Tag Archives: Retinectomy

Visual fields

Living with peripheral vision loss can be a tad embarrassing at times.  It’s caused me to let out a loud girly squeal whilst using the photocopier at work, when the Dean (no less) suddenly appeared on my bad side, seemingly out of nowhere, and boomed “Good morning!” at me.  It’s resulted in me leaping a foot in the air and bashing my knuckles on the hand-dryer in the loo at work, when a student materialised out of thin air at the hand-dryer alongside me.  It’s caused me to berate my good friend when she spotted me in the distance one day and ran to catch up with me, grabbing my right arm as she did so and thereby scaring the living daylights out of me.  I frequently jump violently and then swear with equal violence under my breath when a cyclist whizzes past me as I walk along the paths on campus.  After stumbling over students’ bags in the entrance to my workplace on several occasions, I now walk round and use a different door if I need to enter or exit at the time a lecture is due to start or finish.  Last but not least, I’ve acquired some interesting bruises on my right shoulder due to various minor mishaps.

The loss of peripheral vision in my right eye is due to the 360 degree laser surgery which was done in an attempt to stop the retina from re-detaching and to try and save my central vision.  I suspect the three retinectomies (where part of the retina which won’t lie flat is physically cut away) probably haven’t helped matters, either.  Of course, unless people have actually experienced loss of peripheral vision themselves, it’s difficult to expect them to fully understand.  I thought perhaps a visual interpretation might help, and therefore sought the assistance of my personal patient photographer, who happily doubled up as a person with properly working peepers.  (It’s such a shame that the ‘h’ in ‘photographer’ messes up the alliteration there; however, I digress…)  Our highly scientific peripheral vision experiments when looking at the fields just down the road from my house, followed by extensive jiggery pokery with photo-editing software, led to the following results…

The picture below shows the complete field of vision of a person with properly working peepers, with both eyes open:

Fields

The visual field of someone with ‘normal’ vision.

The following picture shows the field of vision of both a person with properly working peepers and myself, when our right eyes are closed (so looking only through the left eye):

fov-res-w

Visual field of left eye.

The next picture shows the field of vision of a person with properly working peepers, whose left eye is closed (so looking through the right eye only):

fov-les-w-a

Visual field of right eye of someone with ‘normal’ vision.

The final picture (below) shows the field of vision in my right eye, with my left eye closed:

fov-les-w-e

Visual field of my right (RD) eye.

If you compare the last two pictures, you can get some idea of how much peripheral vision I’ve lost in my right eye.  If you look at these pictures in conjunction with the images in my earlier blog post, Do you see what I see?, this gives the most accurate representation possible of my waffy vision as it is at the current time.  So with that in mind, if you could kindly avoid sneaking up on me on my right-hand side, that’d be just grand…

Note: Grateful thanks to the patient photographer for producing these images for me and putting up with extensive peripheral vision analysis in the process.

 

 

 

 

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Oh silicone oil, I thought you were my friend… :-(

After my previous appointment at Moorfields back in July, when I was granted a six month reprieve from further surgery as my consultant believed it would be best to simply monitor my pesky peepers for a while, I practically skipped out of the hospital in delight and relief.  The six months whooshed by all too quickly and before I knew it, my next appointment was looming ominously on the horizon.  As the days passed, my nervousness grew and niggling headaches became a regular feature of my days; not helped by my job, which involves sitting at a computer screen for much of the day.  However, I told myself that hopefully all would be well and that with any luck they would simply grant me another six month reprieve.  So off I set for Moorfields on Monday morning along with my sister, both of us feeling fairly hopeful.

We descended to the clinic in the basement of the hospital, clutching cardboard cups of comforting tea, by now well accustomed to the forthcoming hours of waiting and people-watching through blurred, dilated eyes.  Strangely, most of the chairs were vacant, so we selected a prime spot which afforded us a look-out point to observe which consultants were on duty as well as being able to keep an eye on the whiteboard behind the reception desk, which at that time was predicting a two-hour wait.  I’d just got settled and started to blow on my tea when my name was called, causing me to almost drop the cup in surprise.  My sister and I looked at each other with startled faces and off I went for the first check with the nurse.  I was encouraged by the fact that I was able to slowly read the second two letters on the eye chart with my right eye, but my proud grin fell when the pressure check revealed a pressure of 24 in my right eye and 20 in the left.  Normal eye pressure is between 11 and 21.  During the stable period of the past year or so, the pressure in my right eye has varied between 17 and 19, so 24 was somewhat unusual.  Surprisingly, there wasn’t too much time to fret about it, as we only had to wait a few more minutes once the dilating drops had taken effect before I was called through to the consultant in record time.

Once again, I was asked the dreaded question, “How do you feel about having more surgery?”  Once again, I suppressed the urge to scream and hide under the nearest desk and instead admitted that I’m utterly terrified at the prospect of further surgery, but will do whatever they advise is clinically best.  Of course, unfortunately things are rarely that clear-cut.  As things stand at the moment, if they were to remove the oil, the retina would certainly re-detach.  So the plan is to remove the oil and carry out further work in the form of another retinectomy (i.e. cutting away part of the retina which won’t lie flat), more laser, sorting out abnormal blood vessels, and then either more oil or long-acting gas back in.  With the oil in, there’s less chance of a full re-detachment as the oil holds the retina in place and doesn’t disperse as the gas does.  For this reason, I love the oil.  It’s like my little security blanket.  But silicone oil in the eye also brings the risk of certain side-effects, such as high pressure which could then lead to glaucoma, emulsification of the oil, and scarring of the cornea.  These potential side-effects frighten me as much as the possibility of re-detachments, as it’s my understanding that ultimately they would also lead to further sight loss.

After examination, extensive discussion, and a further consultation with ‘The Prof’, it was decided that I should return in three months.  Although not immediately worried about the rise in pressure, both surgeons noted that it will need to be monitored and that they will need to take the oil out if it starts to creep up.  Of course, I’ve known about the potential complications of the oil for some time, so it wasn’t as if this was a surprise.  However, it was certainly a pretty major blow.  No longer is it myself and my silicone oil against the world.  Instead, it appears that my friend may be turning traitor.  So it seems that I’m once again occupying that most uncomfortable of areas, between a rock and a hard place, which I wrote about some time ago.  The only difference is that this time it seems likely that the issue will be decided by my pressure readings.  😦

“Words, words, words”…

… So said Hamlet in response to Polonius’s irritating query, “What do you read, my lord?”, but of course in true Hamlet style, there are multiple meanings beneath his ostensibly simplistic reply.  I find it quite interesting when I think about the different ways in which the experience of retinal detachment has affected the way I think about and use certain words.  On the one hand, there’s a whole new language of retinal detachment (or RD) in relation to becoming accustomed to certain medical terms.  For example: ‘macular-off’ means that the macular has detached as well (it’s pretty much as bad as it can get if you have a macular-off detachment, or ‘mac-off’ as it’s often referred to.  In case you’re wondering – yep, mine was ‘mac-off’.); ‘PVR’ is proliferative vitreoretinopathy, or what I think of as ‘bad scar tissue’; ‘cryotherapy’ is freezing treatment to essentially weld the retina back together; a ‘vitrectomy’ is the removal of the vitreous fluid or whatever has been put in to replace it, e.g. silicone oil; a ‘retinectomy’ is the procedure of cutting away part of the retina which won’t lie flat… I could go on and on…

On the other hand, many day-to-day words are used to describe certain aspects of RD and in using them in this way, a certain level of double-meaning is created and they aquire a film of either positivity or negativity.  For example, my fellow eye buddies will understand the feeling of dread conjured up immediately as soon as I mention ‘the curtain’, because that’s the word generally used to describe a detachment as it’s like a black curtain being slowly drawn across your vision.  Similarly, I can no longer hear or read the word ‘detached’ in general conversation without feeling slightly sick, for obvious reasons, so if you live in a detached house just keep that piece of information to yourself if you don’t mind.  Another classic is ‘bubble’, after having to deal with a long-acting gas bubble after my first surgery and a short-acting bubble after my fourth.  I’m somewhat frustrated that this will mar my enjoyment of the first appearance of the three witches next time I attend a performance of ‘Macbeth’.  Another word which now carries negative connotations by the truckload is ‘posture’.  Now let’s get this clear… I know I often sit with my shoulders hunched slightly forwards (a bad habit of tall people), but DON’T TELL ME I HAVE BAD POSTURE!  It brings to mind the hours and hours of lying face-down or on my side for days on end, which isn’t something I generally like to think about.  Reminding me simply to put my shoulders back, as my boss frequently does, is far more acceptable language to use.

On the positive side, I find there’s nothing more amazingly fantastically stupendously brilliant than being told that my retina is ‘flat’ or ‘attached’ or, along similar lines, my eye being described as ‘quiet’.  So these words have become associated with that glorious weightless feeling of relief when I want to skip out of the hospital and do one of those ridiculous little clicky-heels jumps in the air as I go.  [Note: it is inadvisable to indulge in this behaviour with dilated eyes.]

Since dealing with retinal detachment I’ve consciously forced myself stop using certain phrases I previously used without really thinking about them, such as ‘blimey’, which I was in the habit of using as an exclamation rather frequently.  I realised just *how* frequently when I decided I had to stop saying it.  As my Grandad used to point out to me, this actually means, ‘God blind me’.  Well clearly I had to lose this from my vocabulary immediately!  Another everyday classic is the casual, ‘See you later’, which I do still say but occasionally I feel a pang of anxiety when I think to myself, ‘But *will* I actually see you later?’.  I suppose a substitute would be ‘Catch you later’, or maybe ‘Talk to you later’.

Similarly, these days I’m very aware of the amount of times I say, ‘I see’, when I actually mean, ‘I understand’.  Along the same lines, it’s quite scary how frequently people joke about being blind when they can’t find something, or laughingly quip, ‘it’s like the blind leading the blind’ when in a situation where two people don’t have a clue what they’re actually doing.  I’m sure I used to do it myself, but these days it tends to make me wince slightly.  I’ve lost count of the number of times people have asked me what my next hospital appointment is for and explained, ‘it’s a check-up’, at which point they gleefully respond, ‘Ah, they’re keeping an eye on it, are they?’, clearly impressed by their quick-witted pun, which unfortunately I’ve heard about fifty times before.  I tend to just chuckle politely whilst inwardly rolling my eyes.  Recently, a friend caused amusement when the subject of my blog came up, by describing it as ‘a good insight’ into what I’m going through, befure realising the irony of using the word ‘insight’.  I’ll do my best not to analyse people’s choice of language too much though… after all, I don’t want to start going mad, like Hamlet did.  Hmmm… or was it really madness, after all? 😉

A Grand Day Out (…at Moorfields Eye Hospital?)

I decided I was going to bite the bullet and actually drive (BY MYSELF!) to Surrey in preparation for my appointment at Moorfields on Monday, so I was delighted when the day dawned grey and rainy.  Perfect conditions for RD patients.  Well, maybe the rain wasn’t so good, but at least the raindrops detracted from all the floaters in my good eye.  I set off in high spirits, enjoying the feeling of freedom from actually being able to make the journey on my own and not having to rely on anyone else or on public transport.  Being very sensible, I stopped off at the service station about half way there, and was mildly intrigued to hear a steel drum band playing as I drove in.   After a stretching my legs and resting my eyes for a few minutes, I set off again and was happily heading out of the service station and back onto the motorway when I realised that the steel band appeared to be following me.  In fact, either the band members had climbed into the boot of my car with their drums whilst I wasn’t looking or… it wasn’t a steel band at all.  It was at this point that the realisation dawned that my exhaust was rattling.  Great.  My first long journey after my last lot of surgery, and my ruddy exhaust decides to fall off on a very wet Sunday afternoon in the middle of the M25.  Well that’s just perfect timing.  After ranting away to myself for a few minutes, I decided that the only option was to adopt the same philosophy as I do with my eyes: keep going and hope for the best.  By the time I reached my destination, it sounded as if I was dragging a long string of tin cans underneath the car.  However, I cheerfully reminded myself that exhausts, unlike retinas, are easily replaceable.  The next morning, I drove it as cautiously as I could to the garage (bearing in mind that my sister was leading the way in her somewhat toned down Formula One driving style), and after this detour we set off to Moorfields, clutching my little eye book and taking bets on how many of my pre-prepared nineteen questions I’d manage to obtain answers to.

It was manic in the clinic – I’ve never seen it so busy.  The scarily grumpy receptionist said that it had been like that ever since my consultant had gone on maternity leave (I knew she shouldn’t have done that), and even the usually chilled-out friendly Irish nurse seemed a bit stressed, telling us after she’d administered the dilation drops that we may as well go back up to the cafe and get a cup of tea as she showed us the huge stack of files for patients in the queue before me. If we hadn’t already found the Moorfields geocache beforehand, we could have killed a few minutes by searching for that, although the dilated eyes would have made it a bit tricky.  Instead, we drank copious amounts of tea before heading back down to the clinic and waiting.  We debated passing some more time by playing a game of ‘I Spy’, but decided it wasn’t really appropriate.

Eventually, I was summoned through by a doctor I’d never seen before, but fortunately the surgeon who did my emergency operation at the end of May was there and so she called him over to have a look as well.  If I were to write a script of the eye examination, it would go something like this:

Ophthalmologist: “Pop your chin on there [indicating contraption] and rest your forehead against the bar.  Eyes wide open.”
My internal voice: “Please let it be okay, please let it be okay, please let it be okay…”
Ophthalmologist: “Now look straight ahead.”
My internal voice: “Please let it be okay, please let it be okay, please let it be okay…”
Ophthalmologist: “Look up.”  [pause]  “Look up and right.”  [pause]  “Look up and left.”  [pause]  “Look to the left.”  [pause]  “Look down and left.”  [longer pause]
My internal voice: “Please let it be okay, please let it be okay, please let it be okay…”
Ophthalmologist: “Look down.”  [pause]  “Look down and left.”  [pause]  “Look down.”  [longer pause]  “Look down and right.”  [longer pause]
My internal voice: “Oh ***** [insert expletive], what’s he seen?!”
Ophthalmologist: “Look down.”  [pause]  “Look to the right.”  [pause]
My internal voice: “Keep calm, keep calm, please let it be okay, please let it be okay, please let it be okay.”
Ophthalmologist: “And rest yourself back.”
My internal voice, wailing loudly: “What’s he seeeeeeeeeeeeeeeeeeeeeen?!”

I have an unwritten rule not to ask questions whilst my eye is being examined as I think it’s best to let them concentrate and save the questions until afterwards once they’ve scribbled the notes down.  However, I’ve somewhat unfortunately got to know the signs which indicate when they’ve spotted something which isn’t quite right.  Sure enough, he went on to tell me that my retina was ‘misbehaving’ at the top and starting to detach again.  I stared at him in dismay and launched into inquisition mode, doing my best to ignore my internal voice which by this time was screaming loudly, “NOOOOOOOOOO!”, along with various other exclamations which are best left to the imagination.  Luckily, he was as patient as he had been before my surgery, and calmly fetched a piece of paper and proceeded to draw a diagram to explain what was going on in my eye.  He seemed a bit embarrassed when my sister asked him if we could take the drawing away with us, protesting that he’d have done a neater job if he’d realised we were going to keep it, but he handed it over nevertheless.  He probably realised that if he hadn’t parted with it, I’d have insisted on copying it down, and this would have taken a considerable amount of time due to the inconvenience of the dilation drops.  (See below for my version of his diagram, attempted with the very limited resources available on my decidedly dodgy laptop.)

He explained that the retina was starting to detach a little at the edge, outside the line of the 360 degree laser.  This was what he had suspected may happen at the time of the surgery, which was why he had proceeded with 360 laser.  If the detachment remains outside the laser line, I should be okay, but if it encroaches beyond that then he told me ominously, ‘we have a problem’.  It’s never good when a surgeon says that we may have a problem.  He then went on to discuss potential complications of silicone oil in the eye, most of which I already knew, but there was one issue which was new to me.  Part of me feels the need to ask Dr Google all about it, but for now I’m exercising my will power (or possibly metaphorically sticking my fingers in my ears and singing, ‘la la la la’) and hoping that I won’t need to find out.  He ended by telling me that it’s basically a waiting game now, as we have to see how the retina behaves.  All this talk of waiting to see how it behaves, as if it’s a particularly naughty child, makes me want to whack it into place with a rolling pin but somehow I don’t think that would help matters.  [Note: I should add here that I’m not in the habit of whacking naughty children with rolling pins, although sometimes it is rather tempting.]

retina misbehaving

Note: 360 degree laser is when a line is lasered all the way around the retina, a little way in from the edge.  The laser causes a scar reaction which seals the retina down.  The surgeon described it to me as being like a thin line of superglue.  This explains why peripheral vision is lost as a result of 360 laser.  A retinectomy is when a small part of the retina is cut away and removed because it won’t lie flat.  This also explains the loss of some of peripheral vision.