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