Good news 12 months on.

Two days short of a year after the operation I had my stitches removed. This was 6 months earlier then usual but the doctor seemed to think they may be responsible for the problems I have been having.

I got them removed under local anethetic and sure enough when he cut the first one it felt like a rubber band being broken and the doctor said that there was a lot of tension on the stitch and this was a good sign that the cornea was likely to move after the stitches were out.

The next day was extremely painful, now its two days later and the computer screen with the brightness lowered is still to bright to look at for long periods. My vision has been misty since the stitches were removed though that seems to be improving and through the mist I can definitely see much better then I have been able to see for months. I'm told that it will probably take a month before the cornea stabilises into in a new shape - right now however my vision is so much improved I am feeling rather optimistic (again)! :)

Well 11 months after the operation and my cornea continues to change and this increasingly is a mystery. Last time I saw my surgeon he told me that it would be best to leave the sticthes in for the full 18 months. Now however he seems to think they should be removed 6 months early - or in about 1 month.

He must be hoping that the changes in my cornea are due to the stitches though I don't think there is really any evidence for this. Already my astigmatism is worse then what before my operation the surgeon claimed was the worst outcome for one of his patients so maybe he's getting desperate. It is likely that the astigamtisnm will change a lot (maybe for the better) after the stiches are removes they tell me optimistically. Today he seemed to have gone away from the collagen cross linking idea at least for now.

My attempt to wear the contacts didn't get very far due to discomfort and I don't think there is much point in continuing with that for now as after the stitches come out I just may be able to wear glasses and my contacts would very likely have to be changed. I could not see as well with contacts as I could before the operation which I hope will not always be the case. I was lead to believe it would be easier to fit me with contacts after the operation - if that is true it must be along time after the operation.

edit: BTW my astigmatism which I was so happy with after the operation when it was 2.0 is now well over 5. Because of this and maybe other factors my vision with glasses could only be corrected to 6/15 - far from the 9/9 I was promised!

10 months on

Well I went to my optometrist today. He said "Wow dude your eye is like all different shaped again"* So much he rang up the surgeon. The surgeon said. "Yeah its like freaky, I've never seen anything like it before"*.

So yay for me, I'm special - like everyone else.. Oh well the eye had been more comfortable since the operation. I just cannot see with it very well. Thank goodness its only one eye.

Anyway I got a bit fed up with waiting for my eye to co-operate and settle down so that glasses could be prescribed for it and decided to try hard contacts again. At least they should be able to work even if my eye does continue to change slightly, and just possibly the new cornea will be able to tolerate them better then the old cornea could.

The surgeon who has done hundreds of these operations really did say that he had never seen this before so perhaps the purpose of the blog - to let other people know what to expect from the operation - isn't really going to work so well....

I'll probably update again in a week or two when I have the contacts.







*original meaning is retained but exact words may be changed in some quotes.

blah

Well I tried a contact and it hurt and didn't help my vision. But The optometrist is going to order me a new one and we will try again in about a week.

better news (7 months after the opperation)

Yes I've been to see the surgeon again and my news is better then I feared. Apparently the folds I mentioned earlier between the donor cornea and the remains of my old cornea are tiny and should not negatively affect my vision.

So what is the problem? Well it's something around the edge of the cornea. The doctor temporarily covered the edges of my cornea and this allowed me to see very well!

Apparently a cornea is often around 11 mm in diameter, a traditional cornea transplant is about 7.5mm - they don't want it too big as it increased the risk of rejection. This wasn't an issue with the layered transplant they did on me so they replaced a 9mm area - anyway it's possibly that there is still some light being reflected into my retina from the crazy shaped old bit of my eye. It is also very likely that the stitches in the outer few mm of my cornea (see pictures below) are mucking up my vision either directly or by pulling the cornea out of shape immediately around them. So...if thats the case my vision should improve a lot in around 12 months when the stitches come out!

In the mean time it's hoped that I will be able to get decent vision by wearing a gas permeable (hard) contact lens. Yes this sounds a little like going in circles, as I had the operation because hard contacts were causing problems BUT it will be good to know that I can still get my vision corrected by a contact - at least it's not gone backwards! Also the new thicker tougher better shaped cornea in theory should fit a contact much better and also be able to withstand the wear and tear of a contact better! Well that's the theory anyway. Latter this week I go to try and get fitted with a hard contact lens. I'll report how that goes.

I still think a profession that produces half the results in double the time, and then charges you to ask whats happening is a onto a good thing! ;) I am however feeling much more positive about the eye, and it seems that it is very rare to have as many difficulties after the operation as I am. After all for about 5 seconds I saw very clearly with it yesterday! I'm not sure but I think 9/9 (or 20/20) There may be some hope for it yet! :)

(Oh and just for the record in case somebody cares these days my astigmatism is about 2.5 somethings - diopters I think?)

6 months on

It's been a while since I posted anything.  I kept thinking I might have good news soon - but it never quiet happened.

So I was promised there was a small chance of complications but short of that my vision would be 9/9 after the operation.  Definitely.   In three months.

Now it's 6 months and my vision is still around 5/9 - so I am not very happy about that.  It must be nice to work in a profession where you can tell people they will definitely get better vision, in half the time, and not give a refund!

Anyway on the other hand my eye *is* more comfortable then it was.  It's still not perfect and the stupid vision at times gives me minor headaches.  The vision still changes a bit by itself and more so when I try new glasses, something I have done a couple of times now.  I think the latest change only made things worse and I will have to change back. 

I don't know maybe my expectations were too high or maybe I am the odd case where the operation doesn't go so well - however I really would recommend treating the operation with a LOT of suspicion.  In retrospect I don't think I would have gone this way quiet so quick - though perhaps I would have in the end as I was running out of options.  Get your optometrist to show you how bad 5/9 vision is before you do anything - you may end up seeing like this!  I guess it depends on how bad your vision is how scary this will seem.

surprised

I went along to my optometrist today wondering if I was wasting bother out time but my vision was bad and seemed to have perhaps got a little worse plus and it was giving me mild headaches so I wanted to see if anything could be done.

He confirmed that the prescription for my eye had changed - the amount of correction needed had almost halved! I was quiet surprised to know it ha changed this much, but it can only be good.

The bad news is that even with this change I still could not see very clearly at all. It seems that even with the cornea in the right shape the internal optics of the cornea can disuse the light so that vision still sucks - which is why I had only just noticed a fairly big change in lens prescription. As far as I can work out that's what is happening to me. I've no idea if this can be expected to slightly improve over time or if it means that no matter what the surface of the cornea does I will not get good vision. It would be nice to know.

My optometrist volunteered to ring my surgeon which I am grateful for. I didn't tell my optometrist this but I had tried to ring him a few times myself but he hadn't returned my calls. Maybe an optometrist will have better luck getting his attention....

3 months later

My operation was on the 4th of December. Tomorrow will be the 4th of March about 3 months later. By now really I was expecting my vision to be probably close to 9/9 and my eye to be comfortable. Instead my vision is probably not quiet 6/9 and I continue to need drugs for my eye to stop inflammation, mucus and bad things in general. Even with drugs its not really comfortable.

I've been on maxidex a week and a half longer then I was originally supposed to after two unsuccessful attempts to change to FML. Tomorrow I change to a combination of voltarin(sp?) and FML drops. It would have been today but the chemist had to get the drops in from Sydney. My eye pressure was check yesterday by the optometrist and is normal- one of the many complications of steroid drops like maxdidex is that it can get dangerously high. Dr Maloof still doesn't want me to stay on it any longer then necessary which sounds like good sense.

Maybe its just taking longer then expected and it will still heal up - at least so that it is more comfortable. It's hard not to feel a little discouraged however. I think maybe I will give Dr Maloof a ring today and see if I shouldn't visit him and see what’s going on with the eye.

My eye does appear to have stabilised enough for me to be able to get a lens for my glasses prescribed. Hopefully I will get it this week, which should be a nice improvement in vision for me.

Pictures of my eye (10 weeks and 5 days after opperation)

Here's a picture of my eye taken about a week(?) after the operation.
And here it is again today:

It's a lot clearer, which is why the stiches are much more visible. In news that is not so good, today the vision corrected with glasses was only 6/9. My optometrist said that if this didn't improve it would be "disappointing", however he was not confident that it would improve a lot. 6/9 is (just) good enough to drive a car and isn't a disaster - but I was hoping it would be better. Its also not as comfortable as I would like, but the optometrist is confident that as the last of the healing completes it will become more comfortable.

My astigmatism today was still 2.75 - however the axis it was on had rotated somewhat. I will go back in two weeks and see if it has stabilised enough for me to get glasses prescribed.

Yes their is blue light shining on my eye! :)

astigamtism 2.75

20 Jan
I went back to the surgeon. He had a look at my eye, measured my astigmatism (but didn't tell me the measurement). He told me that it was so small that if he tried to change it it he was just as likely to make it worse.

28 Jan
I went to the optometrist 2 days ago and was told that my astigmatism was now 2.75. 0.75 worse then 1.5 weeks after the alteration to my stitches. Apparently this could still change but with glasses shouldn't stop me getting very good vision. I am still not seeing very well - but the surface of my eye still has to heal, and apparently there are some other bits in the cornea that are still healing up too. Which makes sense - the eye is still a bit sore and I am having drugs (steroid drops) to settle it down. I am going to have to wait a bit longer before I get glasses prescribed.

I was told it could take three months from the operation before all the healing is complete - that will be first week of March.

I expect with my table tennis I can use better eye sight then most....so I do hope 2.75 isn't too much!

Meh I amn back to wearing glasses. I am also at work, ( my eye has settled down a bit since waking up). What would I know?

4 and a bit weeks after operation

Very randomly when I woke this morning I found that I could see very clearly with my non-operated eye. Indeed when I put my glasses on it got worse. Actually for the last week or so while wearing glasses I noticed my vision was a little worse then often.

This is very odd and is slightly disturbing, my vision and the shape of my cornea really should not change from day to day, it's also pretty much unheard of for a cornea with keratoconus to improve! However as the change is an improvement in my non-corrected vision I am not as alarmed as I would otherwise be. I suspect too achieve the best possible vision I would still need glasses but with a much reduced prescription. I don't know if this is relevant to the operation but its certainly very weird and I thought I would note it here. I also have had a lot of sensitivity to light etc from this (well both) eye. This morning there was a lot of mucus in the eye when I woke up too. I don't know whats up with my eyes, they sometimes seem rather original!

I have had my vision change like this before a few times over the year much to optometrists surprise, however in the past it has usually been only for a few hours unlike this time where I think its been brewing to some extent over a few days, though it was only today that the vision was clearly better without glasses.

Overall my eye is improving steadily. I had been hoping to start work today but I think it would probably be wise if I put it off another two days.