CXL - Would you???

[Libby]

Hi there,
Just a thought. How many of the older KC patients on the forum would have gone down the CXL route had it been available all those years ago when we were diagnosed.
I only ask because I have a teenager who has recently been diagnosed with KC in one eye. I am very keen for her to at least look into the CXL procedure but I am coming up against a lot of resistance (I think through fear of the procedure).
I know that if it had been availalbe for me when I was diagnosed I would have jumped at the chance of stabilising my cornea's.
Just wondered how other people view this procedure.

Libby

[rosemary johnson]

Ye-es - I think I probably would.
If I'd known then what I know now, of course.
But it would depend on it being available and my eyes being suitable.
My KC apparently came up very fast - I went straight from ordinary specs for shortsightedness and no idea there was any other problem to sclerals within a year, during the course of which I gave up wearing the glasses as I'd become so short sighted as the only thing I could see wtih them on was the bits of dust on the lenses and was better off without.
I got sclerals at 14 and had my first hydrops at 18. SO it's possible I'd have been too far "gone" to be offered CXL before I'd had chance to consider it.
There's also a question of how it would have fitted in with my studies, exams and the like. And if I'd decided to finish my time at university and then line up the CXL, I'd have had a hydrops in each eye in the interim and it would probably have been too late. INcidentally, the 2 hydrops did stabilise the corneas somewhat and for a while.
But yes, in theory I'd have been very interested.
Rosemary

[Andrew MacLean]

Um, yes, I think I probably would have accepted CXL at an earlier stage; although I do think that much of what is written about the procedure needs a moment's caution.

It is known that even with no intervention most people with Keratoconus never progress beyond needing glasses or contact lenses. You really have to subtract from the figures that proportion of people who have CXL who would not have progressed if they had not.

That said, yes, I think I'd certainly have given it a go.

Andrew

[j vossough]

I would have considered it very seriously, and for that matter any other options too, especially as there were no gas permeable lenses in early 70's under NHS and level of discomfort was high.

There are however two issues; long term effects, and level of "knowledge, competence & understanding" in your locality. With extra thin cornea I don't qualify for CXL so I haven't researched the long term issue. But during the last 35 years I have found the level of KCU to be so varied that one doesn't know who to trust. In general I have found the solutions offered are only a subset of those that the person has learned in university, I have learned considerably more from this forum...! Hence if you are so lucky to be in the locality of a consultant who loves the profession enough to keep up with new techniques then you may have options.

This is beginning to sound like "letting off steam" but I was never offered any options. For the first fitting in Stafford I was passed onto a high street "shop" who couldn't even check the quality of the fit, that ended up with infection, the next "shop" told me I should have soft lenses - yes it is funny! Until I moved to Coventry area where just a little more KCU could be experienced, but even in a university hospital the KCU improvement was marginal - the last person I had the pleasure told me at some point I would feel discomfort like if a pencil was pushed into my eye and that would be the end of it for me... well, thank you so much for the expert advice...!

[Jeremy_123]

Hello Libby,

I might not be as experienced as some of the other members are on this forum as regards KC but I can certainly give you my view on CXL as a younger person on here.

For starters I am 22 years old and I was diagnosed with KC in both eyes last year, at the time I was initially diagnosed I was given very little information by the opticians who originally diagnosed the condition and even after getting a referral to a nearby specialist I still hadn't been given all that much info on what KC was and how it was going to drastically change some of the plans in my life. Anyway when I first started researching KC it looked to me like it was not going to be a very pleasant experience one way or another, but now having read all the information I can find on KC and listening to the Consultant who spoke at the last KC group meeting in London about the CXL trials he had been conducting, it seems to be that CXL offers a great deal of potential given that it seems every clinical trial involving CXL has produced more and more positive results.

When I say positive however I don't necessarily mean a direct improvement to the cornea and level of vision but more that they were showing results that demonstrated either some improvement or no worsening. In my case I would be happy to be one of the no worsening patients after the treatment and I say this because at the moment with contacts my vision is excellent and even without them I can still do pretty much everything I would do normally apart from drive. I would seriously consider applying for the CXL treatment if and when it becomes available on the NHS to remove the uncertainty that goes along with KC and not knowing how it could progress from one month to the next or if it is going to be stable for a bit longer or if I'm going to get a sudden increase in the severity of my KC. Whilst I understand that a lot of KC cases never progress beyond the need for contact lenses or glasses part of me just wouldn't want to leave it to chance.

I know there is a chance as has happened to someone on here that the CXL procedure has proved ineffective unfortunately but given the number of times this procedure has been effective in all its various trial stages, I would certainly consider it at my age and especially if I were younger to give me some peace of mind. Part of me would be very happy even if it increased the quality of my vision to a point where I perhaps only had to wear glasses or even soft contacts. For the most part however, I have now adapted very well to my contact lenses and there has not appeared to have been any further deterioration of my KC so I will probably consider waiting on embarking on this procedure until I notice or detect a change in my vision. Hopefully this would not happen before it becomes available on the NHS but if it did then I would try and get myself onto one of the CXL trials if possible.

I would definitely consider this procedure given the long term benefits that CXL seems to offer and there are some days when I would give anything to be rid of RGPs and the way that you can hardly step foot outside your front door without a pair of sunglasses to shield your eyes. I know that CXL may not have this effect on my eyes but certainly all the potential benefits of CXL make me very excited by the thought of what this procedure could achieve.

I hope my views can be of some help to you and your daughter

Jez.

[mwana]

Everyone - me again the newly joined member

I am trying to learn as much as I can - having been in East Africa most of my life I had no idea there were other treatments to Keratokonus apart from the corneal graft which I had in both my eyes. And I still wear gas permeable lenses but I worry that they lenses are damaging my grafts even more. My left eyes feels scratched a lot these days even though I keep adding eye drops.

So please tell me - what is CXL? What does it do?

And what would you recommend for me since I already had grafts in both eyes although my vision was not corrected. I cant really see without my lenses except at very close range.. cant read the TV lines for example without my lenses.

PS. I am really excited to read that there are older keratokonus people like me! And yes my decline was rapid.. never wore spectacles.. I went straight to contact lenses then grafts in 3 years!

[rosemary johnson]

Mwana - CXL = collagen Cross-linking, and is also known as C3R = corneal collagen crosslinking with riboflavin.
There are articles about it accessible from the home page of this site.
It is a new treatment which it is hoped (it is still in clinical trials stage) will slow down the progress of KC if caught early.
Once you've had grafts, it's a bit late, alas.
Back to thread..... I suppose it is easy for people looking back to say "Yes! I'd have gone for it!" because we know how much our eyes have deteriorated since the time when CXL might have been useful.
But we wouldn't have known then..... for example, if I'd been offered the treatment back around 1976 when I was diagnosed, and told I'd have had hydrops in both eyes within 6 years, be registered partially-sighted 25 years on, and 32 years on have a (some people might say "overdue") graft operation that turned into a disaster, then deciding to try CXL would have been a no-brainer.
But there's loadsa people out there diagnosed many years ago who got corneal lenses, settled down with them, get on OK with them (well, as OK as anyone does!), can see well enough to drive, read, work onthe computer, etc etc, no major problems.....
Thing is, ost of those people aren't here, because KC isn't a problem for them, so why hang around here? And no doubt most of those would say "No; why bother?" about the htought of having had CXL wehn first diagnosed.
Rosemary