Monday 29 April 2019

Vision after Brain Surgery - Normal or Not?

My vision has been annoying me for months. Actually make that years, as I have been struggling with it since 2015, it has just not been a high priority with everything else that has gone on.

I was told at the hospital back in 2016 that my tumour should not have affected my vision, as the tumour was in my cerebellum. Even though before and after surgery my vision was awful - jolted and blurry before, and after the world spun a lot! 😵 But they seemed to think that was the hydrocephalus and then the surgery after effects, not damage to my eyes or any long term vision problems.  

At the time I couldn’t manage to see anything close up. I remember 3 weeks after surgery taking my earrings off for an emergency scan and not being able to see to put them back together and dropping one on the floor never to be seen again. (I also struggled with coordination too, so I couldn't even feel what I was doing) 

I wasn’t able to see my eyes in a mirror for weeks. 

I just about managed to put mascara on a month after surgery – as I was going to my uncle’s funeral and I wanted to make an effort to say goodbye to him.  😥

But as I had been very short sighted for over 20 years before (I had my eyes lazered in 2005) it wasn’t something that concerned me too much as it felt my body was still used to bad vision as I had often managed to do things, half blindly, even with no glasses on in the past. Plus as I had been told this would go in time, I just dealt with it along with everything else. After brain surgery there are many concerns and stressors! 

6 months later, when I could apply for my driving licence again, I had my vision and peripheral vision checked via a DVLA optician and was told all was ok 😊 My eyes were mildly short sighted again and she suggested I use my glasses for driving – although I didn’t legally need to use them. I was delighted but my vision close up still didn’t feel ‘right’.

My eyes were also fine according to my previous optician. Although I had changed prescription since before surgery - as now the opposite eye to before was short sighted?! How much was this possibly caused by the tumour or hydrocephalus?

A few months later and after a follow up neurosurgery appointment saying there was no reason why I would have issues with my eyes, I decided to try a different optician as maybe I was going long sighted (needing reading glasses) and, after all, I was about the right age… 

But again the new optician could see nothing wrong with my eyes, I wasn’t long sighted (well very slightly in one eye, but it was very mild) and they thought it might be as my eyes take longer to focus. One eye being slightly long sighted the other slightly short. Just to check I also tried the reading glasses you get in shops and they didn’t make any improvement.

But close up art was still impossible most of the time, and sometimes I just could not read a book, then other days it was ok.

I could never work out why and when it would be really bad or why occasionally I felt my vision was improving…? 

Roll on almost another year and optician appointment and my prescription was still the same - they had no ideas why I had blurry patches when looking close up or struggle to read. Again they did extra peripheral vision checks and all was fine. They again put it down to my eyes being slow to focus. I certainly did not need reading glasses!

Then at the start of this year I saw the Neuro-Optometric Rehabilitation Association website mentioned and this page with common eye problems following a brain injury on it.  

THIS was my vision!! 

And some of the issues I was having are supposedly ‘common’ after a brain injury!!

I feel my eyes can be somewhere between these at various times:

Eye Focusing
Eye Teaming

Also that when I read a book my eye movements do something like this, although the text I am reading goes paler, not bolder.

Eye Movements

So I decided to try and ‘monitor’ my vision, when it is bad or good, with the hope of getting some optometrist to help me with it. These are the main issues:

  • Text is hard to read - the words go in and out of focus, a blur appears in front of it so I cannot read the word or I have so many moving floaters in my vision it feels that the text is moving too.
  • If I draw a long straight line from one dot to another, as I move from one side to the other (and I assume change the main eye I am using) the line changes angle slightly.
  • I realise I still struggle with stripes and cannot look at them - light in between Venetian (horizontal) blinds is awful as it feels like it flickers.
  • As is light in my eyes from LED car or street lights or the sun through the trees, I have to focus elsewhere or they seem to flash inside my brain.
  • I often cannot read in a certain position, but if I move I can?! So sometimes when sitting up, I cannot read clearly - but I lay down and can. Or laying with my head on one side I can’t read, yet turning the other way round - I can.
  • Most of the time I feel my close up vision is blurry, but I have had odd days where I can see crystal clear. No blur, no shadow, just great vision - but it never lasts long. When I have asked people who have reading glasses none of them have this.
  • My vision definitely gets worse the more I read or look at screens.
  • I cannot look at something inside the car when driving as I know my vision wobbles, same as I cannot easily look down at something when walking - as I start walking at an angle.
  • Likewise I often try to use a balance beam at the local park (If you ever see anyone on one laughing as they continuously wobble and fall off, ask if their cerebellum is ok 😂) I am normally now OK if I look down at where I am walking, but when look up I start to wobble. I always try to stand still and look around to the sides, sometimes a quick glance, others turning my head slowly and while I have got LOTS better I can still easily fall off! It shows what my brain is doing when I turn normally!
  • I also realised that I have mild double vision in my left eye when I wake. I have used an old iPhone to look at when I wake, to help me focus on something and not just go back to sleep. Since my surgery it has been blurry most mornings as I see a shadow image on the apple icon, but I realised it is also like this when I close my right eye! So I am getting a shadow image from one eye. 
    My vision looking at the Apple icon
  • This vision is why I find it hard to wake most mornings... I physically wake up and wait to 'wake up properly' - for my eyes and brain to work - and then suddenly it's an hour later! 😒    I don’t like getting up with bad vision as it makes me feel tired and wobbly when I do, often for most of the day. If I wait then it tends to be a much better day.
  • I often cannot see to thread a needle etc, so put on my driving glasses and I can see better; but after a while my vision deteriorates again and so I take them off, and once again my vision improves…! 😳 I wonder if my eyes tire too easily.
  • If I try the ‘dominant eye test’ where you hold an item up in front of you and cover each eye up alternately. One eye the object stays in the same place as it seems when using both eyes, when I cover the other eye the object not only moves sideways (as it is supposed to) but drops down quite a bit too. I am not sure if this is what causes the shadowy blur? 

In my quest to work out the issues I also watched a couple of helpful recording’s:

Understanding Vision After a Brain Injury

Simulation of oculomotor-based reading dysfunctions

…and well I definitely think something can be done to improve my eyes! 

After lots of emails and asking for a referral to Neuro-ophthalmology I am awaiting a (rather slow) NHS appointment to see the Neuro team who will hopefully refer me on… not helped that my original appointment for next month being cancelled and the new one booked for August!!

I will also contact a vision therapist, but I have a feeling it won’t be cheap and I am not sure if we can afford that right now, so I may have to wait for the NHS. As i keep reminding myself this brain tumour has taught me patience! 😬

These websites also have some helpful information and links to Vision Therapists:

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.