My experiences (2 operations) as a man with funny shaped eyes

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My experiences (2 operations) as a man with funny shaped eyes

Postby cobble88 » Wed 14 Feb 2018 3:11 pm

Hi guys,

A while ago I wrote this, just really to get it off my mind and keep it down to look back on in the future, but if my experiences can help just one other person feel a bit more at ease about the whole thing then even better. KC really disrupted my travel plans aha, but I didn't really know what to expect or what was normal. So, have a read, and leave some feedback if you want :)

The Man with the Funny Shaped Eyes – AKA: Keratoconus & Cross-Linking Surgery

My travel plans for September of 2016 and onwards were Valencia based, save some money and travel around central and south america afterwards. Well, that came to a pretty quick halt towards the end of August, when I went to Moorfields for a check up on my left eye after my previous surgery in December 2015 and was told I needed an operation on my right eye this time. This post is really just for those interested in the operation itself, or those who are morbidly curious. I’m not here to judge.

To back pedal a bit, sometime in 2013, I was diagnosed as having Keratoconus, a condition of the eyes that causes them to lose their shape, which was causing a drastic decrease in my vision over the course of a few months. It was particularly worse in my left eye, but they would be doing regular checks on my right eye as well. I put off the operation on my left eye to go to Canada on my working holiday visa (probably a mistake, but the consultant said it shouldn't change and not to waste the visa), and then at the end of 2015, I finally got my left eye operated on.

Going into the operation, I had no idea what to expect, as I couldn’t really find any readily available information online. I had been told that some people experienced a lot of pain, and others barely had any. So, if this post can help even just one person have a better idea of what to expect, then it’s worth writing. Obviously, I can only account for my own experiences with Moorfields hospital, but take from it what you will.

First things first, just to make this very clear, please DO NOT have both eyes done on the same day! I cannot stress this enough, it’s not worth the sake of convenience, but more on that later.

Pre Operation – Leading up to the Operation Day:
At some point before your operation, you will have to go in for some scans. This is all very quick and easy, with nothing to really worry about. Basic eye test “look at the light” type stuff. With regards to concerns I had beforehand, I’ve put a couple of notes below, which I will go into more detail about further on into the post. Again, this is the information I was given, and may be different as techniques change.

¬ FAQ:

Now, in layman’s terms (because that is what I am), the corneal cross-linking surgery is a fairly common procedure nowadays, in which they use a small blade to essentially ‘break down’ the front of the eye, put some minerals and stuff in, and then use a laser to essentially ‘restructure’ the front of the eye, henceforth stabilising it and, hopefully, preventing any further misshaping. This is really the best way I can describe it. Yes, you will be awake, and yes, it sucks. I’m sorry.

You ‘shouldn’t’ feel anything during the procedure and for a few hours afterwards as they hose your face with anaesthetic eye drops, which numb a lot of your face as they drip down. Don’t be afraid to ask for more if you want it.

I was told there was a 50% chance my vision long term would be better, 47% it would go back to the same as before the operation, and that there was a 3% chance my vision would worsen.

The information leaflet that arrives with your scheduled date will recommend that you take a week off of work, and two weeks if you work on computers. I’d advise to just take the two weeks if you are able to. Your personal health is the most important aspect, and in the long term your vision is more important than the bit of extra cash you might miss out on from having an extra day or so off work.

Post Op Vision:

0-7/10 Days: Blurry, and changing constantly. What might seem crystal clear one day might be very blurry the next. Your vision will fluctuate quite a lot during this stage so don’t panic. The day of the operation is quite painful once the initial local anaesthesia has worn off. More on that later.

10-21 Days: Again, this will vary from person to person. My vision had generally settled down by the end of the second week, with just very small changes noticeable occasionally. There will be odd flashes of pain.

After the operation, you will have a bandage contact lens put in. As someone who has never worn a contact lens before, this was a strange feeling. You’ll have the David Bowie look going on for a couple of hours due to the iodine, but the lens itself is clear. Remember that, it’s important for a story later….

Pre-Operation (Day 0):

I had both of my operations done at Moorfields hospital, with two different surgeons. The first time, I was in at the scheduled time whereas as the second time I was waiting for around 2-3 hours until I went in. Expect delays, and you can only be pleasantly surprised. I say this in case you are booking a train home.

Heading to the hospital, I want to make another important point, which I shouldn’t really have to make, but will do anyway - DON’T DRIVE YOURSELF. Just trust that you will not be driving for a week or so after the operation. I know some things say ‘don’t operate x and x’, when there’s no real danger, but seriously, you’re not driving anything after this operation.

Anyway, back to the actual operation.

The Operation (Day 0):

You’ll head to the waiting room and wait to be called, as per usual, and when you go into the room there will be the surgeon and a nurse. You’ll sit in a chair while they go through the usual ‘please don’t sue us’ routine, in which you are required to sign a disclaimer and then they start by putting a load of anaesthetic in your eye. They will then tape your eyelashes out the way while they put the clamp in, for want of a better word. They continue putting various drops in and then they will check if you are ready to start. The first surgeon I had was a wonderful lady from Portugal, who put on some Brazilian Jazz and was speaking to me all the way through, as I was obviously quite uncomfortable, trying to help to put me at ease.

Once they are ready to start, they will use the small blade to start breaking down the front of the eye (I really don’t know the medical names, sorry). At this stage I had two very different experiences; my left eye seemed to drastically blur immediately in the swirls of the blade, and before long I couldn’t really see anything at all, which was great to be honest. My left eye was far more progressed with regards to the keratoconus. On the flip side, in my right eye, which was being done really as more of a preventative measure, my vision remained fairly clear all the way through, relatively speaking.

There was about 10 minutes (rough guestimate) of the knife-work in both operations, which is the worst bit by far. Don’t be afraid to ask for more anaesthetic, or if you just need to take a few moments to relax. During both operations, the surgeons stopped as I’d gone a bit white and my whole body was tense (not going to lie, I’m a bit of a wimp when it comes to things like this. I hate the dentist too).

After that, they spend some time just putting various drops into your eye, such as iodine and more anaesthetic. After another 8 minutes or so, they start the laser part. Again, this is painless. I just stared at a spot on the wall as they advise you to try not to move your eye during this.

Post-Operation (Day 0):

Once that is done, they will give you the list of drops, and put the bandage contact lens in. If you’re not used to contact lens’, it’s a bit uncomfortable but you get used to it. They advise that this is to stay in for about a week, but if it falls out after three or four days, it is not a problem if there is no pain. In Moorfields, the pharmacy had the medication pretty much ready to go, so there wasn’t much of a wait. What I hadn’t been expecting was the stack of eye drops I was given. The dispenser brought a whole tray of meds over, and I expected him to pick some out to put in the bag. Nope, the whole tray for me! Just call me H-eye-senberg, heh. No?

Going back to my advice near the start of this post regarding just doing one eye at a time. Going into the second operation, I at least had an idea of what to expect. During my first operation, there was another guy there who was going to have both eyes done at the same time. My main concern with doing this is not so much the actual operation itself, which would suck entirely by the way, but rather the pain that occurs around two to three hours after the operation once everything has worn off. If you are waiting to have the operation, it’s just better that you know this is coming so that you can stock up on painkillers. The best way I can describe it, is that after the first operation it felt like somebody had stuck a hot knife slowly through my eye. F***ing OUCH. The second time felt like there was a little ball of fire rolling around inside of my eye. There are anaesthetic drops in the little goodie bag, and some oral voltarol, so take whatever you can, within the recommended doses obviously, to help get you through this. Personally, I found that Krispy Kreme doughnuts can only help as well. Bear in mind, that this was just the one eye, so if I’d have had both done I can’t even imagine the pain. Let alone not being able to see for a few days.

I found on both occasions that I eventually managed to just fell asleep through the stress of the day, the drugs and general exhaustion. This is the part I found to be the worst though out of everything on both occasions, and plenty of tears were spilt. Manly tears, obviously… ahem.

Post-Operation (Days 1-3):

The day after the operation will still be uncomfortable, obviously, but the worst of the pain should have gone. You might be very light sensitive, so sunglasses are a necessary item to use. You’ll still be on drops every couple of hours, and there’s six different drops to keep track of, so make sure you or someone around you is organised. I was told not to wear a patch as this could cause infection, so what I did was cover the lens of my glasses so that I could still see with my left eye, but wasn’t using my right eye at all, and could keep it comfortably shut or blocked at all times. Obviously, just be sensible at this stage. There will still be pain and discomfort so use the medication as instructed, and just rest as much as you can. Don’t be rushing back to work.

Post-Operation- Long Term:

I found that even a few months after my operation, I would occasionally notice a slight change in my vision. Moorfields advised that the vision can change anything up to 18 months after the operation, so again, don’t panic if you notice that this happens to you. You will find it’s best if you keep an eye lubricant drop nearby at all times. I’ve noticed that especially in the summer when the air-con is on in every shop, my eyes dry out very quickly and get quite uncomfortable. My vision hasn’t noticeably changed since the operation on my right eye, but my left eye has significantly less glare and is generally better than it was. It’s the weaker of the two eyes anyway, but as long as it doesn’t get worse I’m a happy boy.

One quick point to make before I finish up. I mentioned earlier that the bandage contact lens is clear. The reason I say this is because after my first operation, my left eye was a vivid green colour, which I now know was due to the iodine drops. I had thought that the bandage lens was green, so that people would now if it had fallen out. It was logical in my mind…

Anyway, I looked at my eye once I had got back to Norwich after the first operation, and my eye was back to normal colour (blue) and outrageously painful. Putting two and two together, I figured the lens had fallen out, hence the very ‘raw’ feeling and pain in the eye. Long story short, after a trip to the local A&E, I ended up with two bandage contact lenses in my eye! This wasn’t really a problem, but when I told the guy at Moorfields that had a chuckle and said it wasn’t the first time this had happened – So take note!

I hope that this can help even just a couple of people feel a bit more at ease with regards to expectations of a forthcoming operation, or even to compare to their own experiences.

If you've made it this far, thanks for reading!

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Posts: 120
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Keratoconus: Yes, I have KC
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Re: My experiences (2 operations) as a man with funny shaped eyes

Postby Grant » Wed 14 Feb 2018 4:36 pm

Hi cobble, welcome. Great write up, many thanks for taking the time to share.

If only KK was available on prescription as a painkiller...

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