Monthly Archives: September 2015

Stuck between a rock and a hard place

I had a check-up appointment at Moorfields on Monday, and it’s left me wanting to write in ANGRY, SHOUTY CAPITAL LETTERS AGAIN… possibly even BOLD ANGRY SHOUTY CAPITALS to emphasise my sheer frustration and desire to hurl everything within reach on the floor in a tantrum and scream at the heavens in despair, ‘I’VE HAD ENOUGH OF THIS NOW!’ (see if you’re wondering what I’m talking about regarding angry, shouty capitals), but after considering the matter, I reflected that italics might be more appropriate – being somewhat softer and more weary.  I can picture them as people leaning over sorrowfully, whilst softly sobbing into handkerchiefs.  However, as previously mentioned, normal sentence case is easier for people with visual impairments to read, so I shall endeavour to stick to the practical option.

The day started off pretty well – the sun was shining and we had a couple of hours to kill before trekking on the train up to London so I dragged my long-suffering sister out on a little geocaching expedition to make the most of the fine weather and take our minds off the impending appointment.  Three smiley yellow faces later, we rushed for the train and made it in just the nick of time.  Upon arrival in the clinic at Moorfields we were somewhat taken aback at how manically busy it seemed, but we managed to find seats and settled down for a long wait.

We were just starting to get bored when the nice education lady approached and asked if I’d be happy to volunteer again for the medical students.  (It’s worrying when you find yourself getting recognised by increasing numbers of staff at each visit.)  I agreed with alacrity, partly because it’s actually quite interesting listening to the medical students as they use me as a guinea-pig, and partly because I’m very aware that they have to practise on people to learn and one of them might even be treating me one day in the future.  It wasn’t so great having four doses of bright lights shone into my eye one after the other, but that’s a minor down-side.  First the tutor had a look to check what the students should be able to see, and then the students each took their turn.  The first guy seemed pretty nervous as his hand kept wobbling, but he managed the examination without too much trouble.  The girl who had a go next couldn’t make anything out and had to try twice (ah, make that five doses of bright lights), but it was worth putting up with the light just to hear her excitedly exclaim, ‘Oh yes, I see the vessels!’  ‘Okay, now track them back’, the tutor calmly directed, obviously trying to keep her focussed as she seemed in danger of leaping up and whooping in delight.  ‘There’s the optic disc!’, she declared, sounding much more confident about the whole thing by that point.  After bright light number five, there was a small discussion about what they should have been looking for and what they actually found, and I was delighted to hear my left optic disc described as ‘normal’.  That’s an adjective which isn’t generally used in relation to my eyes.  After choruses of ‘thank you!’ from them, and ‘good luck!’ from me, I stumbled back to the waiting area as the various flashes from the bright light subsided.

We waited, and waited, and checked the time, and then waited some more.  The seats slowly emptied until we had our pick of almost any chair in the waiting area.  We noticed that the grumpy receptionist had left, and some of the nurses had their coats and bags ready to go home.  I voiced the possibility that they’d left me until last because they knew how many questions I was likely to ask, but we decided that it really didn’t matter as long as the questions were all answered.  Eventually, the locum consultant came out and called me in, apologising for the delay.  He examined my right eye (the bad one), then wrote a few things down, and told me he was going to examine my left eye as well.  ‘Excellent’, I thought, feeling relieved that I wouldn’t have to ask him to do that as well as is sometimes the case.  I wasn’t feeling quite so perky about the whole thing when he took rather a long time in checking out my left eye and then asked me to lie down on a bed so that he could get a better look, along with a head-torch and what I can only describe as a metal cocktail stick type implement.  When I (somewhat foolishly) asked if everything was okay, he told me that he thought there might be a tear in the retina.  By this time, my heart was pounding, my hands were starting to shake, and I had already fast-forwarded to the operating table in my mind’s eye.  He put what felt like a shower of anaesthetic drops into my eye and explained that I’d feel some pressure and discomfort.  He angled the cocktail stick down the side of my eye and seemed to be prodding and pressing it to move the eyeball around and get a better look.  I lay there, gritting my teeth for as long as possible, thinking that it was better to let him get a proper look at what was going on than have to admit that it was actually hurting quite a lot and cause him to potentially stop looking.  After more prodding and poking, another examination back on the chair, then down on the bed, then up on the chair again, he said there didn’t seem to be a tear, but there was lattice degeneration, which would be ‘watched’.  All this time, I was trying to keep the shaking under control (it’s difficult to do as instructed and ‘stay still’ when in a state of panic and shock) whilst wailing internally, ‘Oh [insert expletive], not my good eye, not my good eye, NOT MY GOOD EYE PLEEEEEEEEEEEEEAAAAASSSSSEEEEEE!’.

After that, he proceeded to tell me that the slight detachment in my bad eye beyond the laser line has increased a bit.  I’d been suspecting this, after experiencing some flickering in a different area of my eye for a few weeks, but I’d been hoping this wasn’t the reason for it.  Next, he terrified the living daylights out of me by discussing the possibility of removing the silicone oil again, explaining that because I’m still young they would ideally like to try taking it out.  Leaving it in can cause all sorts of complications, including high pressure, glaucoma, calcification of the oil, scarring of the cornea, and apparently also a potential problem with blood vessels because the area which is currently detached is being starved of oxygen  which means that it could cause abnormal blood vessels to grow and in turn cause glaucoma.  This was the first I’d heard of that particular complication and I’m still somewhat confused by it so it requires further research.  If they take the oil out, there’s the danger that the retina will re-detach yet again and all the horror which goes along with that.  If it detaches again, he said they’ll just put the oil back in and then leave it in.  But then what about all these horrendous complications of leaving the oil in?  I started to ask more questions, but he’d already spent quite a while with me and it was very late by this point.  He ended by suggesting that I think about it and return in a month, at which point I presume a decision will have to be made.

We emerged into the rapidly darkening London street, and my sense of feeling like a trapped animal with the ‘damned if you do and damned if you don’t’ scenario wasn’t helped in the slightest by having to negotiate escalators and stairs with dilated eyes at the height of rush hour and then cram myself onto a packed tube train.


Stalking the Surgeons

Okay come on now, admit it… any of my eye buddies who may be reading this: how many of you have googled your consultants to check that they really do know what they’re talking about?  Ha!  Yep – I suspected as much… it just has to be done, doesn’t it?!  I googled my first consultant after my initial surgery, and was fairly encouraged by what I found – the results of which included several articles containing high praise from patients whose sight he’d saved, and the fact that he’d completed a fellowship at Moorfields Eye Hospital in London.  A few months down the line after my second lot of surgery, when he told me he was referring me to Moorfields for a second opinion, my confidence in his abilities was starting to waver a little, but I was encouraged by the fact that he was sending me up to ‘the big guns’ and so proceeded to crack on and google with gusto the consultant he was referring me to.  ‘Excellent!’, I nodded to myself with satisfaction when I discovered that she had a research degree specifically in PVR as well as a large number of publications concerning PVR and the use of silicone oil in retinal detachment surgery.  I attempted to read a few of her articles, confused myself thoroughly by most of them, but calmed my nerves by deciding along with my sister, who had also been making use of Google’s services, that she had ‘a kind face’.

I was somewhat perturbed, therefore, at my first Moorfields appointment, to be confronted not by the kind-faced lady expert in PVR, but a MAN.  However, he proceeded with the usual examination (see halfway through the following post, if you’re wondering what this entails:, and then at the end noted that I was supposed to see Miss X, to which I replied, ‘Ah yes, I was going to ask you about that.’  ‘I’m not her’, he said, with a perfectly straight face, before explaining that he was her Fellow (I shall refer to him as ‘Mr C’) and that I would have to return a few weeks later so that Miss X could confirm she was happy with the proposed surgery to resolve the PVR issue.  Once I realised that he was going to perform the next lot of surgery, I indulged in further googling, and was heartened to discover that his publication record was pretty extensive as well.  That, together with the fact that he patiently answered pretty much ALL my questions each time I saw him, without giving any airy fairy answers, made me feel much better.  This man was going to fix my eyes – I was sure of it!  My certainty was increased when he told me with calm confidence at a follow-up appointment after my ‘oil change’ surgery in January 2015 that he was ‘optimistic’ and although he couldn’t say for certain, he ‘thought everything was going to be okay’.  He still thought everything was going to be okay after discovering and fixing a small detachment when he removed the oil in May 2015.

Fast-forward to exactly two weeks later when I was sitting with my sister, waiting to have my eye pad removed after emergency surgery by a different surgeon the previous day to re-insert oil after the retina had spectacularly detached again, and we spotted Mr C striding through the room before disappearing again through another door.  As if by magic, he reappeared just as the nurse was about to remove my eye pad.  ‘Did she have surgery yesterday?’, he asked, sounding shocked.  My eye may have been cut open (again) but my tongue was still firmly in my head and I was perfectly capable of speaking for myself so I answered, ‘Yes!’  ‘What happened?’, he asked.  ‘It detached again!’, I all but wailed back.  ‘I’ll come and talk to you in a minute’, he promised, before darting out of the room once more.  When he had  failed to reappear over half an hour later, the nurse suggested we confiscate his bag, which he’d left in a corner of the examination room, so that he *had* to come and talk to me again.  If I hadn’t been experiencing horrendous double vision at the time, to the extent that just getting from one side of the room to the other was a struggle, I’d certainly have taken her up on this suggestion.  However, to be fair, I don’t think he’d legged it – I think he’d been called into surgery.

Stalking the surgeons has consisted of more than simply googling them and considering holding their bags to ransom, although I haven’t quite reached the stage of finding out where they live and chaining myself to the front gates with a sign saying ‘I’ll only move on if you fix my eyes first’, although this idea is becoming increasingly tempting.  When I had to make a return visit to the hospital in Surrey because of high pressure issues and there was some doubt over whether I’d get to see the actual consultant, my sister marched us both over and bagged the seats directly in front of his door, with the cunning plan that he couldn’t very well pass me onto someone else if we were parked right there.  Her plan worked.  Another time, I became ever so slightly worried about my sister’s stalking tendencies, when I received a text message from her one evening instructing me to, ‘turn the TV on – it’s Masterchef at Moorfields!’.  Unfortunately for my sister, the first thing I read was her second text message, which said, ‘Mr C might be eating their food!’, which made me wonder exactly what kind of stalking she was partaking in.  After receiving another excited text from a work colleague, I reluctantly fired up the haunted fishtank (I don’t watch TV very much anyway, and watch even less these days) to indulge in a game of ‘spot the Moorfields staff on Masterchef’.  We saw the nice Irish nurse, and my consultant’s secretary, but that was about it.  It was quite a fun game though, and at my next appointment I had to restrain myself from telling the nice Irish nurse that we saw her on Masterchef (she was a bit stressed that day, as it was very busy).

It’s now just over a week until my next appointment at Moorfields, and I’ve been deserted by Miss X who’s on maternity leave, and Mr C, who’s left for another job.  However, I’ve managed to find out the name of the new locum consultant and have been rather busy on Google…