Having had Keratoconus for ten years, and as the cornea has continued to steepen throughout those years and as I have had a Corneal Hydrops as well, my experience takes a while to explain. It is geared to be as comprehensive as possible as I have gone through most stages of the condition and have made plenty of mistakes you can learn from and found some priceless nuggest of information you can use for yourselves. To help you navigate, I have split the page up into stages and you can click on any of the stages listed below to jump right to that bit. Or you can read it all in one glorious go. I hope it proves useful to you!
Stage One: Diagnosis
Stage Two: Soft Contact Lenses
Stage Three: Problems With Soft Contact Lenses
Stage Four: Soft/Hybrid Lenses
Stage Five: Rigid Gas Permeable Lenses
Moorfields Eye Hospital
Stage Six: Corneal Hydrops Part One
Stage Seven: Scleral Lenses
Stage Eight: Scleral Lenses Plus Glasses
Stage Nine: Corneal Hydrops Part Two
Stage One: Diagnosis
I was diagnosed with Keratoconus when I was 17. I’d had a bit of trouble seeing the blackboard at college for quite a while and had gone for an eye check-up at the local opticians, thinking I was a bit short-sighted. This appeared not to be the case as, without explaining why, I was then sent to the eye department at the local hospital where I spent a long morning doing tests. The verdict was given to me by a kindly old doctor who asked me if I wanted the good news or the bad news. Feeling I needed some sugar for the pill, I went for the good news.
“You don’t have to wear glasses,” he said. And he smiled. I smiled too. Then he stopped smiling.
“Bad news is you have a progressive and degenerative corneal disorder called Keratoconus.”
I stopped smiling.
Obviously, I didn’t have any idea as to what Keratoconus was. I had never heard of it, neither had anyone else I knew. The doctor described it as having an eye like a rugby ball instead of a football. In those early days, my cornea was only beginning its journey, but now I can see how apt a description this is.
He restricted his explanation to this rudimentary level, though he added that the condition was relatively rare. So, with that, and aside from asking the now oft-asked “Does anyone in your family have it?” (the answer being no, but Moorfields are currently trying to isolate whether there is a genetic link, for more details email me), he packed me on my way. Looking back, a detailed description of how the Keratoconus would possibly progress, and the complications involved in that, might have been useful. But Keratoconus is unique to each person. It may never get steeper than a light incline, so why worry a 17 year-old boy with talk of corneal transplants? I was happy with my basic explanation. Ignorance, after all, is bliss.
Stage Two: Soft Contact Lenses
I was referred to a local optician, Colin Peet, who was based in Cosham, Portsmouth, and it was here that my ‘treatment’ was carried out for the next few years. This practice of private opticians doing NHS work is, as far as I can tell, very common. Going to a local optician is, after all, much less hassle than travelling to the local hospital and hospitals themselves tend to be slow and unfriendly places.
At Colin Peets’ I had my cornea mapped by a machine that measures the corneal topography (its shape), which regurgitated a receipt with my eyes’ vital statistics printed on. My left eye was much more advanced than my right (more of which later). It is normal for one of the eyes to be further along the road like this.
It was decided that soft lenses would be the best option at this stage. These are relatively large compared to the common lenses supplied for short/long sightedness and are not hard but squidgy and squashable.
When they arrived, I spent a good few hours trying to get them in and out of my eyes. Being slightly squeamish and having never touched my eyeball before, it was the getting out that I had most trouble with. It was something that took a few weeks to get totally used to, but like every other stage of my Keratoconus, after the initial difficulties it become second nature very quickly – no matter how much of an impossibility that seems sometimes. Perseverance is key.
Stage Three: Problems With Soft Contact Lenses
So, I was supplied with my first set of lenses. A soft pair that you could squidge and squash and pretty much abuse to your heart’s content. They corrected my vision and I didn’t have too many worries. Until I lost them. At 17 and 18 years old, it is very easy to lose your lenses. Alcohol, alas, is the main factor. I lost my lenses a lot.
But other factors were also affecting the success of the lenses. They tore very easily. This meant you could walk down the road and suddenly half your lens would flap out like a door opening – more of a shock for those watching and thinking your eye was peeling off than you yourself.
A healthy dose of Hayfever also ensured I rubbed my eyes a lot. This not only increased the occurrences of tearing, but also encouraged infection. It is not until a dose of conjunctivitis has robbed you of your lenses that you realise what a pain, and how debilitating, not being able to put on a pair of glasses can be.
All this turned out to be a useful learning experience. I see these first lenses as my “Welcome to Keratoconus” lesson. You see, my eyes were not content at a gentle incline. Rather, they were intent on hurtling as quickly as possible to the Mont Blanc of steepness in terms of the curve of my eye. For two or three years, my prescription changed every two months. The staff at Colin Peet’s surgery and I became firm friends, exchanging Christmas cards and bringing back presents from holiday. (Indeed, having played a rather aggressive game of football in the South of France, I rang them from my holiday with a plea to send out a replacement lens for one that was no doubt now wedged onto the bottom of someone’s trainer).
You can’t go on changing prescription every few months for very long. And it became clear that the soft lenses quickly became unpractical. They didn’t give me the right standard of vision and they were doing nothing to halt the march of the degeneration of my cornea.
Stage Four: Soft/Hard Hybrid Lenses
Hence, I moved to a soft/hard hybrid lens: a hard lens centre bound on to a soft lens skirt. These were trickier to put in and take out, and they required a much more delicate touch, but they were just as comfortable. The main problem was that the bind between the hard egg yolk centre of the lens and its soft skirt was liable to tear. Which it did fequently. However, it was with these lenses that the condition began to slow slightly and my visits to the optician became less frequent.
They lasted me throughout university. Not one pair, you understand, for drinking and the lens’ propensity to tear along the binding line (an extremely painful occurrence where the cornea is pinched by the soft and hard lenses where the binding has come apart) meant I had many versions of my lenses. Also, my eyes had by no means given up on their steepening ambitions, so there were plenty more prescription changes with them becoming steeper and steeper lens fittings.
A note here, I think, about conjunctivitis. It was at university that I had my worse bout of the horrible thing. Unfortunately, due to the reliance on lenses, it is something the Keratoconus suffer has to endure. But in my first year of university, I got a particularly bad bout. Your eyes get stuck together, your vision deteriorates and white stuff gets glued to your lenses.
The doctor gave me eye cream. At 4am the next morning, I awoke to the most horrendous eye pain and aversion to light of my life. It was horrible. Four hours later I was sitting in the hospital looking like someone had taken aim at my eye with a particularly large fist and punched me with all the skill and power of Muhammed Ali. It was swollen to the size of a plum. “It’s an eye condition,” I kept repeating to disapproving glares. “I didn’t get in a fight”.
It turned out, the doctors thought, that I was allergic to the conjunctivitis eye cream. Some steroid drops and a couple of days rest and it was back to normal.
The lesson, I suppose, is to make sure your hands and your lenses are cleaned thoroughly. You can get a no-soap alcohol gel that kills bacteria from Boots, which I recommend you carry around with you for your hands in case your lens does a sky dive on the train or other such inconvenient places. You just rub a bit into your hands until it evaporates off and you are clear to cleanly touch lenses and eyes. A small bottle of saline to clean the lens is also a good idea. Aside from that, just make sure you clean your lenses thoroughly each night and clean your lens container each week. Also, since getting Scleral Lenses (see later in this tale), protein removal tablets have become a lifeline. I dunk my lens in saline infused with these tablets on average once a week.
Stage Five: Rigid Gas Permeable Lenses
When I was 23, my eyes started getting a bit rubbish again. By that I mean I was waving to people thinking they were who they weren’t. My vision was plummeting. I went to the opticians, a new one after the legendary Mr Peet passed away, and was told that the hybrid lenses were now not good enough. I would now be moving to a very small and rigid corneal lens (RGP) that would sit upon my conical cornea like a plate on a stick in a circus balancing act.
Unsurprisingly, my first attempts at putting these in resulted in the lens being catapulted by my eyelids across the surgery room. It took a long time to get the right measurement – we are talking a good 30 minutes in the opticians chair, trying endless lenses that were kept in a large briefcase – but when I did, I found that my vision was extremely good. Apparently, they flatten the cornea slightly, hence giving you better vision.
Initially, they were uncomfortable. They feel like you have dirt scratching your eye ball. But, as with most contact lenses, the discomfort soon passes. And I was unconcerned, anyway, as I loved them. I had sight. And I thought it was all sorted.
Moorfields Eye Hospital
It wasn’t. A chat with the head of the Portsmouth Eye Department arranged to assess the condition of my cornea (it was a regular appointment rather than anything particularly wrong) got me a referral to Moorfields Eye Hospital in London and the news that I was “probably on route to a corneal graft”.
That was a fun day, believe me. A corneal graft had been mentioned by most of the people who had looked at my eyes over the previous years. My age, the rate of the curve steepening, the scarring caused by the stretching of the cornea as ir gets steeper and the advance of the condition, it all suggested that a graft was a possibility. But this was the first time it had become a concrete slab of reality. And I was, if you excuse the phrase, shit scared.
Moorfields is a dull-looking place. Depressing even. Old people staff every corner offering overpriced drinks. Fortunately, it is also one of the leading eye hospitals in the world.
I have had good experiences and I have had very, very bad experiences at Moorfields. The skill of the doctors is unquestionable, but there is no consistency of treatment. If you are not forceful about your treatment, you see someone different each time, and each person has a different idea of what should be done. Hence, you can swing from despair at having to have a transplant to the jubilation of a new set of lenses that correct your vision in the space of two appointments. I am lucky that, for my lenses at least, I am now regularly seen by the same doctor. For my cornea appointments, however, it’s a different person each time.
The administration side is also extremely slow and the bureaucracy can be frustrating and incredibly inept. But the system, not the staff, is generally the problem. These are busy people yet all are pleasant and friendly if you are pleasant and friendly to them! A frequent feeling is also that they don’t understand how you feel or what it is like. They can seem to downplay the seriousness of your condition and feel that it is fine to be blind for a week or two while you wait for an appointment. Don’t take it. Demand treatment. Don’t feel you are being bolshy: it is your eyes and you need to convey the seriousness of the situation. Once they are persuaded, you will find that things move quickly. Likewise, though, do not bother them with small complaints that you know the cause of.
Lastly, if you find a doctor you feel comfortable with, make every effort to ensure you see that person again, be forceful! Also, remember that no-one knows your eyes better than you, so if you keep schtum and don’t tell them anything, they are not going to be able to help you as much. Tell them everything, no matter how small. I mentioned once about seeing better with sunglasses and the doctor then spent the next hour researching what level of tint brought the best results. It’s worth opening your mouth, as well as your eyes.
Stage Six: Corneal Hydrops Part One
One winter morning, I put my lenses in, and found that I could not see out of my left eye. It was very misty, like a looming cloud in front of my vision. I was not too worried: it had done something similar before with conjunctivitis. But I decided that, to be safe, I would take myself to Moorfields Eye Hospital and let them have a look.
“Corneal hydrops,” the nurse said to me.
“Brilliant,” said I.
I had no idea what she was talking about.
“You have a hydrops,” said a tired and grumpy young doctor.
“What’s that then?” I asked.
“Hmmm,” he said. And he turned to his computer and started searching Google. Not the most confidence-inspiring move.
“You’re going to have to have a corneal graft,” he said, nonchalantly, as if he was telling me he would get me a cup of tea. He then gave me some steroids and packed me off.
It was perhaps one of the most appalling experiences of care I have had at a hospital. No information was given and the doctor was so off hand and grumpy that by the time I left I was more angry than worried. It was only thanks to my own research and then the much more professional conduct three weeks later of the corneal surgeon and consultant at Moorfields, Mr Larkin, that the full details emerged.
My cornea had split, fluid had poured between the cornea’s layers, my eye would be a white globe (for the pupil was now missing in action behind a hazy white cloud which covered my eye) for several months, a year, maybe for life, and my vision would be severely impaired. I also could not wear a lens on the eye.
Excellent, I thought. But search around the internet and you learn that it isn’t all bad. A corneal hydrops is a random occurrence that happens from time to time in advanced Keratoconus. It can actually be beneficial as when it heals it can flatten the surface of the eye. And it does heal, eventually. It is just a very, very long process.
For me, I would notice no change for around two months, then my eye would hurt for a few days and at the end of those two days I would notice a change. This has continued since (it is February 2011, four years after the incident, and still it changes). As far as pain initially was concerned, you are meant to get a lot. But I felt very little discomfort sporadically, generally I felt no pain at all.
The problem is where the final scar positions itself. If it is off the centre of your eye, then you are very lucky and will probably have a better and less steep eye than before. My scar rested to the bottom left of my pupil.
For the first couple of years, my vision in darkness was great and my vision in bright sunshine appalling. After two years, things changed. My eyes become stupendous in bright sunshine and awful in darkness. Keratoconus is a funny thing.
And, in all honesty, living with one eye was not too much of a drag. I couldn’t drive, sure, and it was far from ideal, but my right eye performed well and my left eye recovered steadily. That said, now my right eye has deteriorated in visual terms, the loss of my left eye would be much more debilitating.
Stage Seven: Scleral Lenses
It was around six months after the hydrops that my right eye began catapulting my right lens out of my eye once more. And generally at the most inappropriate of times, including once at London’s Waterloo station as I ran for a train. Dehydration had made my eyes dry and hence as I looked up to see the train time the lens jumped out never to be seen again. I was still not wearing a lens in my left eye at this time due to the Hydrops. Hence, the world was a messy blur.
This was one of the lowest points I think during the course of my time with the condition. You try and not let it affect your life but sometimes it steams its way in anyway. You have to have your mope for 5 minutes, talk to someone and rage against the unfairness of it, then pick yourself up and get on with it. There are frequent low-points and frustrations with the condition, but you have to just battle through them. Keep upbeat, it could be worse!
So, with the lenses not working, I eventually got an appointment at Moorfields, with a new doctor once again, and she ummed and ahhhed for a very long time. She then said:
“Have you thought about scleral lenses?”.
Erm, no. Mainly because I had no idea what she was talking about. But I was prepared to give anything a go rather than having the dreaded operation to give me a new (dead person’s) cornea.
I was led to a little bay with a man called Ken Pullum sat in it. Ken has turned out to be a bit of a legend. He fitted me with two lenses that were the size of two spherical 50 pence pieces. The old, fifty pence pieces. They cover my WHOLE eye. Scary, yes, but these lenses have been about for many, many years, but no-one really knows about them. They sit on the sclera (the white bit) of the eye and do not touch the cornea at all. Instead, there is a large gap which you fill with saline solution. So your eye basically has a bath for the day.
I got measured up by Ken, well I say measured up, he took a look, tried a couple of lenses and got a perfect fit. By eye. It was remarkable and shockingly quick. Two months later (I told you they were slow) I went back and Ken plonked them in my eyes, no trouble. Well, he grabbed my head, put it between my legs and shoved the lens up into my lower lid. So not quite no trouble. I sat back up, though, and I could see the letters on the board clearly. They felt awesome. This was one of those times I left Moorfields a happy man.
You have to increase your wear of scleral lenses very slowly. An hour day one, two hours the next and so on. The trouble was, I couldn’t even get the little bastards in. With these lenses, you have to fill them with saline solution, then bend down and ram them in your eye without any bubbles getting in. At the time, this proved impossible. On my 20th attempt I would still raise my head and see a happily bobbing bubble float across my vision. I quickly became depressed, angry and inconsolable. But I persevered. (For more on this see the Scleral lens tab above)
Eventually, with practice that included my girlfriend videoing me putting them in, I established that I was rocking too far forward and pouring all the saline out before my eye even got near. Instead, you have to keep your hand rock solid in position and bring your eye to the lens. I mastered the art, eventually. . And for a few months it was bliss.
I went to see Mr Larkin again a few months after getting my scelral lenses. He had a look at my eyes, my scar in the left eye, and sat back. He gave it to me straight. If I was 35, he would not recommend a corneal graft. My eyes would not change any more at that age, and I was surviving comfortably with my scelral lenses. But at 25.,, it was likely my eyes would get steeper. I had a lot of scar tissue. I was young and healthy, so an operation would not be too taxing. I could have a corneal transplant if I wished. How long? I could have one in two months time if I told him now I wished to go through with it.
For a transplant, they cut out a ‘button’ (a round section) of your cornea and insert a donated cornea of the same shape. There are many methods of doing this, which I explain more in the corneal transplant section of the site.
I was surviving ok as I was, and did not see the point in getting a dangerous transplant when I was working, living, and pretty much seeing ok. Also, if a hydrops were to occur in my right eye (very unlikely, but possible), I felt I could ‘survive’ vision wise until the scarring settled down and I could see what I was left with. Not perfect, but ok. I took a month to think it over. I decided it just wasn’t worth it and I would regret it. I am now determined to stay with the lens options until there are no options left.
Stage Eight: Scleral Lenses Plus Glasses
Then, in November last year, I started to get bubbles floating into my right eye at regular intervals throughout the day. This would be followed by my vision clouding over and big deposits of yellow/white sticky protein build-up sneaking to the corners of my eyes and under the lens (the cause of the clouding). Note that this clouding was only present with the lens in. And when I replaced the saline solution it disappeared. So it was not a hydrops or something else! Just murky saline solution.
I didn’t know this at the time, I went to Moorfields A&E and was told it was an infection. It wasn’t. My lens was now ill-fitting and irritating my upper eye lid. My eye was getting extremely sore and a rash appeared on my upper lid from replacing the saline in my eye every 30 mins. This was extremely frustrating.
So I went off to Moorfields for a new fitting. A slightly smaller scleral les was thought a better option (about the size of a 20p) and I waited hopefully for its arrival. I waited for a few weeks, went in to get it, and found that I could not see anything, though it was a very comfortable fit.
A trip to Ken confirmed my eye had changed and it looked like, despite the fact the new lens fitted superbly, it could no longer correct my vision. I needed a refraction. Best thing to do that? A pair of glasses in front of my lenses.
Several measurements at a local opticians later and I got some glasses. I put them on. And immediately felt like I had drunk ten pints of extra strength lager. Something was up. The optician said to sit it out. I did. I was sure they were wrong. I went back to Moorfields.
The refraction clinic fitted me in and I was soon sat with those attractive optician’s glasses on my face. A few tweaks and suddenly the world was a clearer place. A few weeks later, the glasses arrived. I put them on. VISION! It wasn’t a massive improvement, but it was enough to make computer work and general vision a hell of a lot more pleasent.
Stage Nine: Corneal Hydrops: Part Two
It was the thing that only ever happens once. Two eyes? Both eyes? No, it’s rare. Very rare. Don’t worry about it.
I woke up at a friend’s house in Bristol. Miles from home. Something wasn’t right. I couldn’t see a lot out of my right eye anyway. But now, well, it seemed even more distorted. I decided to put my lens in.
And there it was. A mark on the lower right of my vision. I’d seen this before. Hydrops. Again. First the left eye then almost exactly two and a half years later it hit my right eye.
That first day, the Sunday, there was no pain. I put my lens (scleral) in all day. The mist which started in the bottom right seeped into the rest of the eye. By the evening it covered my eye. The Monday came.
Monday was horrendous. The pain was extreme. The eye was swollen, light sensitive and stinging like I’d never experienced before. We got the tube, me and my fiancé (now wife), to Moorfields. I sat in the waiting room with two ton of liquid pumping out of my eye and the pain nearly breaking me. Then I saw the doctor.
He first put in a drop, I’m not sure what it was, that took away the pain. It was bliss. It was temporary. He then put in a drop to paralyse the eye muscles so they would not try and focus, causing pain. My pupil became the size of my iris as a result. (It was meant to last 24 hours, it was still diluted four days later, but I am told this is common).
He then prescribed me a number of eye drops and that was me. Come back in a week. We’ll see how you are.
Well after five days the difference between this hydrops and the last one was a marked one. Firstly, the second had pain, the first did not. Why this is I have no idea. The second it had not yet not filled the eye as fully as the first, the white globe is less. It was more of a haze than thunder clouds. And lastly, my vision appeared to be getting better faster in my right eye than it did the left. I’m talking minor improvements here, but improvements still. Day two I saw nothing but light and dark. Day five I could distinguish between objects.
The first month following wasn’t too bad, the steroids (Predsol) and Sodium Chloride drops seemed to keep everything in control. But after a month, they took me off these, and, well, oh dear.
The pain was quite debilitating. But I struggled along at work anyway. I filled bucket bins with tissues as my eye refused to let up its constant watering. People have become accustomed to seeing me with my eye squinted shut or with my fingers over the top of it. I thought the problem was being exacerbated by hayfever so didn’t bother telling the doctors how much discomfort I was in.
Until about another month had passed and I could take it no longer. I rang Ken at Moorfields (London) who said he’d see me the next day. He took one look and saw that something was not right. He found the largest scleral lens he could, stuck it in, and the pain cleared almost instantly. Over the next half hour there was no discomfort at all. Lovely.
But he wanted to run the solution passed the doctors so it was over to see Mr Larkin, the consultant in corneal disease. He had something interesting to say.
Turns out the tear in my right eye is one of the worst they have seen. Ever. I was, peversely, quite pleased I was notable at least and my discomfort was not down to my own weakness (I had always considered myself good with pain). He wasn’t keen on the lens solution, however, so he suggested going back on the steroid drops.
Hence, I had two options. I decided to give the steroids a go first as the risk of a lens was capillaries growing into the cornea and making any future transplant more complicated.
It took almost a week and a half, but the pain began to subside and I am now almost pain free.
Some things I have learnt: the pain was, and still is to a degree, always worse in the morning. This could have been down to two factors as far as I can tell. Me rubbing the eye in my sleep (which I almost certainly do, sleeping on my front with my head in the pillow), or the heat of my morning shower.
The latter seems most likely as my Dad, a doctor, suggested putting a cold compress on the eye when it was painful, the thinking being that heat may have been a factor in the discomfort, as well as the swelling. This seems to have worked. Every time I am in pain I stick a can of lager from the fridge on my eye for around ten minutes and it appears to very quickly solve the problem. Eye lids, sorry. Don’t stick it actually in your eye.
The second thing I have learnt is that the Predsol steroid eye drops, in my case, definitely do seem to work. Their is no research unequivocally proving the worth of steroids for hydrops, but for me, they stopped the pain and the eye appears to be improving much more rapidly than my first hydrops, which was very slow to claw its way back to some semblence of normality. After three months, the top of my eye is clearing, as are the sides. The centre is still completely misted over, but I am hopeful this will soon follow!
Lastly, and I have said it before, with scars on your eyes the best thing is sunglasses! Sunglasses are amazing for giving better vision and for taking away the light sensitiveness. I found a great free little app for the Mac OSX (which I work on for my job) called Screen Shades. This shades my whole screen and allows me to see much much better when sitting at the computer. Just type in Screen Shades for MAC OSX to Google and you’ll find a fair few options of where to download it.
So, five months later, I can read three lines of the board with my right, hyrdops-affecrted eye unaided. This is more than I could see pre-hydrops and the eye is visibly a lot flatter than before as well. I am starting to think I am spectacularly lucky in this respect – two hydrops one which has resolved fully to give functional vision that in most cases is very good, and the other which seems to be progressing well and is at least giving me a better result than previously. Obviously, the true outcome won’t be known for some time as the eye takes many months to heal, but it is a good start.
Oddly, and I think it is worth noting, my eye cleared in two big surges (it is only half covered now rather than fully covered). Firstly, I was running up the stairs at Covent Garden tube station (there are a hell of a lot of stairs) and near the top my eye suddenly drained substantially and I could see the stairs. Clearly, on stairs, this was not ideal balance wise. But I refrained from falling backwards. Just.
The second surge was when I was doing press ups, and it left my eye half clear of mist. Whether it was just lucky timing or whether it was physical exertion suqeezing out some fluid, I do not know!
Ok, so it’s four years since hydrops number one, and two years since hydrops number two. And around 12 years since Keratoconus first showed itself.
My left eye is now extremely good, better than it probably ever has been since I was 16. As long as the light is right. The brighter the sunlight the better. At night, however, it is not very good as I get very bad splintering on light sources.
My right eye, well. It’s hard to know. Sit me in the opticians and I can read the same line on the chart as I can with my left eye. Put me anywhere else and it struggles. Here at my desk, if I close my right eye I can certainly see the words I am typing – just – be it through a haze. And then If I look around the office I can see the fire exit sign across the room, and I can see everything in an odd, hazy way. I look outside though, on a clear sunny winter’s day, and I can see not a lot. For my right eye is very good in darkness. Not in light.
It is hard to know whether my right eye will get better. It was a much worse bout of hydrops than I experienced with my left eye. And the recovery is certainly a lot slower. At my desk I frequently find I have to close my right eye to see properly, because its half vision is distracting. And sometimes I think it is useless. But other times I find that, given the right light, it is actually very good. Also, when I do close my left eye, I find the longer I close it the better the vision gets, as if my brain is learning to look past the scar. It is odd. (Incidentally, I can definitely see around the scar, the lower half of my vision is much clearer).
Another thing to note is wear time. I wear my lenses, typically, between 8am and 11:30pm, far more than is recommended. And I do pay for it in the sense that my vision deteriorates the longer my lenses have been in. But you don’t get that deterioration until the next day. I have found that giving my eyes a break on a weekend really helps keep up standards during the week.
And yes, I do still get down about my eyes sometimes. Occasionally, it does get too much after a pretty bad “eye day” where computer work was nigh on impossible. But these are offset by good days at other times. It’s a balancing act.
With the hydrops, it is worth noting that when the eye recovers its vision slightly, you will get dizzy as the brain readjusts, sometimes for a few days.
Oh, and I abandoned the glasses. My vision changes too much to get any one prescription to work. It is a nightmare. So it’s just me and a bit of squinting that sees me through at the moment.
As for the future? Well, my last six-month check up showed no change in my eyes since the previous appointment. And that appointment had shown no improvement from the one before that. So the doctors think things might be settling. Hence, I am now on a 12-month check up schedule rather than a six-month. Whether this turns out to be the correct decision, we shall see…..
Not much to report other than the horror show that hayfever is causing to my poor eyes. In my experience, the tablets, eye drops and nasal sprays all do very little to help me combat the vision depletion that comes with hayfever and I just have to suck it up! Sunglasses help, as does cold water.
As for where my eyes are, my left scleral lens is now in my right eye and I have a new lens in my left eye – for those that know these things, I am now an F7 left, F6 right. Apparently this does not mean they are particularly worse, it might be that the lens has “settled back” onto my eye. Either way the vision is still decent and I am even finding some improvements in vision at night (i.e. alot less halo effect).
It has been a while – and for that I apologise. The truth is, though, I have little to report. I still have the same fit of scleral lens I had in my last post. I have been switched to 12-month appointments now at Moorfields.
One thing I did want to write about was the changeability of vision. I don’t want people to assume I can see 20:20 every day (I can never see 20:20 🙂 ). The truth is, my eyes change every day – sometimes they are great, sometimes they are not. Tiredness, weat time, hayfever, light conditions – these all effect how well I see. Even heat – I have noticed that when it is hotter I see less well. The fact is, I have more good days than bad so I tolerate the bad days.
I just started a new job, actually, and I now sit next to a large window. This is not great for my vision as the ambient, all-round light effects my scar and means I see less well. I noticed I was getting an itchy right eye after a few days, and had a build up of what I call crap (the white gunge you get with Sclerals). After some thought, I realised it was because I was squinting with my right eye because of the light. So if you get similar symptoms, this might be the cause!
I also wanted to point out a couple of things.
1. I have these three black dots that always pop up in my vision at this time each year. They are ‘floaters’ and emerge now because of where the sun is in the sky at this time of year. They are not irritating, but they do worry occasionally!
2. I sometimes see a patch of yellow light when I move my eyes too quickly from one area to the next. I have come to think of this as a symptom of the lens – a residual reflection on it. I would be interested to hear if anyone else has something similar.
Lastly – thanks to everyone for the comments and updates. This blog gets around 150 hits per day, which shows that there is a real thirst for knowledge out there. Keep it up!