Hi Paula,
Here are some more comments for you:
Basia Kmita
Paula having your tumour completely removed is an absolute blessing. I completely understand the sadness you feel in not being able to drive again as a result of the visual field loss affecting both of your eyes. There are many patients in a similar situation. For some it is a waiting game to see if the visual fields will improve with time & more rehab; in other patients it is absolutely heart breaking to initially accept as you feel that your independence has been taken away.
To clarify- hemianopia may be a temporary or permanent condition & there are very strict medical guidelines relating to visual field loss. If the condition is temporary in some patients a repeat Esterman test is required in time to hopefully identify improvements in the visual fields.
Paula- Identifying that you have experienced concerns with your walking is very important relating to visual perception & spatial awareness. The way this correlates to driving means that your driving safety performance may be affected to the extent where you may veer close to parked cars or cross the middle centre lane or straddle lanes on multi lane roads & may not realise that you are doing this. You may not see pedestrians/cyclists/ motorbikes and other vehicles peripherally & even miss street signs. Some people may bump into things. In some patients, driving may be corrected as long as the visual fields meet the RMS standards for driving.
Please always maintain that the cause of your visual field loss is as a result of your medical condition and does not define who you are. There is no doubt that you drove very well prior to the brain tumour. More importantly, the fact that you have returned to work is the most positive step in your journey to date both cognitively & socially & it is ok to feel tired which is normal. I hope this helps to explain this for others in a similar situation.
Karlee Rachel
I had my Stoke almost 12 months ago and it left me with a right hemianopia. I also cannot drive. As someone suggested above, I’d highly recommend getting in touch with guide dogs Australia if you haven’t already. They helped me with being able to navigate the community and gave me strategies to make up for my vision loss (less walking into things and now I’m confident moving around independently). What helped me also was going for more walks which deceased the feelings of being disoriented as I became used to the outside world again.
I want to give you hope that there can be improvements. I’ve had 2 visual field tests and I’m about to pick up the results from my third test tomorrow. Within the first 6 months I regained approximately 10 to 15% of my lost vision. I’m also in the process of finding out if I can be granted a conditional license (like someone said above, restricted distances and times you can drive). Being able to drive again is my main goal as I travel for work.
Michelle Lucy
Hi Paula, having a uncle that has been legally blinded by his stroke, only being able to see equivalent to a pin hole we engaged with royal society of the blind and guide dogs to help him, they’ve been amazing and greatly assisted with building his confidence and navigation of a electronic wheel chair (he has lost all confidence now for other reasons) but maybe reach out as they offer a lot of suggestions plus support & there might be some options they can help with.
You’ve got this and you’ll get there xx
Renee Gavin
Hi Paula. I feel your pain. I had a stroke 12 months ago which left me without a license due to substantial reduced peripheral vision. We live in a rural community and I work approximately 75 km from home. This made getting lifts tricky and public transport etc impossible. I contacted vision Australia and they offered little assistance. I have spent the last 12 months working with occupational therapists, doing eye yoga and having repeated field vision tests to assess progress. Obviously it will depend on the % of vision loss and the cause etc but I was told to never give up and I didn’t. I have a very restricted license in the sense of distance and times I can drive but I am back on the road.
Mickyla Moore
I am not sure if you have tried them but get intouch with Guide Dogs Australia. I lost 50% eyesight in both eyes( it returned after 3 years) guide dogs came and helped me with techniques to cope with disorientation, navigating the shops on my own and reading and other things. They are amazing. They offered me a white cane aswell. Not that I really needed it but it was so other people would see it and stop being so pushy around me.
Colin Cook
I'd be wary of a bike. Even walking around I have to be on the lookout for overhanging branches etc. I won't get on the ride-on mower for this reason as I'd probably cause even more head injuries on an overhead branch I didn't see. My problems were caused by a haemorrhagic stroke in Jan 2020 following open heart surgery in Dec 2019 (aortic aneurysm repair). Fortunately I don't have to worry about work as I got an insurance payout from my superannuation fund and I draw a manageable pension from that.
Jerry Stanway
Hi Paula, yes it’s a life changing thing, I had a right occipital stroke in November last year and lost all left vision field in both eyes. I haven’t regained any sight and it’s starting to sink in I won’t get my lisence back. I have problems with orientation and dizziness aswell as what vision I do have left is peripheral and double vision, it’s like the clear vision I do have is looking through a key hole. I’m getting use to it but it’s taking time
Pip Hicks
Paula I’m not sure where your placed but in South Australia this organisation has wonderful help for you for just $10 Life membership
Beyond Blindness, Blind Welfare Association of SA Inc
Colin Cook
I have left field hemianopia a too. It's a pain not being able to drive when you live in a rural area and public transport doesn't exist. I'm seeing a neuro-ophthalmologist in July to see if anything can be done to correct my vision problems (what's left of my field of view is also affected by slight double vision). I'm also hanging out for autonomous vehicles, but I could be waiting a while for them.
Karen Michelle
Adrian's blog may be of interest
Kodie-Rose Smith
I don’t have much advice for you other than to keep up hope. My mum had a series of stroke at 33 and during one of these episodes she lost her vision completely. It took a long time but her vision returned and she regained full vision and was able to drive again.