Does anyone here have vision issues? Not just short / long sight.. I’m talking vision loss / retinal issues etc.

[Afterfire]

I’m 41 and always been very short sighted all my life - I’m now -9.50 both eyes with severe astigmatism. I have a lot of autoimmune issues (lupus, sjorgens, asthma, Addison’s etc). Over the past couple of years my eyes seem to be really taking a dive. I have been diagnosed with retinal lattice degeneration, and white without pressure. I had posterior vitreous detachments in both eyes - thankfully neither affected my retinas but I have been left with horrendous black / grey floaters. I’ve always had floaters but these take up half my eye and float around.

I have seen several specialists including consultants at the hospital but my anxiety is terrible about the possibility of retinal detachments - I know I am fairly high risk and every flash and floater I get I feel physically sick wondering if this is “it” and no one can reassure me except to say get yourself to a and e if you feel you need checking….! (Which I know is the right advice).

I just feel really down about it all. Having a retinal detachment would be a disaster for me as I have a disabled child to care for and dh can’t take time off work without us losing tons of money so me having to spend weeks face down recovering actually scares the life out of me.

My vision is really awful and I’m miserable. I just can’t see properly anymore. Everything is blurry and distorted with the floaters and sjorgens dryness- I do have eye drops but these only help so much.

Looking for some reassurance and experiences of others in similar situations, how you cope etc.

Bump….

I have a similar prescription to you also with astigmatism so know what you must be able to see without your glasses.
this year I had a small bleed at the back of my eye and was diagnosed with wet macula degeneration due to severe myopia not related to age - I’m very young to get this apparently. After injections my eye is stable but I’ve been told it can happen again. It’s horrible the thought of it but I try not to dwell on the what if.
I’m also waiting for surgery to remove a couple of lumps on my other eyelid!

try not to worry about the possibility of further detachments. It may not ever happen. And if it does you will deal with it and get through it.

I have had retinal detachments in both eyes, a year apart. None of the specialists knew why - it just happened. In both cases, I had cryopexy with a scleral buckle - extremely standard surgical procedure, done under general anaesthetic. I obviously wasn't mobile for a week after and was off work for a few weeks, but I didn't have to do the posturing/face-down recovery - that's only if they do a retinoplexy or victretomy.

You're already in a very good position by being aware of what the symptoms of detachment are. Mine were: in my left eye, a large grey shadow moving across my sight and my eyesight in that eye going wavy; in my right eye, sparkles and tiny flashes (like looking at fine glitter). Any hospital will take these symptoms incredibly seriously and will be able to diagnose a detachment very quickly.

Please don't let yourself get worried about this. If it happens, they'll operate straight away as it's an emergency. The surgeries saved my eyesight and these procedures have an incredibly high success rate. Please ask me or message me if you have any more questions about this!

Having also had a retinal detachment I agree with all of this. I had a scleral buckle too and the recovery went well and I was mobile very quickly, though not carrying anything heavy for a while. I can't remember when I was back to work, but I was up to a Taylor Swift concert five days afterwards (with the help of some sunglasses!). I found the general anaesthetic recovery the hardest physically part to deal with. I required some additional laser treatment and while the treatment was unpleasant, other than some light sensitivity and avoiding anything strenuous, I was back to normal as soon as the dilating drops wore off and back to work the next day.

Being aware of the symptoms and being proactive in getting them checked out is the best advice I could give anyone. The dark curtain moving across my vision was my main symptom, and also lots of flashing lights in my eye. I ignored my symptoms for several days hoping it would go away by itself. Google suggesting it was a retinal detachment didn't concern me because I wasn't in any of the at risk groups (early 20's, only -5 at the time, no family history, no head trauma) so I decided since it was rare, it wasn't happening to me 🙄 That's left me with some permanent vision loss, fortunately in the part of my eye which is compensated for with my other eye. I also have flashing in my eye, especially triggered by driving at night - so that's something which I avoid now where possible (though it's not that it's dangerous, but I get freaked out by the flashing lights and worry the retina has detached again).

Thank you for replying.

I am trying to take comfort from what you’ve written. Sounds so awful though!

I think part of my anxiety is that I already have so many floaters and flashes and horrible grey bits that swing about - I’m actually scared I wouldn’t recognise the symptoms of a detachment and it would be too late to treat it properly. With the “grey curtain” could you see through it? I think in my mind I’m telling myself a detachment would mean an opaque black line drawn across my vision that would be unmistakable…??

Every flash I get - and I do get a lot because of my various issues - I get myself into a panic.

Its also stopping me enjoying things like travelling - I’m booked on my first foreign holiday in 12 years next year and I’m already anxious about what happens if I get a detachment or issue on holiday. It’s just a constant worry for me.

And I feel angry for feeling that way because I don’t want to live my life like this.

I meant to say too, I'm so sorry you're going through all this - eye stuff is so scary, and I'm also constantly vigilant about any changes to my vision now in case something else has happened.

The grey curtain is like your vision being completely blocked by a dark solid block that will come in from the corner or sides of your eye (if you Google image search "grey curtain retinal detachment" you'll get some decent pictures of what it's like). It's extremely obvious what it is. For floaters/sparkles, the thing to check is whether they're new - I have floaters after the surgeries (and other vision loss) but know where they are, if that makes sense?

I live near to a specialist eye hospital so have been super-lucky to head to their A&E - but they told me that, if I ever wanted a quicker check-up, any optician will be able to look and do a preliminary assessment about whether a detachment has happened. Obviously they can't do all the pupil dilation that a hospital can, to really get a good look in the back of your eyes, but they can tell enough to know whether to send you on to A&E. So maybe you can find a nearby optician that can give you regular checks? But also please never feel like you're taking up time by going to the hospital - as you've said, you're high risk and this is literally what this type of medical care is for.

With the “grey curtain” could you see through it?
I couldn't. The vision loss wasn't blurry or faded for me, it was totally gone. The curtain for me started in the right corner of my left eye and progressively grew across more and more of my vision until maybe about three quarters of the vision was gone before I had surgery. I remember being in recovery after my anaesthetic and trying to see though the patch to see if I could track my finger in what was my blind spot previously.

For travel, I'd make sure that you are with a good comprehensive travel insurer who can either cover the cost of surgery where you are going, or transfer you either home or somewhere where you can have the surgery and covers preexisting conditions. It will probably be more expensive, but hopefully peace of mind that your condition will be treated if you need to. For my detachment after my initial optometrist appointment and a checkup at the local hospital it was already 6pm and I wasn't able to be seen by the large eye unit until the next morning and the surgery was still a success. I know it's different for everyone, but for me there was time to sort arrangements before the vision in my eye was lost.

I understand the anxiety and I'm hyper-aware of any vision changes or new eye symptoms. It sounds like you have a lot of eye floaters and vision disturbances so it's probably harder to identify if something is new and that must be scary. If there are things which trigger flashes (for me bright lights in dark spaces is my biggest one, like driving at night, disco likes like at clubs (managed to avoid those for years though) and weddings) could you avoid those to avoid the worrying symptoms. The first time I drove at night post-detachment I ended up calling the hospital again because I was so worried. But the flashing is less intense for me than when the detachment was happening, so there's a difference in baseline for me. The frustrating thing is that the only thing you can do is be vigilant - but try not to let that go too far and have it be a constant burden of anxiety. I hope you have a great, relaxing time on your holiday next year.

On holidays - as well as the jacked-up insurance, can you write out details of your medical stuff / your medical team in the UK, and any potential symptoms of eye stuff, and then get it translated into the language of wherever you're going? A friend with a different medical condition has these translations ready to go for whenever she goes abroad; it's more for peace of mind for anything else, but does mean that if she gets unwell, the medical team will know quickly how to handle it.

Thank you, that’s all very helpful.

I do have super amazing insurance as I have so many health issues - including Addisons which is so rare. So I feel reassured by that… I just worry the healthcare itself won’t be great. But it isn’t here either at the best of times! So I’ll just have to hope for the best.

Very interesting about the black curtain. I’ve googled the images. In a way that’s reassuring because I can see through my floating grey shapes and they move about.

I really appreciate the replies and kind words.

Apparently Edward Enninful (editor of British Vogue, big fashionista) has had multiple retinal detachments, so we are clearly the cool kids here :)

I read an article about him and his fear of going blind in the BBC news this week 😁 You hardly ever hear of “famous” people with these issues. Was good to see how he manages.

I have vision loss. But it's something different and no one can give me a proper diagnosis. (we know that I'm colourblind and have Nystagmus; but there are other things going on and every test is either clear, inconclusive or not possible to do)

I’m sorry to hear this. That must be very frustrating and upsetting not to have any proper diagnosis.

Thanks. After years of being misdiagnosed, they did say there's a chance I may never get an answer.