‘Do you see what I see?’…

…Well, if you’re blessed with reasonably healthy peepers in good working order, dear Reader, the answer is – fortunately for you – a resounding ‘No!’.  During my ongoing RD journey, I have on many occasions attempted to describe to people the often weird and frequently frustrating way it’s affected my view of the world but it’s incredibly difficult to explain and, in all fairness, probably equally difficult for the good-sighted person to comprehend.  However, with the help of an extremely patient photographer who was happy to listen to my explanations and engage in extensive jiggery-pokery with photo-editing software, I now have some visual examples which go some way to describing what it’s like looking at the world through my eyes.

Picture one: retinal detachment

detachment

This shows what my vision was like when I had my first detachment, back in April 2014.  It started with a couple of tiny black floaters which came and went, and a small cloud of very pale floaters up in the top right corner of my vision which I could only see if I looked up to the bright sky.  Next, I experienced a kind of visual ‘pulling’ at the left side of my eye.  Within hours, a solid black curtain began to spread slowly across my vision until I could only see a small amount at the far right-hand side.  I now know that the much-dreaded ‘curtain’ must be treated as a medical emergency, as surgery is required as soon as possible in order to have more chance of saving vision.

Picture two: looking through silicone oil

oil

This gives some idea of what it’s like looking through the silicone oil in my eye at the current time.  Everything is very blurred, to the extent that I can’t make out any detail in people’s faces or read text unless it’s GIANT TEXT (obviously a lot bigger than that – I’m talking the size you get on the side of a bus, for example).  Colours appear far less saturated, and straight lines are no longer straight but have little wiggles in them (this was something which unfortunately couldn’t be demonstrated in the picture).

Picture three: looking up, through silicone oil

oil-looking-up

This demonstrates what it’s like to look up through the silicone oil, which I try not to do because lots of little black floaters start to come down and freak me out.  I see the line of the oil, which hovers and moves around depending on the angle I’m looking at and the position my head is in.  If I lie on my side and look up, I can see it at the top-right of my eye.  When we look at something, the image projected onto the retina is inverted and reversed; this is sent to the brain via the optic nerve and the brain then ‘flips’ everything around.  In effect, it’s like looking in a mirror whilst standing on your head.  So, because of this, and because the oil floats in the eye (a bit like a bubble in a spirit level), I think that what I’m seeing here is actually the bottom of the oil bubble.  I’m not quite sure why I see the black floaters or exactly what they are – bits of debris or tiny bits of oil which have escaped from the main bubble, perhaps?  If anyone knows, please enlighten me!

Picture four: looking through silicone oil when outside on a cold day

cold

I have no idea why this happens, but when it’s very cold and I’m outside, the vision in my RD eye gradually becomes cloudy until it’s as if I’m looking through thick fog.  Once I go back inside, the foggy vision gradually clears as I start to warm up.  I once asked one of my surgeons about why this happens, and he seemed rather intrigued but unfortunately wasn’t able to explain it.  My sister observed that cooking oil becomes cloudy due to changes in temperature, to which he looked highly amused and pointed out that he’d injected silicone oil into my eye, not cooking oil! 😮

Picture five: night vision through silicone oil

night

People often think that because I find bright light extremely difficult to deal with I must be absolutely fine in the dark, but unfortunately this isn’t the case.  Everything is still very blurry, and because I can’t see any detail using my right eye, the darkness just exacerbates this so that I can’t see very much at all.  Difficulties with depth perception are also worse in the dark.

Of course, some of the weird things I see just can’t be described adequately using still images.  One example of this is what my eye buddies have described as ‘the lava lamp effect’.  This is when a small bright white orb of light suddenly appears and scoots around part of the perimiter of my eye before disappearing again.  Sometimes, it breaks up into several smaller orbs of light which fling themselves in different directions before disappearing.  This can happen at any time and occurs multiple times a day, as well as during the night.  It can be extremely distracting, although I have kind of got used to it now.  I’ve never been given a definitive explanation as to what causes it but have been told that it’s probably traction on the retina.  Another odd effect is a shaft of light which seems to beam down into my eye when I catch the light from a certain angle.  It mainly seems to be overhead lights which are the culprit.  As well as all this, there’s the constant flickering which occurs whenever I move from a bright room into a darker one and is the source of much paranoia at times.  Finally, the floaters in my left eye have remained rather appropriately elusive, despite several attempts to capture an impression of them in a photo, so this might be a project for another day…

Note: Huge thanks to the patient photographer, for producing these images for me, in a radical departure from the far more aesthetically pleasing subject matter of landscapes and flower photography.  🙂

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28 thoughts on “‘Do you see what I see?’…

  1. Pingback: Headlight horror | RD Ramblings

    1. ejb117 Post author

      Hi Marilyn – thank you for your comment! I’m sorry to hear that you’ve been through the nightmare of retinal detachment as well though. How are your eyes now? Did you have gas or oil? I’m under Moorfields as well – I find it comforting to know that I’m being treated by one of the best eye hospitals in the world, but at the same time I wish there was a magic wand!

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  2. Pingback: Visual fields | RD Ramblings

  3. Leslie

    This blog has become the most important thing in my life and I only discovered it last night! Thank you for posting your experiences. Sadly I have been through everything you’ve written. I had my oil removed 3weeks ago and now I’m sure I’ve detached again. He said if that happened there’d be no more they could do so a permanent oil bubble will be put in. So you have given me strength, hope and someone who’s been there and understands how super scary this is. Thank you from the bottom of my heart.

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    1. ejb117 Post author

      Hi – thank you for your comment; I’m really pleased my blog has helped you as this is one of my aims in writing it! However, I’m so sorry to hear that you’re in the middle of the retinal detachment nightmare as well… When you say you’re sure you’ve detached again – have you had it checked out by the hospital? If not, I would say go and get it checked as soon as you possibly can! Let me know how you get on, and I really hope it’s not as bad as you think…

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      1. Leslie

        Just want to thank you for replying. My post op is this Tuesday and he’s already said the only urgent thing I should call him about is if everything went black because they can’t do anything more for me anyway…..PVR just like you. I’m wondering if you have a permanent oil bubble like I’ll have to have. I mean for life. I’ve been reading your posts but haven’t reached one that says you’re retina is on its own now with no “bubble support”. How wonderful that’d be for you, but yes, we will always worry about it, won’t we? People don’t understand that. Thanks again. By the way, I just LOVE your idea of giving your oil bubble a birthday party! I will totally do that if I have to have a permanent one. So far, my longest oil bubble was 9 months.

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      2. ejb117 Post author

        No worries – it’s always good to hear from fellow eye buddies and exchange experiences! Do you mean your post-op is this Thursday? Or next Tuesday? If you’re worried, you could always ring the hospital for advice – I’ve done that before. Whereabouts are you in the world? Health systems can be quite different in different countries. I’m in the UK.

        I’m sorry you have PVR as well… it truly is a curse. I’ve written about it in one of my posts. Yes, I still have the oil at the moment. It’s my third lot of oil, and was put in in May 2015. I had 360° laser at that time but the retina redetached a little beyond the laser line a few weeks after the surgery. There was talk of me having oil for life, but now I know they would ideally like to get it out if they can get the retina to stay put. As the oil isn’t causing any complications at the moment they’re just monitoring it for now. How many oil bubbles have you had? Haha – Yes, each year that goes by without further surgery feels like a huge achievement for me! Yes… we will always worry, unfortunately. I often get frustrated at the number of people who just can’t seem to comprehend our anxiety and the very real reasons for it. Do you have much support from people around you?

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      3. Leslie

        You are amazing! Your strength and your optimism are so great and just what so many of us need right now. Yes! I have a great support system! My husband is my rock! And my friends. But like you say…they all say, “you’re not detached”, “this can’t continue…you’re too good a person”, “you need to think positively”, etc. It’s nice but they really don’t understand and at some point their eyes glaze over. Even my mom today said, “I’m so sick of your eye situation”. Jeeze! How the hell does she think WE feel? Anyway, people don’t get it. The biggest thing I have trouble with is similar to what you experienced….I went to my ophthalmologist for 18 months….even took my husband along….telling him I had the exact same same floaters his lobby brochures warned about only to have him tell me I’d gotten “one day older”. It was preventable. Anyway, I feel like if I get a permanent oil bubble in the next few days I’ll make him my friend and thank God for him and give him birthday parties….thanks to you❤️ P.s. I’m in the U.S.

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  4. Leslie

    I have an amazing support group with friends and family. My husband is my rock. I’m super lucky. But, thanks to you, I’ve now joined a few FB support groups….never thought about that until I read your blog. Somehow it makes a huge difference to talk to people who’ve been there and understand. I had gas and buckle, then detached again so got oil, lens removal and retinectomy then detached again and then oil again which lasted for 9 months. I honestly believe the difference was the steroid drop they gave me the last time. Normally they give prednisone but the last time they upped it to Durezol and I stayed attached. Part of PVR is the swelling which then leads to scar tissue and detaching so if they can keep the swelling down that’s a huge help. But of course you know that.😁 So glad they’re not giving up on you! Thank you so much!

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    1. ejb117 Post author

      Hi – thanks for your last two comments and sorry for my delayed reply… we’re in different time zones and today has been one of those days! I’m really pleased that my blog has helped you and thank you so much for the compliments – it really means a lot to hear such things from other RD patients! Yep – the ‘you must think positive’ comments drive me crazy, and when people say things to me which aren’t very understanding I think, ‘it’s okay for you – you don’t have to deal with it every time you open your eyes!’ People just don’t realise how emotionally exhausting this is to deal with.

      It sounds as if you’ve been through the mill a lot too. Do you know what caused your first detachment? And what makes you think it’s detached again? What are you seeing now? Yes, you’re right about the swelling and inflammation. It often seems to be a vicious circle in that we detach so need surgery, but surgery causes inflammation which then sets off the PVR again. ;-(

      I’m pleased to hear that you have lots of support and it’s great that You’ve joined some of the Facebook groups – I was actually going to suggest that! I’m in a few but I find the most helpful one is ‘Retinal Detachment and Vitrectomy Support Group’. There are people from all over the world in that one and a lot of people in the US. I would have gone crazy by now, if I didn’t have that group! I’ll try and find you on Facebook if you like, so that we can keep in contact and share experiences?

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  5. Leslie

    I am being super needy and I’m going to stop. I’m so sorry. Just feeling vulnerable and extremely sleep deprived. Thank you for all your help and kindness. See you on FB😁❤️

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  6. Alan

    Thank you so much for posting the pics. Had oil put in 4 days ago and it’s so far going well. Your pics are exactly what I see. Detachment was mainly age (57) related they tell me, had plenty of warning before it went black, thought maybe I was getting cataracts. Nieve, I know. Had some large tears so that’s why oil was used. The plan is to leave it in 6 to 8 months. Doc is optimistic but your blog is giving me a dose of realism. Thanks again.

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    1. ejb117 Post author

      Hi Alan – no worries; I’m glad the pictures help. Sorry to hear you’ve had to have oil too… yes, it’s sometimes used in cases of giant tears or complex redetachments. Was your macula still on, do you know? Wishing you all the best in your recovery – take it very easy and follow the surgeon’s orders to the letter!

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  7. Melanie Shee

    I have just come across your post. It’s great! I say that as a fellow retinal detachment silicone oil patient who still struggles with what’s left of the oil, the. Flashing and inner retinal detachment. I also call my white light lava lamps and struggle to describe all that’s still going on in my eye! Going to direct people to this site. 3 days after my oil went in I developed an lillac opaque circle in my vision that’s never gone and don’t think it’s going too

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    1. ejb117 Post author

      Hi Melanie – thanks for your comment! I’m sorry to hear that you’re a fellow member of that club no-one wants to be in… the RD club! Do you still have oil in at the moment? The lilac opaque circle sounds odd… what have your surgeons said about that? Are you in the UK?

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      1. Melanie Shee

        Hello! It’s been removed now so just have circle of oil floating about which was left in when they removed it. My retina was an odd colour when the oil came out but then because ‘normal’ again. Hard to tell but think it’s a reaction to the oil (I am hyper sensitive to many things) think this has also lead to the inner retinal dysfunction. Nothing more they can do for the right eye but pleased to say distance vision is good but not close up. Left eye hyper active with vitreous coming away again hence warning, Yes I am in the U.K. I have read a lot of what you have written and relate to so much of it so thanks

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      2. ejb117 Post author

        Ah, I see. (No pun intended!) That’s great that they’ve been able to remove the oil! So you had 5 surgeries on that eye including the removal of oil? I think it’s common that they can’t get all of it out, but hopefully your brain will eventually learn to ignore it. Which hospital do you go to? I hope the vitreous in your good eye comes away without any problems – fingers crossed for you! 🙂

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      3. Melanie Shee

        Ha ha! I knew they couldn’t get it out but knowing and then experiencing it the gold/ black circle flying around mu Eye which then splits off constantly is bet different. Let’s hope so but 11 months now and still demented by it and the other floaters and flashes. It great if I keep my head still but that’s not going to happen 😊. Do you still have oil in? I had my treatment at Sunderland Eye Infirmary which is a stand alone specialist hospital not too far from me so lucky in that respect. I am so grateful for what they did just still trying to adjust to it

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      4. ejb117 Post author

        Ah – Yes, That’s the same with a lot of things in this RD journey – the experience is different to the knowledge! Posturing sounds like a doddle until you actually have to do it, for example! It must be really hard for you with the PVD in your other eye at the moment… I hope it resolves soon! Did you have PVR in your RD eye – was that why it kept detaching? Yes, I still have the oil – this lot of oil has been in for 3 years now. I just had to look up Sunderland on the map (appalling geography!). Good that you have an eye hospital not far away. By the way, how did you find my blog? Just curious!

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      5. Melanie Shee

        Oh yeah posturing. I had applied for a job and not responded to interview request and they rant to ask me to go in and had to explain why i couldn’t when posturing! Wow 3 years – do they intend to take it out or leave it in ? How oftent do you see the consultant now? I hadn’t hadn’t had any in right eye just incredibly painful uveitis and steroids caused cataract but ironically optician sent me to eye infirmary for left eye threat of detachment but was PVD. A year later got some floaters in right eye so went to eye infirmary but they could not see detachment and said go back if it got worse (turns out cataract makes hard to see what’s going on) A few days was at weekend party in Wadhurst in Kent (where near mine ) land spider floaters and cobwebs. Ironically with French dr who said probably nothing floaters common at my age as if detachment was medical emergency !!! On the Monday headed back to London and still very worried so almost went to Moorlands but came home and went back – then told was detached in right eye. Had first operation, removed cataract and fixed 20 holes then gas but detached again then the oil. I keep looking for information about reaction to oil I in the cold and on Thursday it was cold. When it’s cold the oil seems to create an opaquel grey massive circle which breaks away from my gold/ black circle of oil and flies around my eye. The other oil disperss too in the cold so generally more demented in the cold 😊So I did a search on oil and cold and your blog popped up. Yes worried about left eye with the pvd again and constant white arc light / which we both call lava lamp light! This one had two horse shape tears and 1000 welds to hold in place so at risk again. I was freelance worker but had to give up so much work and lose income so was another massive stress as live alone so now part time employed as needed some stability. What about your ‘good’ eye. What’s the situation there? Melanie

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      6. ejb117 Post author

        Gosh – you really have had a nightmare time of it! I live in Kent! I guess you know that from the blog though! Unfortunately, a lot of people talk a lot of rubbish about floaters. Basically if anything is unusual in the eye, it should be checked out. What kind of work did you do before? Ah, yes, I have mentioned the effect of cold weather on the oil. For me, it makes my vision go cloudy, and then it gradually clears once I go inside and warm up again. I did ask a surgeon about it once but he didn’t know why it would do that. I’ve kind of got used to it now. Also my eye aches more in the cold. Ideally they’d like to take the oil out, but the question is whether the retina will stick or whether the PVR will just pull it off again. It’s a bit of a no-win situation, to be honest. If they take it out, I have the danger of another detachment and losing more vision, but if they leave it in it can cause complications. My vision in that eye is very bad now after all the detachments and damage caused. My ‘good’ eye had two large tears diagnosed at the same time as my original detachment. These were mended with cryotherapy and so far (touch wood) it’s been ok. However, I have lattice degeneration in both eyes and a bunch of floaters in my ‘good’ eye and a cataract. How often are you going for checks on the PVD? I’ve had six monthly checks for about a year now, I think. I have one coming up soon so I’m quite nervous about what they’ll find and say. Keep me posted on how you get on with the PVD, and fingers crossed for you! 🙂

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      7. Melanie Shee

        I am so sorry to hear about your situation it sounds so complex and a difficult place to be in I imagine. Good you are used to the effects of the oil. My eye aches and swells in the cold! As if last week I am now signed off but with retinal detachment warning in left eye as nothing more they can do but with instructions to go back immediately if any concerns etc. I did training / assessing / consultantacy in England and Scotland. What about you? How has work been / are you still able to work?

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      8. ejb117 Post author

        Hi – sorry for the delayed reply! Yes, it is really difficult as I feel I’m in a bit of a no-win situation. If the oil stays in, there’s always the danger of serious sude effects from it, leading to loss of vision; if the oil comes out there’s a high chance if another detachment, leading to loss of vision. ☹ And as you know yourself, it’s even harder to deal with it all when you also have problems in your ‘good’ eye, as we both do. Yes, there are all kinds if weird effects from the oil! What kind if training/consultancy work did you do? Hopefully your PVD will resolve and things will then settle down for you! I work at a university doing admin – so lots of computer work, which isn’t ideal.

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      9. Melanie Shee

        Yes I can see why it’s a almost no win but it’s good you haven’t reacted to it yet – my reaction was within a few days. It’s so so worrying too that your vision may get worse if it comes out. I terrible to imagine. Yes bad enough when it’s one eye but when your good eye is under threat it’s so so stressful. I work in education and skills focusing on the creative industries. Used to work in HE and link in closey with FE. Also assessesd apprentices. I now get retinal / optical migraines too. Do you ? I hope both of ourr ‘good’ eyes behave as couldn’t face more treatment although of course you do if you have too!

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      10. ejb117 Post author

        I hope so too!! I don’t get occular migraines, thankfully, butvi do get a lot more headaches than previously. I’m not sure if you’re on the Facebook support group, but keep me posted on how you get on! Fingers crossed! 🙂

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