Sight loss through brain injury: My daughter justine... - Headway

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Sight loss through brain injury


My daughter justine collapsed in 2014 and stopped breathing she sustained a hypoxic brain injury. She can't speak move or see but her brain is good and she spells to make herself understood.

The hardest thing for her is her sight she can see shapes Colours and light. Does anyone know of anywhere we can get advice.

Thank you.

Kathy (her mum)

15 Replies

Have you spoken to doctors about this? If yes what did they say?

Please phone the headway helpline.

Also contact your local council for a complex care assessment.

I am reasonably sure that the helpline will be able to offer much more support and advice.

Thank you

in reply to Justine43

Will do thanks

Hi Justine,

I suffered a Tbi when I was 21 now I’m 35 years old.

I suffered slight loss as a result -hemianopia. In my blind spot I also see light,colours,shapes etc

I was told by neuro docs it due to parts of my optical lobe that are still functioning.


Thank you

Yes we went to eye hospital and they just said her eyes are healthy just the brain not connecting. Thank for replying

I had sah in 2015 and eyes damaged from burst annurism, pressure in head and 2 eye haemmorhages and 2 eye operations. I have had no help. I asked national Headway rep to see if they had any info and they do not they were thinking of putting a leaflet together sometime. My eye Consultant says he's spoken to other consultants at a conference to no avail, I have retinal damage as well as brain to eye registered partially blind now. it shocks me as to how little knowledge there seems to be and no help at all offered. So good luck with your search and any info posted here will be good if you get anywhere.

in reply to Kathykathy

I have just noticed your post. Your situation is similar to mine. I had SAH Aug 2016 and Terson's syndrome (blood went into right eye, now dealt.) I had a vitrectomy and ERM peel on the eye, Nov 2017.

I am afraid the medical profession are yet to learn about the brain etc. I felt OT were useful and the brain, stroke rehab doctor at my local hosp in Inverness. I had coil op and subdural haematoma, induced coma, should be dead, etc etc at Great Western in Edinburgh, then more time in HDU Aberdeen hosp, then a week at cottage hospital in my own town.

The vision in my right eye is just blurred so will get a lense to block vision but still looks like a clear lense. My rehab doctor told me about that.

You just have to do what you can and just ask especially on forums like this. I am 3 years post SAH and i have turned a corner and am now able to live a life with joy. Joy was not something I felt for 2 years. Suicide was my thought of choice. But I am alive, so just got to get on with it! 'Life's a bitch then you die!!!'

There are a lot of people who now use the NHS so medics are time starved and so I have the attitude of doing what I can for myself first.

Best wishes to you.

M x

Thank you for your vision is very distorted on about the 5th or so new glasses prescription, prisms in lens, cant see much without glasses, nothing is quite where I think it is so bounce off doorways, knock over glasses and if there is wine in them nearly need to apply for therapy to get over the loss ha ha, cant see far infront of me even with glasses, loss of some peripheral vision, and so on, and indeed so it does go on. Apparently guaranteed to need cataract operation in both eyes, not bad enough as yet. Eye sight issues affect every single thing on a daily basis and having to give up driving was a killer for me, so now my world is small, less independent and not free.But as you say we are alive against all odds I too was in a coma on a ventilator etc. I try everything I can to be as positive as possible under alot of very trying circumstances and symptoms, just doing my best and wonder at times how I have that strength which is tested every minute of everyday.Still looking for my mojo which has up and gone. Good luck to you on your journey too.

Thanks Kathy this is what we come up against I understand there is some computer work that may be useful but cannot find how to go about it.

Has she been tested for vitamin deficiency?

No, how do we do this. Thanks for replying

Hi justice, differently phone the HeadwayUK helpline. I give you best luck and be so strong. X

Thank u

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