Monthly Archives: March 2016

The dreaded removal of the patch

I’m not sure whether it’s a consequence of being plagued once again by pre-appointment paranoia (see https://rdramblings.wordpress.com/2016/01/24/pre-appointment-paranoia/ if you’re wondering about this) due to the fact that my next appointment at Moorfields is rapidly approaching, but the other day I found myself remembering the various dreaded occasions of eye pad removal following surgery.  I suspect that removal of another kind of iPad is likely to cause similar fear in some people; but anyway I digress…

The first time it was like a cross between a horror movie playing in slow motion and a miracle of literal enlightenment.  I was still in a state of shock following the emergency flight back to the UK from Berlin following my macula-off detachment and I could barely stand up upon waking from the general anaesthetic at the Royal Surrey County Hospital.  For this reason, I wasn’t quite as horrified as I’d normally be by the fact that I was taken down from the ward to the eye clinic in a wheelchair the morning after surgery.  However I was somewhat embarrassed to be seen wearing the dressing-gown I’d had since I was about 15 years old (which still fitted me at the age of 38, as I was then).  It had always seemed like a sensible idea to keep my comfortable old dressing gown at my mum’s house for emergencies, but clearly I hadn’t forseen this particular emergency.  Gone was the no-nonsense surgeon with the comforting Irish lilt, and I was seen by a Greek surgeon, who removed the eye pad and did a fair amount of peering into my peeper (I now know that he was checking my pressures, although at the time I hadn’t a clue) before he proceeded to put the fear of God into me by instructing me firmly, “You must be very careful not to get any infection – your eye is an open wound.”  Not being one to shy away from gore, I managed to shuffle to the toilet once I was back on the ward, and there held onto the hand basin for stability and peered gingerly into the mirror.  An angry red slit with yellowish crusty gunk smeared around it was visible where my right eye should have been.  Yet… and here comes the miraculous part… whereas a few hours previously I had seen mainly black through that eye, at that point I could actually see light.  I couldn’t make anything out, and I felt as if I was about to topple over at any moment, but at least the light was better than the terrifying black abyss of the detachment.

Eye pad removal following surgery number two was more a case of “I-can’t-believe-that-this-is-happening-again-someone-please-wake-me-up-from-this-nightmare-pleeeeeeeeeaaaaaaaaaaassssssseeeeeee!”  However, on the plus side, I’d been able to actually get dressed first thing in the morning so that I wasn’t seen in my childhood dressing-gown for a second time; and on the even more positive side it was the Irish surgon who came to remove the patch, and check out my buffeted and sleep-deprived eye.  This time I’d had silicone oil inserted, which was better than the gas in that I could actually see, but everything was incredibly blurry and I couldn’t read anything out of that eye.  Of course, there was also the return of the stabbing stiches pain, the constant aching, and the redness and disgusting eye gunk.

Weirdly, I can’t remember anything at all about eye pad removal number three, but the third surgery was performed at Moorfields and I do remember feeling a heck of a lot better upon waking up from the general anaesthetic.  Amazingly, there was also considerably less eye gunk, which was a massive plus and more than made up for the fact that I could have easily been mistaken for Frankenstein’s Creature a couple of days later when the bruising started to appear.

Eye pad removal following surgery number four still makes me shudder.  That was the surgery under local anaesthetic to remove the silicone oil, but as small detachment was found in the operating theatre, I ended up with gas again.  As the surgery was very early in the morning and done under local, I was packed off home the same day.  The following morning, my sister came to help me take the eye pad off.  I rapidly spiralled into nervous wreck status, quivering like an idiot in front of the bathroom mirror as I attempted to peel a bit of surgical tape off with shaking fingers.  “Do you want me to do it?”, asked my sister helpfully.  I just stared at her, nervously.  “Sit yourself down”, she instructed capably, indicating the toilet seat.  I obeyed, and sat in trepidation as she gently peeled away each piece of tape and removed the pad.  Foolishly, I took this from her and inspected it.  “Euuuuww!”, I exclaimed in disgust, before she retrieved it and placed it firmly in the bin.  I then busied myself with the task of examining my eye.  “Where’s my bottom eyelid gone?!”, I wailed, peering into the mirror in horror.  Weirdly, it had kind of turned in on itself, but fortunately a few wipes with cooled boiled water seemed to retrieve it.  Initial panic over, I was back to the by now familiar drill of redness, stabbing stitches, deep aching, and my old friend the gas bubble.  Oh, and posturing, of course.

Exactly two weeks later, I found myself sitting in Moorfields for yet another dreaded removal of the eye pad after further emergency surgery and another lot of silicone oil following the particularly devastating detachment number five.  This time, it was the nice Irish nurse who removed the pad.  I cautiously opened my eye to discover that the bizarre visual effects of the last detachment had thankfully disappeared, along with the remains of the tiny gas bubble.  However, I had developed horrendous double vision.  “This has never happened before!”, I cried in alarm, whilst pointing into the air and explaining, “I can see one of you here, and I know that’s the real you, but I can see another one of you there as well!”   “Don’t you worry – the doctor will check it in a minute”, she said calmly.  “How does it look?”, I asked her, hopefully.  “It looks a bit dirty, but I’m going to clean it up for you.”, she said cheerfully.  True to her word, she cleaned it up to the extent that by the time I managed to stagger to a mirror, although Frankenstein’s Creature stared back at me once again, he had at least had a good wash.  Fortunately, a few hours later I only had one sister again rather than two, and I was back to oily blurriness with considerably reduced peripheral vision, yet very thankful to be able to see out of that eye at all.      

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Marching for Moorfields: Eye to Eye!

After weeks of pestering our friends, family, and work colleagues to sponsor us in our grand challenge of walking 14 miles from Moorfields Eye Hospital to the London Eye on a very circuitous route, in order to raise money for Moorfields Eye Charity, the big day finally dawned.  Due to South Western Trains’ audacity in planning engineering work on the day of Eye to Eye, my sister and I had to catch a very early train to ensure we were at the hospital for our start time.  On the three previous occasions of catching a horribly early train up to Moorfields, two were for planned eye surgery and the third was for an emergency appointment which led to my fifth lot of eye surgery.  I therefore spent the first hour of the day feeling slightly sick.  “You’re-not-going-for-surgery-you’re-not-going-for-surgery-you’re-not-going-for-surgery-you’re-NOT!”, I silently repeated to myself.

My taut nerves only began to slacken somewhat when, upon arriving at Brookwood station, we noticed someone sporting an Eye to Eye t-shirt getting out of a car opposite.  “Look!”, exclaimed my sister in the most energetic tone of voice I’ve ever heard from her at such an early hour.  We’d no sooner clambered out of the car when our fellow Moorfields supporter was making a beeline for us, asking if she could join us as she was on her own.  “Yes, yes, of course!”, we agreed with alacrity.  We settled down on the train for the extended journey due to engineering works (grrrr!) and the time passed rapidly as we exchanged stories.  She had undergone squint surgery in 2008 and had suffered retinal detachments in both eyes, but Moorfields had worked their magic and she had finally been discharged in March last year.  She had taken part in the Eye to Eye walk in 2015 and had signed up again this year as a way of saying thank you to them for saving her sight.

Upon arrival at the hospital, we were issued with maps, tracking numbers, and much-needed caffeinated beverages.  After half an hour or so spent peering at the map and chomping at the bit, we were set on our way along with a large group of other walkers, whom we rapidly lost within the first few minutes.  Orange arrows were strategically placed on lamp posts and railings along the route, providing much-needed reassurance for those of us with absolutely no sense of direction and a distinct lack of map-reading skills.  After a confusing few minutes spent fighting our way through crowds of people in Camden Food Market, we came across a very friendly couple who lived in London.  “We must follow them – they’re local!”, I instructed my sister, after the trauma of getting slightly lost in the market.  Fortunately, there was no problem with this as we got talking and continued as a group of five for the rest of the way.

As we chatted, I learnt that one of our new walking buddies had suffered a retinal detachment in December.  He saw some flashing lights each time he moved his eyes and thought it would be nothing but went to Moorfields just to get it checked out.  He was disgnosed with a detachment and by the next morning (a Sunday!), he was undergoing surgery.  Fortunately the operation was a success, but it was clear how much of a shock the whole experience had been for both of them, and how grateful they were to Moorfields staff for their calmness and expertise throughout the whole ordeal.

We strolled past London Zoo, admired the boats in Little Venice, and continued plodding along the canal, only pausing briefly to explain our mission to a few people who stopped us to enquire with puzzled faces, “What’s Eye to Eye?”, or, on another occasion, “Excuse me, which eye are you walking from and to?”.  Eventually, we made it to the half-way point, where we were ticked off the list and rewarded with apples and jelly sweets.  (Other treats were available.)  Our walking buddies fround a wall where we were able to sit for a few minutes and take the weight off our feet.  The organisers at the half-way stop helpfully told us that we could find toilets either in Burger King just down the road, or in Hyde Park a few minutes further on.  Those of us who had already glugged down a fair amount of water went for the first option.  This was possibly not the best move, as the number of flights of stairs we had to climb in order to reach the toilets meant that the comfort of relieving our bladders was offset by the discomfort of increased aching in our thighs.  We reckoned that the extra steps probably added up to another half a mile and briefly considered texting all the people who had sponsored us by the mile in a bid to increase our fundraising totals.

We continued through a section of Hyde Park, past the Victoria and Albert Museum, Harrods, and then back into Hyde Park where we treated ourselves to a sit down on a vacant bench as we refuelled.  After being overtaken by the team of Nordic walkers in their Eye to Eye t-shirts as we sat in the dappled sunshine munching our sarnies and admiring the Spring bulbs, we thought we’d better get a jiffy on and so off we set once more.  We paused briefly at Buckingham Palace to see if the Queen was at home and then trudged on towards Trafalgar Square.  Once there, we were met by the chaotic scene of a St Patrick’s Day celebration in full swing.  We skirted around the hoards of people, dodged various green hats, and breathed a sigh of relief as we made it to the relative sanctuary of the streets beyond.

At this point we aquired a sixth member of our little walking group, in the form of an optometrist from Maidstone, who told me that she wanted to take part in Eye to Eye after having referred patients up to Moorfields for treatment.  This was the first time she had visited the hospital and so she was interested to have a look around.  We traipsed on through the streets, and all became very excited when we caught a glimpse of our final desination – the London Eye!  The excitement turned to wry dismay as we obediently followed the orange arrows, which directed us in a huge de-tour away from the London Eye and, crucially, away from the tea and cake which awaited us at the finishing line!  We ploughed on determinedly, spurred on by texts sent from a couple of people who had made it to the finish and informed us that red velvet cake was available.  We trudged past Big Ben and onwards to Lambeth Bridge, where there was an extended discussion about what exactly the song, ‘doing the Lambeth walk’ was all about and whether or not we should be walking in this manner across the bridge.  (Clearly, we were getting tired by this point.)  A few more steps and we made it to the Lambeth Pier, onto the Eye to Eye boat, and claimed our reward of tea and cake along with medals and certificates.  Yay – we’d done it!  🙂

Now, I don’t want to sound cheesy but the real reward was not the tea and cake, but the satisfaction of raising such a fantastic amount of money for a cause which is very close to my heart as a result of my ongoing RD journey.  My sister and I couldn’t have done this without the generosity of all the people who have sponsored us, and we’re incredibly grateful to everyone who’s been kind enough to do so.  The fact that taking part in Eye to Eye was such a huge amount of fun was just the cherry on top of the cake (the metaphorical cake, that is).  I hadn’t expected to enjoy the whole day as thoroughly as I did, and it was great to put a few faces to names as well as meet new people and hear their stories.

If you didn’t sponsor us but would like to donate, it’s not too late!  Please go to: http://www.justgiving.com/emseyes.  🙂

Eye2Eyelogo

‘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.  🙂