggling x
      I can only imagine how much worse the info would be during covid, especially as most (or all?) face to face meetings are now by phone! :(
      I have read several studies over the last few years that say the more symptoms and the severity of them you had before surgery, generally the more and worse they will be after...
      I think you are 'lucky' if you have no symptoms after, even with a fully removed benign tumour. Although a couple of months after surgery is also nothing when it comes to brain healing, mine certainly improved a lot between several months to a year, and is still improving - albeit slowly - after 4+ years later.
      i think its also normal to worry about symptoms and their cause... after all we never expected to find a tumour in our brain! take care x

  6. Also, in my case, there didn't seem to be a great deal of 'choice' about it, they phoned me a month after the scan and told me to come in immediately, despite the lockdown, and operated within 24 hours. Obviously I had to formally consent, but the message I took from what they said was that if it wasn't operated on I could at some point in the coming months suddenly fall down dead. Exactly how urgent the situation was and just how bad the hydrocephalus was is another thing I have little information about.

    1. wow! having the operation that fast, and after being told on the phone is a trauma in itself and something you need to give yourself time to heal from! x

      I also don't fully know how bad my hydrocephalus was, just that i needed surgery soon or i 'would likely have a stroke or worse'. I don't know if it was that bad and how soon it 'could' or 'would' happen? But I know waiting was awful, having to judge if 'it got worse'!!!

      but when i decided to go to A&E as my headaches increased and i had a high pitched ringing in my ears all night - they did keep me in and bring my surgery forwards!
      I really found writing my feelings down about the whole experience helped - it might help you too x