Newly diagnosed

[scottz750r]

Matt, that's pretty much the same as me, i can see 3-4 lines down i think, can't actually remember. (i should of payed more attention) although when you say you can see X amount of lines down, is it crystal clear? with me, it's all got a slight blur, it just gets worse the further down the chart i go. I'm guessing my eye is worse than yours as glasses help you. when i was diagnosed 5 years ago, the opticians tried me with loads of different strength lenses, none of which helped.

Cripps, i can't remember exactly where i saw it, but i've seen it on a few pages. i saw one, which was actually from the UK and it said 2% of the people treated actually ended up with slightly worse vision after 12 months of having the CXL done. I'll try to find it again, but unfortunately i only stumbled across it after hours of reading about KC.

[CrippsCorner]

It's probably a good thing that bad results are so hard to find lol. Even the official link there from NICE states only 1 out of 2,500 people tested came away with scaring... that's not bad odds in the scheme of things. Of course this time around I'm more anxious than before as I'm getting my good eye treated, but I just have to hold on to the very real possibility that it could get worse too, then I'd be screwed.

[MattD87]

Lia - thanks for the link, very interesting

Scott - No, not clear at all. Line 3 was about the last one I could be confident what the letters were, 4 was kind of guesswork. It's not so much that they're blurry (although they are a bit) it's the ghosting for me, after line 3 the line above starts merging into the one below and I can't be sure which letter is on which line any more. Like I said with glasses prescription (I don't have the glasses as not much point) this helped for a further line, but that's essentially vision I couldn't use if both eyes were in the same state. To be fair even the big letter at the top wasn't crystal clear - it was obvious what it was, but the white background had made the edges a bit faded and white, so even though it was clearly an A it wasn't a big bold letter.

Cripps - Bad results are indeed hard to find, which I think is part of the reason I'm remaining quite upbeat at the moment. Forgive me if you've already said, but how bad is your 'good' eye?

[CrippsCorner]

At first I thought it was bad too, until I realised that with good contacts/glasses I can see almost normally... I mean in terms of sharpness, of course there is still some shadowing and double vision but I can cope quite well with it. Strangely, after scans were done, it revealed that my good eye is actually thinner than the bad eye! What makes the vision no where as bad is that the thinning/bulging of the cornea is off centre. Again this concerns me that potentially it could change and perhaps even become worse than my bad eye.

The scans here show a difference of 6 months progression.

Here is my bad eye where you can see the darker red is in the middle of that centre circle...

http://i18.photobucket.com/albums/b133/ ... ravgfn.jpg

Here is my good eye, where the darker red is off centre to the left of that circle...

http://i18.photobucket.com/albums/b133/ ... 8mkl0d.jpg

[MattD87]

A quick update for those interested.

I have my appointment at Queen Vic in East Grinstead first thing next Weds (7th). It seems they'll need to redo all the tests that happened across three separate appointments at other hospitals earlier this year! But I should at least know whether they think I'm suitable for CXL and maybe get the ball rolling there.

Appointment for the lens clinic in August, we waited nine months because she was hopeful I'd be through any further treatment (or perhaps not) by then, and if it's CXL my eye should have settled down to be fitted for lenses. There wasn't any point a couple of months ago as my prescription would likely change anyway.

So that's where I am. Anything I need to ask? As mentioned my big concern is my good right eye. I can see most of the eye chart with it and although there's ghosting at night I'm not anxious driving (yet). Should I push to get it done in my right eye as well? My worry is I don't want it to deteriorate to the point I can't see uncorrected. All the while my right eye is good I feel able to cope with the condition.

[MattD87]

Right, well, appointment done...

I've been put on the list for CXL, in both eyes. The surgeon was quick to recommend the treatment even though I'm older than some to be diagnosed. He was "very sure" that it would continue to progress in both eyes - based on what I'm not sure, and in a way that took me aback because I was expecting at least some caution. It's weird the things that bother you in appointments - his certainty that CXL was required had me thinking perhaps I was in a worse state than I thought.. but he's probably just playing the numbers and not wanting to waste any more time.

He gave me the choice between left eye (bad) or right eye (good) first. Up to that point I'd thought bad first, then good, but having been given the option I wasn't sure. But then he suggested that when they do both eyes they can sometimes learn things (based on the first eye's reaction to the treatment) so then there was no doubt that I should do the bad eye first. So 3-4 months time I will be having CXL on eye one, and a couple of months later on eye two.

I was also slightly taken aback by the "moderate to advanced" left eye - I'd been told previously, when diagnosed at another hospital, that it was heading towards moderate, but this was the first mention of advanced. It worried me a bit because I've read about advanced cases not even being able to read the eye chart, while I can make out line 3 and some of line 4... Perhaps it depends on where the cone is - I was told it was very central, just slightly off, which supposedly lessens the visual effects of KC. While I was expecting to be put on the list for CXL, I'm still feeling a bit sorry for myself at the moment. Silly considering what some people have been through and that I can get by fine day-to-day...

Anyway, desperately hoping my right eye stays in the same state it currently is (I think better than 20/20, albeit with ghosting) because then if CXL works I'll be more than happy with my vision and I'll feel I've got away lightly. I was well within the thickness boundaries - 491 microns left, 495 right. I was surprised they were close what with my left being much more advanced. Another positive was that the cone was quite narrow, as in the central part jutted out but there was plenty of thickness on the edge of the cornea. Not sure how that's a positive really, but he said it was.

In my haste to leave I forgot to ask for the leaflet about the surgery and for a copy of the scans for myself, but I'm sure I can get those if I ask.

Thanks for reading! Any thoughts, advice, questions welcome
Matt

[kieran19685]

Hi

Was it a private clinic or the NHS.

[MattD87]

NHS - Queen Victoria hospital in East Grinstead.

[CrippsCorner]

In my opinion there's something more important to consider when thinking about which eye to treat first, and that is the rate of progression in each. It was obvious from my 6 monthly scans that my right eye was deteriorating faster, therefore that's the one I got treated first... made sense to me.

[MattD87]

That does make sense. Unfortunately I have no scans to compare, and as soon as the consultant saw me he went straight for CXL.

I feel like the ghosting has got worse in my right eye ever since they tested the thickness (the bit that looked like drops of rainwater in my eye). I could be imagining it but did anyone else notice?