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Kerryb

Quadrantanopia

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Kerryb    10

Hi, I'm 29 and suffered a occipital love stroke last May, no cause has been found for it. I'm young, fit, healthy, not over weight and I don't have high cholesterol and I'm not a big drinker?!?! Luckily my stroke has only affected my vision. Just wondering if anybody has seen any visual improvements after 10 months?

I'm also waiting on dvla to make a decision on my driving, hoping I can drive as I have a 17 month old little boy and also if I can't drive I will have to hand my notice in at work :( x

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Hoofbeat    14

Hi Kerry

You sound just like me!!! I suffered my haemorrhagic stroke last November (2013) so almost 4months ago at the age of 27. At the time it happened I was healthy, I didn't smoke, I barely drank, I was fit and had a low BP (it remained low even during the haemorrhage!). I suffered a haemorrhage in my left occipital lobe and no cause has been found (my neurologist suspects it was a cavernous angioma but we will never know).

 

It has left me with right inferior homonymous quadrantanopia. When the stroke happened I initially had hemiopia, but within hours that settled to quadrantanopia. Since then I have definitely seen an improvement (around about the 1-2month mark) with the peripheral vision out at the side, but I still have an area of vision loss nearer the centre.

 

Like you I am waiting on the DVLA's decision, but I am afraid from what I have heard the chances of being allowed to keep my licenc are pretty slim. Have you had a visual field test yet for the DVLA? I had mine several weeks ago and I know I missed 6 spots in the central region. From what I've heard you're only allowed to miss 3 in that area, so I am pretty certain they are going to take my licence off me. My partner rang the DVLA yesterday and they said they are still processing test results from about 2-3weeks before I did my test, so they expect I'll hear in about 2-3weeks time.

 

I have heard so many different stories from different people - I have heard of people who failed the vision test (but not horrendously) who have subsequently been sent for a driving assessment to see how observant they are. However, my consultants and others have told me that if you don't meet the visual field requirements they will take your licence from you.

 

If you subsequently regain some of your vision you can request to have a new visual field test and if you pass that you'll get your licence back.

 

If you don't regain any of your vision then if your visual field remains stable for at least 12 months then you can apply to regain your licence if your consultants can confirm that the condition that caused the vision loss is stable, the vision is not going to deteriorate and that you have fully adapted to the vision field loss. It seems to be this latter requirement that is difficult to prove and I've been warned by my opthalmologist that it is very much down to luck whether they agree you've adapted or not - she told me she had known two identical patients one of whom the DVLA approved and the other whom they did not.

 

I can fully understand your frustration at not being able to drive. If I can't drive I won't be able to return to work full time as the commute will become impossible. I'm already struggling not being able to drive as I live in a remote area and have a horse who is a number of miles away and I'm no longer able to drive to see him!

 

By the way, if you are in the UK are you aware that if you're banned from driving due to vision issues you can apply for a free concessionary bus pass through your local county councile? Usually you have to wait until you have the letter from the DVLA banning you, but I have already managed to secure mine as my doctors wrote letters to accompany my application saying that they didn't feel I would meet the minimum DVLA requirements.

 

Re: seeing improvements 10 months down the line, I'm obviously not at that point yet so can't give you first hand experiences. My consultants warned me that most improvements occur within 3-6 months, but that they had known patients who improved 2 years down the line. I have scoured forums online too and have found people reporting improvements (though rarely a 100% recovery), but equally there are large numbers of people who have not seen any improvement.

 

I'm obviously not a doctor so can't give any medical advice, but I have also been looking into other ways of helping nerve regeneration. I have read that eating lots of omega oils (fish or vitamin supplements) and also B12 can help with generic nerve damage, so I've started taking supplements for both (I am no longer under the supervision of my neurologist, but you should always check with your doctors before trying anything like this!).

 

I also recently heard that Coconut Oil has been proven to help the brain re: Alzheimers and also stroke recovery, so just this weekend I bought some and have been using it to cook with. I used to be a bit of a skeptic with regards to "alternative" treatments, but I figure that trying them won't hurt me (again, you need to check it's safe for you to try aynthing with you doctors first!).

 

Have you heard about Visual Restoration Therapy, e.g. Nova Vision? It's too expensive for me to justify personally, especially given the mixed results, but thought I'd mention it in case you haven't heard.

Next week I'm meeting with a new consultant in neuro-opthalmology whom both my neurologist and opthalmologist recommended I meet, as he's usually the guy that's aware of any new therapies that are out there. I'll let you know how I get on at that appointment.

Good luck with everything.

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Hoofbeat    14

Hi Kerry

I thought you my find this thread I started a while ago interesting - it is on the topic of recovering visual field:

http://www.behindthegray.net/vbulletin/showthread.php?9324-Recovering-lost-visual-field

Also, if you want to practice your visual field tests online (NB. They are not the same as the DVLA ones), then try:

http://dtx.novavision.com/novaassess/

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Kerryb    10

Yes you do sound like me, I had some recovery in the first 6 months but not had a field of vision test since do not sure if I've improved anymore. The dvla sent me for test at the local opticians and he said he thinks I would pass but wasn't 100% sure. It's my upper left quarter is missing, but I'm not sure if I missed any in my central vision? If I can't drive I will need to hand my notice in at work, which is going to be a nightmare.

 

I had a field of vision test at the hospital and he said I wouldn't be able to drive, just hope they base their decision on my recent test that they sent me for. I also paid private for a practical on road assessment that the dvla use and I passed that so I sent it in. But just hoping they don't go on what my consultant sats which was back in December. I live in a remote area in yorkshire so just hoping I can drive!

 

I'm the same looking for people who have had recovery, come across some people who have had recovery and other who haven't, it's just a waiting game I guess. So frustrating! I have looked into the vision restoration therapy but I don't know if it's worth it, my optician said that she doesn't think my vision loss is serious enough to even try it, it's more for people who have very little vision.

Let me know how you get on, I have my fingers crossed for you x

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Hoofbeat    14

Kerry how did you manage to get a private on-road driving assessment? I still have my physical licence but have been told i'm not allowed to drive by my consultants while the DVLA decision is pending. When I first came home from hospital there was no way I felt safe to drive, but now my vision has improved so much that I don't even notice my vision issue on a daily basis and I do feel safe to drive.

 

It is my bottom right quadrant that is missing; I say quadrant but actually it's no longer a quarter as I can now see things out to the side, just not nearer the middle if my peripheral vision. I used to drive well over 30k miles a year and have never had an accident/driving offence do I consider myself a relatively experienced driver for my age. I would hope if I could get a private driving assessment done I would pass it with flying colours!

 

Penny, I looked into the Access to Work scheme but they will only contribute to taxi costs to work if public transport is not accessible. For me there are public transport options but that would necessitate a 2hour commute each way which my neurologist doesn't want me to do on a full-time basis any time soon. Sadly I have been advised that because there is a public transport route I wouldn't be able to get Access to Work (even though in my case the public transport route isn't feasible) :(

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Super Mario    18,006

That's funny because I know of someone who has access to work, taxis to and from work and there is public transport to where she needs to go although it could take her up to 2 hours each way.

Try contacting CAB or a welfare rights adviser at you county council to clarify your position on this. In these times of so much change the people who work at DWP do not know if they are coming or going so could have got it wrong.

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Kerryb    10

I did mine at the William Merritt centre in York, as dvla haven't took your licence you are still able to do the assessment, it was a fellow stroke patient that told me about it, he said you need to get as much evidence together as possible, if it works or not god knows? Just hoping they take it into consideration. I will look into the access to work and see if I can get anything, thank you x

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Super Mario    18,006

Kerry, do not hand in your notice under any circumstances, if needs be let the firm finish you. I say this because if you leave voluntarily it will affect the benefits you can claim.

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sallym25    16

Hi Kerry,

Welcome to the forum. I too have my upper left quadrant gone. It's been almost 5 years since they took my licence from me. I was sent for a DVLA assessment which I failed miserably. I do think it was more due to cognitive issues rather than my visual loss though. That and the fact they made me do it in a city centre.

 

I held my licence for 25 years, no accidents or points at all and I never drove in cities as they made me too nervous. I am so angry that they wouldn't let me do it elsewhere. We have two driving test centres within a 15 mile radius of our town and I find it really unfair they will allow new drivers a licence for testing in those areas but not me. :frown: Do they honestly think anyone would drive if they were uncomfortable doing so?

 

I am very interested in hearing about this private assessment you had. How much did you have to pay for it and who would I contact to get one?

thanks

Sally.

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Hoofbeat    14

Kerry

I just contacted a local private driving assessment centre but they told me that as the DVLA are investigating me to determine whether or not I have sufficient visual field they would not be able to let me do an assessment. They told me that until the DVLA can confirm I have sufficient visual field they cannot test me. So it sounds like there is no-way of me doing a driving assessment :(

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Kerryb    10

Yeah I've got my licence back! Dvla have sent me a letter to confirm I can drive. I did my assessment at the William merret centre in York. It cost me £90 x

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sallym25    16

That's just brilliant news Kerry.

You've made me sit up and take notice. I now plan to reapply. I think I will contact a local council representative to try to have any assessments in less crowded places too.

Well done you. :-P

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Hoofbeat    14

Kerry

Wow! That's amazing news, well done Kerry!

The William Merret Centre belong to the same organisation as my local driving centre but they still won't let me do it - they refuse because although I still technically have my licence I'm still under investigation. I think I'll try contacting the William Merret Centre even though it's completely the other end of the country to me, to see what they say!

Edited by penny
Quote removed

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Hoofbeat    14

I told them I still have my licence but the DVLA's medical team are still investigating and they said until the DVLA had confirmed that they are happy for me to drive they couldn't test me.

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Kerryb    10

I'm not sure what to suggest? I was told as long as the dvla knew I was driving I was fine. If nobody has told you that you can't drive then you are fine to drive until the dvla say decide? Have you had a field of vision test at the hospital or anywhere else? X

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Super Mario    18,006

Hoofbeat, before you start to drive you really need to clarify your situation. I suggest that you ring DVLA and ask them outright if you can drive until their medical department have made up their minds.

You do not want to put your licence and insurance in jeopardy.

Edited by penny

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Kerryb    10

Yeah I agree, just ring dvla and see what they suggest. They told me that I could send as much evidence in as I wanted and it would be taken into consideration x

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Hoofbeat    14

Sadly Penny and Kerry it isn't as easy as getting an answer from the DVLA - I've tried!

I have asked the DVLA for clarification before as to whether I can drive or not whilst they examine my case. They said "we cannot advise on whether you can drive at present, please follow your GPs advice". When I asked my GP she said she wasn't comfortable making that decision as she wasn't a medical driving expert and told me to go with what the DVLA said (even though I told her they deferred to her opinion)!

 

As a result I haven't been driving as I'd rather be over-cautious. Even when I advised my insurance company of my haemorrhage and subsequent DVLA medical investigation (I thought I'd better just to be safe) they said they didn't care if I drove if I still currently had a licence! It's terrible that there isn't a black and white system - I suspect there are plenty of people in a similar situation to me who are driving whilst they wait to find out the results.

 

It doesn't help that the DVLA are so ridiculously slow - I notified them over 3 months ago and they still haven't made a decision (and all they've done is contact my doctors and send me for a vision test in that time!). Spoke to them last week and they told me they have a backlog and are still processing vision tests from weeks before I did mine so I would have to wait a while longer yet!

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