Complications of CXL. Advice needed please

[Emma_Jayne]

I apologize in advice this is probably gonna end up in a long post that will make zero sense, so since i had crosslinking done in May 2016 ive suffered double vision, we've tried all sorts different lenses, drops everything i decided to have CXL done on my right eye last year because its better than a transplant right? So today i went for a routine check up nothing to worry about, i actually finally got my lens for my right eye and had 20/20 vision except it made the double vision worse, so we spoke to my consultant he checked my eyes and i still have haze, and said the double vision is probably untreatable without a transplant and even then it might not solve it, he went through some pros and cons of transplant then said he would send me to moorfields see if there is anything they can do. My questions are has anyone else experienced this, is there anything else that can solve the haze? If i had to go down the transplant route then what sort of recovery time am i look at, how's the surgery, your vision after? Any advice would be appreciated

[Anne Klepacz]

Hi Emma,
If you put 'corneal haze' into the search you'll find quite a few posts on the topic though as far as I remember, there was only one case of haze persisting as long as yours has. It's really good that you're being referred to Moorfields - they've now done thousands of CXL treatments over the last 5 years or so, so may have come across other cases similar to yours. Do let us know what happens when you're seen there. With transplants, most people can go back to work in two weeks. How long vision takes to improve varies a lot - with one eye, I could notice a big difference after a couple of months, with the other eye it took a lot longer. Most people will still need some correction after a graft. For some that's glasses, for others contact lenses.
You've had a hard time over the last few years, so I do hope the Moorfields visit will be positive.

[Emma_Jayne]

I've done lots of research on corneal haze and length of time post CXL and what i have found out is the only cure is a transplant, which im not gonna lie scares the hell out of me. I just cant come to terms with it. CXL was meant to stop me from needing a transplant anytime soon, if anything if i had let the progression continue i wouldnt need one for a long time. I'm just not ready for it. I'm wanting to start a family if i had a transplant before i got pregnant then would labour and birth affect the transplant? It's driving me insane

[Anne Klepacz]

You'd really need to ask about that at Moorfields IF they tell you that a transplant is the only option - they may have other suggestions given the amount of experience they've had with CXL now. But what scares you so much about a transplant? I've had 3 now (2 in my 30s and more recently a regraft in one eye. And of course I was nervous before the first one, but it's done under a general anaesthetic so you don't experience the surgery and, unlike CXL, there's very rarely any pain afterwards. Not that I'm suggesting anyone who doesn't need a transplant should have one! But there's lots of us forum users who can vouch for the fact that life can be good after a graft. Of course for a small number of people, there can be complications with a graft - but that's true for any procedure as you've sadly found.

[Emma_Jayne]

I think it scares me because i know that it still probably won't cure the double vision i have, and if it doesnt fix that then its pointless since i can get 20/20 vision with lenses but it makes the double vision worse. Which a graft can also do so ive been told. And also the discomfort worries me. Can you feel the stitches? What does it feel like? Can i really deal with anymore complication because the last one left me battling with pretty bad depression im just not sure im strong enough to deal with it all anymore.

[Lia Williams]

i actually finally got my lens for my right eye and had 20/20 vision except it made the double vision worse.

Hi Emma,

It may be that a different design of lens could help. I had this problem for years with my old right lens - it was comfortable, a good fit, and I could read the 6/6 line but there was lots of ghosting so it didn't really seem like 20/20 vision in real life. But with two eyes together it wasn't a problem so I had to continue with the lens.

When I did have my right eye refitted they did manage to find a lens that didn't have the ghosting. So I think that it would be worth asking if there is a different lens that could reduce the ghosting.

Lia

[Emma_Jayne]

I've tried pretty much every lens from kerasoft, to sclereals and a mini sclereal was the only one i could tolerate. We've tweaked them so many times ive lost count. I dont think there is much more than lenses can do to keep because the issue is the haze left from CXL isnt treatable with lenses.

[Anne Klepacz]

Just to answer your questions about what a graft feels like. No you can't feel the stitches. The eye feels a bit 'gunky' for the first couple of weeks and can be more light sensitive for a while. But after a couple of weeks, no one looking at you would know that you'd had an operation. The hospital provides a plastic shield to wear over the grafted eye at night (to avoid rubbing the eye while asleep) again for a few weeks. And there's no heavy lifting for a few months to avoid putting pressure on the graft and the stitches (that's why you'd need to ask questions about pregnancy). But no one is going to force you into having a graft if you don't want one or if you don't feel ready for it - it's your decision.

[Lia Williams]

Emma,

It does sound like you have tried lots of different lenses. I too have last count with the number of tweaks I have had over the years. I can appreciate that lenses won't help with the haze but they might be able to help with the double vision.

Good luck with your appointment at Moorfields.

Lia

[CrippsCorner]

Hi Emma,
If you put 'corneal haze' into the search you'll find quite a few posts on the topic though as far as I remember, there was only one case of haze persisting as long as yours has.

That would be me!

Couple of years on now and my haze is exactly the same. My experience though does seem slightly different to yours as I have reasonable vision in that eye without any contacts, and no matter of contacts actually made it any better. Obviously we know when I say reasonable vision, I am not talking about ghosting etc. which is where the haze excels. The only contacts I found to make a difference to the ghosting was scleras, but then I unfortunately had a problem with blood vessels forming under the eyelid.

Of course there is the option of a transplant for me too, but I see it as the last possible option. I am deeply regretful of my CXL, but then what was I going to do? I'd always be wondering 'what if' if it carried on getting worse without it.

I've just learnt to accept it for what it is. I never made it up to Moorfields but I'd love to hear your experience from going if you update this thread.

Thanks,

Olly