CXL Part One - Done

[MattD87]

Christ, Gaz. Sorry to hear that. So strange how different it can be.

When you said they scraped - did you have the full epi-off? With mine they made some scratches, which I suppose is technically epi-on. I don't know whether they practice both at the Queen Vic.

Both your experiences have made me extremely worried for my good eye! The other problem I have is my sight is 20/20 in that eye, with just some ghosting. I first thought it would be great to have it done in that eye as I'd at least keep excellent vision, but now I can just think what if it makes it worse and I regret it for life...?

I'm in Eastbourne too. Interested to read how your second eye goes - do you have a date yet?

[CrippsCorner]

In all honesty Matt I would advise against doing CXL for anyone with 20/20 vision after my experience. I'm sure your intentions are the same as mine were, i.e. perform CXL so your good eye never becomes as bad as your bad eye. However in my case it's now far, far worse. Unless it improves I shall never be able to drive again at night, the reflections/glare is that bad

[MattD87]

I appreciate the honesty. I'm on the list but ever since reading that it can get worse I just, I don't know.. My consultant was absolutely 100% sure that it would get worse... So yeah, decisions!

The flip side is I know if I opt against it I'll never be able to stop thinking about it and whether it's getting worse.

I regularly think about your situation, both for selfish reasons and because I really do hope things start to look up.

[CrippsCorner]

That's absolutely a consideration dude. I too was driving myself mad thinking 'what if' if I don't go ahead with it, I think that was part of my push in the end! To stop bloody thinking about it all the time. Your consultant is wrong, there is no guarantees with this disorder. That being said, of course it could get a lot worse yet, you just never know... annoying isn't it!

I'm not trying to put people off CXL really, it's just when I read about it, there really weren't many negative stories, meaning it was a case of 'oh it'll never happen to me' but it did, and therefore it can happen to anyone.

[MattD87]

Very annoying indeed. I feel bad sometimes complaining when (at the moment) I'm in a much better position than some others here; certainly it's good to even have this option.

I've been trying to find trials/stories from people who have had the procedure done with near perfect vision, but I'm really struggling. I don't know whether this is because they're being advised to wait, or whether things tend to go well in these situations.

It's almost as if I'd prefer to have slightly worse sight which would force my hand - as daft as that sounds! It's just as we all know time is the only thing we don't have, so if there's a sudden progression in six months while I decide I'll be kicking myself.

[CrippsCorner]

Not daft at all. I've often found that people with worse keratoconus than me seem to be able to rectify it better, and they end up with better vision than I have although mine is/was technically 'moderate'

[Gaz2k21]

Sorry to scare you Matt, My vision to date has been up and down but most of the time it is as good as it was before the procedure it's still a little tingly occasionally and I find I get days when I'm quite light sensitive, no date for my other eye as yet but my follow up for this eye is on the 15th hopefully everything is normal.
That being said I think I may be unfortunate in that I feel pain quite heavily ( i certainly do with other things like tattooing) and the Opthalmologist I spoke to at Eastbourne DGH (I can't remember her name I know it wasn't the usual one I see) did say it varies wildly from person to person how bad they feel it.

I have to say I'll be glad when all these procedures are done and dusted.

[MattD87]

Yeah, the whole mild/moderate/advanced thing is misleading as there's no relation to actual vision - it all depends on the size, shape and position of the cone, etc.

Good luck on the 15th Gaz, mine is the 22nd. Hopefully they scan mine again as three months will have passed and, weird as it sounds, I'm semi hoping for small progression in my good eye as that would take away any doubt whether I should get it done.

It's odd how much it can vary. I'd certainly never considered myself to have a high pain threshold, in fact the opposite! But perhaps when my other eye is done I'll feel the full extent, who knows!

[MattD87]

Hi again all.

An update for those interested. CXL performed on my right eye yesterday morning. After much deliberation I decided that even with 20/20 in that eye (well, according to the Snellen chart - we all know it doesn't quite translate to the real world) I should go ahead with the procedure in the hope that, if successful, I'd never need to let this disease get the better of me.

Well, I won't lie, the pain was worse this time. Left eye I rated at 3/10 pain, this definitely peaked at about 6. Not unbearable, but the stinging combined with ENDLESS watering and scratchiness meant everything was very uncomfortable on my return home. Being earlier in the day also didn't help, as I had to get through the afternoon and evening before I was actually tired enough to sleep.

Today things are much better. It looks like I've done a round with Manny Pacquiao, but it's not so juicy and most of the pain has gone - some scratchiness remains, but nothing I can't handle with paracetamol.Vision in that eye is a bit foggy and blurry, but there's no point judging that just yet.

It's tough getting by with my weaker eye, although weirdly (did anyone else get this) I've found that I can actually see better out of my bad eye since my other one has been out of action than Ive ever been able to before. It could be timing that CXL from that eye has taken a sudden step in improvement, but I suspect it's more that my brain/eye has thought "well, we actually need to do some work here or we're in trouble"! Vision in my bad eye wouldn't be enough to get around, but certainly the main "image" of text is clearer than the ghost image which means I can read from a further distance than usual. I hope that eye doesn't get lazy again once my sight improves in my good eye.

Anyway, follow-up is Wednesday, and then I can look ahead to maybe getting lenses fitted, certainly in my left eye. The big hope now is the blurriness doesn't stay for too long in my right eye.

[CrippsCorner]

Really hope it works out okay for you dude! I'm going through a bad eye phase at the moment where my 'worse' eye strangely seems a bit better than my 'better' eye... even with the haze; so you're not alone there with the weirdness!