Eye Stroke

[Booth2332]

I have recently been diagnosed with Eye Stroke and have lost central vision in right eye has anyone any experience of this?

[Hidden]

Sending you a hug X

I had branch retinal Vein occlusion 6 years ago which I was told is basically an eye stroke but treatable with antivegf injections.

A retinal Artery occlusion is more serious as it cuts off the blood supply and the damage is typically worse. My hubby had this many years ago and there was no treatment available at that time. I don’t know what is available for it nowadays.

I would hope your ophthalmology doctor/ consultant has fully explained to you what form your eye stroke has taken and the prognosis for you.

If they haven't then you should definitely ask.

If you haven’t actually been referred to a hospital eye clinic then insist on an immediate faxed referral or go to a& e ! Time may be of the essence.

If you're in the UK contact the Macular Society helpline (on their website or scroll down here to 'Topics' i think the number is in the 'Newly Diagnosed' one, also there a list of non UK help) - they will be able to give you accurate information on what you should expect from your eye clinic and will support you in dealing with them if you need.

They will also be able to help you make the most of the peripheral vision you have in that eye.

If the sight in your other eye meets the required standard you should be legal to drive still but check with your doctor and the dvla / car insurance too in case you need to notify them (some things you have to notify but can still drive).

Everyone's situation is different but if your other eye is good your brain will learn to compensate and you can still live a full life. My hubby was able to continue to drive, work, use computers, use woodworking tools etc with just the one functioning eye.

If your other eye isn’t that good but you want to keep working but need help the uk government Access to Work scheme is brilliant. I can also personally recommend a UK co called VisionAid who came out for free and demonstrated a whole range of vision aids and prepared a report for the AtW application (which you do easily on line/phone).

The RNIB also have a lot of good info and support.

Sight problems are known to be akin to bereavement emotionally so be kind to yourself.

This forum is a great place to find supportive experience from others.

The mac soc also have Facebook pages where you can find others with your sight problem ( but of course they're not as anonymous).

Good luck going forwards.

[Pecker1]

Hi, I just found your post and although it's now a year old I'm hoping you still check in with this forum and that you're doing ok. I had a Central Retinal Artery Occlusion ( eye stroke) nine months ago and lost sight in my left eye. I have since had some peripheral vision return even though the hospital ( who were totally hopeless) told me in point blank fashion that I wouldn't, but the central area is still gone. I was wondering if you would be kind enough to let us know how you are getting on and if anythingor anyone has helped you.

[Panther_1712]

Hi, I have recently (3rd Aug 2021) been diagnosed with CRVO ... I had an eye stroke....I have high blood pressure and on medication but woke up and unable to see.I have had 4x eylea injections. Been told damage permanent. Was never given any information and just joined the macular society. The conference on Saturday gone was fab.

I'm still looking g into things as I have stopped driving but opticians say I am ok an should be able to drive.

I'm only 54 and this has been a complete shock to me.

I can see colour and shapes but I am unable to see centrally ... cannot see faces clearly, cannot read or use mobile phone with left eye only ... I have no idea if I will completely loose what I have as still trying to find some help. Consultant always in a rush and never seem to allow me to ask questions. Its frustrating.

Happy to keep in touch with you ... my name is Chrissie xx

[Pecker1 in reply to Panther_1712]

Hi Chrissie

I think the original poster on this topic must no longer visit this site as he has never responded to anyone who has replied to his post.

I'm sorry to hear you have had a CRVO. I had a CRAO which is usually more serious apparently. Your situation sounds very similar to mine. I woke up one morning in January this year and found myself blind in one eye just like you. Also like you the hospital I was taken to were hopeless. In fact beyond hopeless ( I'd love to name and shame them). It was five hours before I was seen by a consultant who basically told me it was too long a time to save my eye. He did make a half hearted attempt to move the clot but gave up very quickly and then told me I would never see out of the eye again. No empathy at all, no kind words, no hope at all of any improvement. Just terrible, I really do think that some people shouldn't be in the medical profession. Anyway he was totally wrong as some vision did start to return after a few days and I am now ten months later, with no central vision but with a reasonable amount of peripheral vision. There has been improvement as time has gone on and I'm still hoping that I might yet get more improvement. I now see a specialist privately and what a different experience. He spends time talking and explaining and his attitude is completely different. If you have a good optician I'm sure he will be able to recommend a good private specialist. I asked my optician and now see the specialist he recommended. Your optician might even refer you so that you wouldn't have to pay but if you don't want to go down that route which would involve waiting you could do what I did and see him privately. The cost was £170 for the initial consulatation and has been £130 for subsequent consultations. In any case it's a good idea to see someone who will talk to you which in both of our experiences the NHS are incapable of doing although I'm sure there will be some exceptions.He says that as I have had some improvement I might get more but that the eye will never be the same as it originally was. So there is some hope at least. I don't think from what he's told me that your eye will get worse unless you were to have another blood clot and I'm guessing that you are now on blood thinners to reduce the chances of that happening. His attitude is to keep positive and just get on with life which is what I'm trying to do but you will know that it is a major shock when something like this happens. For many days after it happened I found it very difficult to put the light out at night for fear of not having any sight when I woke up but things do get better in time believe me. I'm guessing your affected eye also has some impact on your overall vision as well but apparently the brain adjusts to that over time.

So keep positive and contact me anytime you feel like chatting. I would in fact love to hear from someone going through the same thing. Also very interested to hear about the conference you attended with the macular society and whether they gave you any useful information.