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Original poster

Any optical people about? PVD / retinal detachment

12 replies

Xrays · 14/04/2023 18:59

I’ll start by saying I have terrible vision so the usual reassurances of 80% of retinal detachment surgeries being a success doesn’t necessarily apply here… I’m -9.50 both eyes, white without pressure retinal issues, lattice degeneration and astigmatism. (Doing well 👍). I also have multiple other chronic illnesses including lupus and all sorts. I’m annoyingly complex.

Anyway, I’m in the middle of a PVD (post vitreous detachment) that has been going on for weeks and weeks now. My left eye did the same thing last year, I had flashes and floaters for ages, saw several opticians as an emergency in a panic, they said everything was okay but referred me to the eye hospital just in case, they checked me, all good “just pvd” and about 6 weeks later the flashes stopped (just been left with what the optician has called the worst floaters he’s seen in 30 years but hey…). And now my right eye is doing the same thing. It’s been checked twice over the last few weeks by two different opticians. Both say it’s pvd and should settle - but- I have a retinal scar / freckle in that eye that I’ve had since birth or a young child that they think the jelly is catching on and this is causing me really annoying flashes - so quick you’d almost miss them but there nonetheless. They have said the jelly should separate and it should stop. But it isn’t. And I’m going on holiday - first foreign holiday in 15 years (paid for with some inheritance) in June and I’m very anxious as to whether it’s actually going to settle or whether I’m going to be stuck in Spain having a retinal tear / emergency. (I do have insurance but that’s not the point- if I need surgery I would need to be flat surely to aid healing so any surgery would need to be delayed till I returned home?) But - equally with my vision a retinal issue could happen now / tomorrow / years in the future or not at all: so I never go away anywhere?

Feeling so anxious and fed up with it all. I feel like I’m constantly on edge waiting for my retina to suddenly tear every time I have a flash - and oddly enough I tend to only notice the flashes when I have my glasses off which I don’t really understand! Maybe because my brain is looking for things to focus on as everything is blurry?!

Any words of advice or reassurance welcome. Feeling really low and stressed.

OP posts:
Original poster
Xrays · 14/04/2023 19:04

I should add the optician I saw a couple of weeks ago said I should be fine for my holiday but equally he didn’t have a crystal ball and couldn’t promise I wouldn’t have an issue either due to the pvd or due to just bad eyes / bad luck.

OP posts:
Original poster
Xrays · 14/04/2023 23:35

👀🤷‍♀️ Hopeful bump.

OP posts:
FatAgainItsLettuceTime · 14/04/2023 23:51

No one will be able to give any real indication of whether this will result in a tear, it could, but likely won't if the experts have looked and think everything is looking ok.

I've got fucked up eyes too. Colobomas in both eyes, very shortsighted, astigmatism and some scarring due to various childhood issues. Right eye the coloboma is in an unusual placement right where the optic nerve sits on my optic disc, meaning fluid would enter then recede behind the macula. For years we 'watched and waited' then one day the macula separated detaching the retina.

The surgery was fine, a weird thing to think about but actually not a big deal and the light sedation they gave me was blissful. Recovery was painless but strange and uncomfortable because I had to stay in a facedown position for 3 days, even walking to the toilet I had to bend 90 degrees at the waist so my nose stayed parallel to the floor. Then it took a couple of weeks to be able to see much of anything out that eye because they place a gas bubble in the eye to replace the vitreous fluid that's removed, you can't see through the gas so as it disperses bit by bit day by day you start being able to see over it, like having an eye half filled with water.

I have lost a lot vision in that eye, but that was happening before the detachment so I have a gap in peripheral vision and central vision is reduced visual acuity 6/48.

In reality though it has no real effect on my life, my other eye makes up for it so with glasses and both eyes open I have good enough vision to drive and do everything else. The only thing I can't do is get contact lenses because the opticians refuse to take the risk of an infection in my good eye so won't prescribe.

If it happens then you'll deal with it, you'll be in a place with access to hospitals and they will do what they need to do to fix it.

Original poster
Xrays · 15/04/2023 08:31

FatAgainItsLettuceTime · 14/04/2023 23:51

No one will be able to give any real indication of whether this will result in a tear, it could, but likely won't if the experts have looked and think everything is looking ok.

I've got fucked up eyes too. Colobomas in both eyes, very shortsighted, astigmatism and some scarring due to various childhood issues. Right eye the coloboma is in an unusual placement right where the optic nerve sits on my optic disc, meaning fluid would enter then recede behind the macula. For years we 'watched and waited' then one day the macula separated detaching the retina.

The surgery was fine, a weird thing to think about but actually not a big deal and the light sedation they gave me was blissful. Recovery was painless but strange and uncomfortable because I had to stay in a facedown position for 3 days, even walking to the toilet I had to bend 90 degrees at the waist so my nose stayed parallel to the floor. Then it took a couple of weeks to be able to see much of anything out that eye because they place a gas bubble in the eye to replace the vitreous fluid that's removed, you can't see through the gas so as it disperses bit by bit day by day you start being able to see over it, like having an eye half filled with water.

I have lost a lot vision in that eye, but that was happening before the detachment so I have a gap in peripheral vision and central vision is reduced visual acuity 6/48.

In reality though it has no real effect on my life, my other eye makes up for it so with glasses and both eyes open I have good enough vision to drive and do everything else. The only thing I can't do is get contact lenses because the opticians refuse to take the risk of an infection in my good eye so won't prescribe.

If it happens then you'll deal with it, you'll be in a place with access to hospitals and they will do what they need to do to fix it.

I really appreciate you taking the time to reply. I’m sorry you’ve also got bad eyes. It’s reassuring to know that the surgery was okay. I think I’m just stuck in this terrible cycle of anxiety about it all. I’ve had all kinds of invasive health procedures and issues before and I think I’ve developed a lot of medical ptsd and for some reason anything to do with my eyes completely sends me into a panic. I am hugely phobic that I’m going to lose my sight either because I’ve had a tear or detachment that I haven’t realised I’ve had because the flashes and floaters are so normal for me now I’m not even sure what’s new / what’s not, or because it will be unable to be repaired.

I actually feel a lot of grief over my changing vision. It’s getting progressively worse as I’m getting older (I’m nearly 43 now).

OP posts:
FatAgainItsLettuceTime · 15/04/2023 08:46

The surgery sounds horrible, being awake, keyhole surgery on your eyeball.....

But in actuality, you walk into the theatre, lay down, they give you a light dose of sedation so you can still talk and have a conversation but just feel completely and totally relaxed and worry free. You can't see anything that's happening or feel it. Then when they're done you walk out of theatre, have a cup of tea or coffee and a biscuit and go home. I was in a taxi within 30 minutes of finishing.

Had a plastic shield over my eye for the first 24 hours, then just loads of drops for a couple of weeks and the whole facedown thing for 3 days.

One of the tests they do for a tear is to look at a grid, if the lines are wavy instead of straight and if you can't see the crosses in the corner where each square meets then it's a sign you may have a detachment.

Original poster
Xrays · 15/04/2023 10:31

FatAgainItsLettuceTime · 15/04/2023 08:46

The surgery sounds horrible, being awake, keyhole surgery on your eyeball.....

But in actuality, you walk into the theatre, lay down, they give you a light dose of sedation so you can still talk and have a conversation but just feel completely and totally relaxed and worry free. You can't see anything that's happening or feel it. Then when they're done you walk out of theatre, have a cup of tea or coffee and a biscuit and go home. I was in a taxi within 30 minutes of finishing.

Had a plastic shield over my eye for the first 24 hours, then just loads of drops for a couple of weeks and the whole facedown thing for 3 days.

One of the tests they do for a tear is to look at a grid, if the lines are wavy instead of straight and if you can't see the crosses in the corner where each square meets then it's a sign you may have a detachment.

Thank you.

The face down thing is what’s worrying me about going abroad. I mean if it happens on holiday how am I meant to get home without causing further damage either by delaying surgery till I get home or by having surgery and then having to travel? So difficult. And I can’t just wait until it settles, because it might not settle or the other eye might randomly “go”. Arghhh.

I think just writing it all down helps. It’s hard living with the unpredictability of it all.

OP posts:
FatAgainItsLettuceTime · 15/04/2023 10:36

Go on holiday.

The facedown thing is contested, it's not consistently done and possibly may not be of any use. Last I read they'd decided to reduce from 3 to 2 days and we're debating whether it needed doing at all.

Spain has great hospitals and health care, and absolute worst case scenario is that you can't fly because of the pressure so your insurance sorts out travel via road, train or boat.

Likelihood is you'll just go on holiday, have a great time and come home.

Original poster
Xrays · 15/04/2023 11:27

FatAgainItsLettuceTime · 15/04/2023 10:36

Go on holiday.

The facedown thing is contested, it's not consistently done and possibly may not be of any use. Last I read they'd decided to reduce from 3 to 2 days and we're debating whether it needed doing at all.

Spain has great hospitals and health care, and absolute worst case scenario is that you can't fly because of the pressure so your insurance sorts out travel via road, train or boat.

Likelihood is you'll just go on holiday, have a great time and come home.

True.

Thank you for helping me work through it. 💐

OP posts:
Chewbecca · 15/04/2023 11:33

Can I ask about your other issues and if you have a diagnosis/ reason connecting them?

The most common cause of rd in children is a connective tissue disorder, affecting collagen so joints and ears as well as the retina. ‘normal’ RD surgery only repairs the main issue, ignoring the little ones round the edges which are common if you have this condition. There is a specialist service in Cambridge who join up opthamology, audiology and rheumatology. Might you have a connective tissue disorder?

Original poster
Xrays · 15/04/2023 11:36

Chewbecca · 15/04/2023 11:33

Can I ask about your other issues and if you have a diagnosis/ reason connecting them?

The most common cause of rd in children is a connective tissue disorder, affecting collagen so joints and ears as well as the retina. ‘normal’ RD surgery only repairs the main issue, ignoring the little ones round the edges which are common if you have this condition. There is a specialist service in Cambridge who join up opthamology, audiology and rheumatology. Might you have a connective tissue disorder?

That’s very interesting. Maybe that’s a lot to do with my lattice degeneration- although apparently a lot (well 6% roughly) of the population have this and will never know. I have lupus - which is a form of connective tissue disorder. I also have addisons, hypothyroidism, sjogrens, asthma, pituitary issues and intercystinal cystitis. My body just basically hates itself… 😳

OP posts:
Chewbecca · 15/04/2023 11:42

🥲

I would still go on the holiday though, Spanish healthcare, if you needed it, is largely better than ours currently.

My family have had preventative laser on their retinas by the Cambridge team as the risk of RD / tears is so high. A good ophthalmologist can see if it is this issue by studying the dilated retina, it looks ‘lacey’ and different. They don’t seem to always tell the patient though, or refer to the specialists.

Original poster
Xrays · 15/04/2023 12:05

Chewbecca · 15/04/2023 11:42

🥲

I would still go on the holiday though, Spanish healthcare, if you needed it, is largely better than ours currently.

My family have had preventative laser on their retinas by the Cambridge team as the risk of RD / tears is so high. A good ophthalmologist can see if it is this issue by studying the dilated retina, it looks ‘lacey’ and different. They don’t seem to always tell the patient though, or refer to the specialists.

I really wish they’d offer me this. I’ve asked about it several times and they always say (this was at Norwich hospital and with the more local opticians I’ve seen) that they don’t tend to offer it anymore as there’s debatable evidence as to whether it does actually help to prevent retinal detachment etc. I feel like I don’t really know what to believe anymore! I think when I get back from my holiday I’ll do some more investigating. Thank you for sharing this with me.

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