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Crosslinking...? Only one eye and that has kerataconus!

Posted: Tue 31 Jul 2012 9:37 pm
by Nickysells1
I only have sight in one of my eyes and that is kerataconic

In the last 15 years this has been controlled with RGP lenses which I have suddenly
Become intolerant of. I've moved to kerasoft lenses but the vision is not so clear and have been researching
And are going for a consultancy at accuvision

Can anyone offer suggestion/experience of cross linking? I'm guessing it's less risky than if I needed a transplant eventually...? I don't want to risk the losing the one good ish eye!

Many thanks

Nick

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 8:33 am
by longhoc
Hi there Nick -- and a big welcome to the Forum

Can you supply us with a little more information -- you mention that you only have sight in one of your eyes. Is that due to very advanced Keratoconus -- or some other disease process ? Or accident or similar ? I guess from what you wrote that there's no possibility of restoring any vision to that eye ?

Not an easy decision you're faced with. Normally I'd say to avoid surgery until everything else has been tried, including crosslinking. But if you're unable to restore any vision in one eye, then you have to think long and hard about what is best for your one remaining "good" eye.

Best wishes

Chris

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 8:44 am
by Nickysells1
Hi Chris

Thanks for the reply

I never had vision in my right eye. Something occurred before
I was born by all accounts

I'm just working on the principle that cross linking maybe
Less risky than grafts as well as less time away from work ect
But needs to be done earlier on in terms of disease progression?

As I'm 37 I've a long time to go.....don't know what they may develop
In the next few years too I guess?


Thanks

Nick

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 10:02 am
by longhoc
Hi Nick

Oh crikey, you must really feel like you drew the short straw sometimes -- no vision in one eye due to one thing, then you get Keratoconus in the other eye. I swear, I'll never compain again... Okay, won't complain quite as often :oops:

Right, the "decision tree" for electing for crosslinking is usually as follows:

1) Unequivocal diagnosis of Keratoconus -- you have to be sure that it is Keratoconus (usually easy but not always). In your case that's a "check" though, so we can move to the next stage
2) Conclusive evidence that Keratoconus is actively progressing. The only thing that crosslinking brings to the party is to (hopefully) halt progression. Some patients have reported visual improvements, some have lost a line or two on the Snellen chart, some are neutral. So there's no point in opting for crosslinking with the intention of improving vision. It's nice if it happens but that's not a guaranteed outcome. Sometimes you're left worse off.
3) A rate of progression which both the ophthalmologist and the patient considers to be a cause for concern. Here is where it might be tricky because ideally you'd want two reference points 6 months (minimum) to 12 months (ideally) apart. The snag is, if you've not got this information you have to wait for the time to elapse to get it. But with luck, whoever is looking after you in the clinic you attend already has this information. What you'd need to think about is what progression, if any, is too much for you to gamble on.
4) A suitably thick cornea. Indications are still evolving as to just how thin your cornea can be before crosslinking is too risky. Figures I've seen are in the range of 350 microns but that might not represent current clinical thinking. And that is for "eip-off". It might well be different for "epi-on". Really best to discuss this with the ophthalmologist after they've got some test results. For you in your unusual situation, your risk tolerance may well be less. For example, let's say you're 350 microns which the consultant says is at the lower boundary for what they'd normally consider, with anything less being a contra-indication. If you had two working eyes, then you might think that taking everything in to account, it isn't an issue. But you don't, so a marginal eligibility for crosslinking might be too close for comfort for you. Definitely, then, go through this aspect with the consultant (if you go as far down the line as that).

As I said, you've really got my sympathy here. I don't envy having to make the sort of choices you might have to make. In many ways, sometimes more choice (i.e. new treatments becoming available) are a mixed blessing. Yes, you've got some options which you didn't have before. But never, in my experience with Keratoconus, has any clinician said to me "Chris, you absolutely have to do X- or Y-". It's always "Well, you could do this... or you could do that... or you could do nothing..." with a risk/reward trade-off that ultimately we have to sort out for ourselves. Hopefully the points I've given above will give you some idea of the constraints around crosslinking that you need to work out if they apply to you. Could be that it's simply not a viable option for you anyway. If it is though, by working through the above, you'll be able to figure out whether it is the right solution.

Ask away if there's anything you'd like to know that I've not covered.

Best wishes

Chris

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 1:01 pm
by Nickysells1
Thanks Chris

Appreciate your honesty

I have reviewed my latest kerasoft 3 in the post today
Which has improved my vision significantly. I am confident to
Overtake on a country road now for example. I can get the extra line
Below the minimum driving standard on the chart

I go bal to jimmys in a few weeks for a follow up so will discuss with my
Ophthalmologist I think then

It's such a worry when my lovelihood depends on driving. I sell motorbikes!

I'll keep an eye (no pun intended) on the forum from now on

Many thanks and kind regards

Nick

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 5:11 pm
by andytraill
Hi Nick,

To follow on from what longhoc said while crosslinking does carry risk, but in the cases where KC is progressing crosslinking (to me at least), even epi-off is a no brainer (if you have two reasonable eyes, doing one after the other).

However a bit similarly to you my right eye is quite bad (bit of an understatement...) and so my left is my (only) "good eye". I had a consultation for crosslinking my good eye recently and was recommended to wait for "epi-on" to mature. Mainly because "epi-off" can take a long time to recover your vision from and if you're relying on one eye the period of recovery could effectively make you partially sighted/blind. I'd suggest getting a consultation with someone who offers or is planning to offer "epi-on" crosslinking (less history but pretty much instant visual recovery, also apparently better results).

I have to be completely honest and say I don't know where is/planing to do "epi-on" though Moorfields might be having a trial soon and the Wellington Eye Clinic are, I believe, keeping tabs on it. Some overview info - http://www.lasikofboston.com/UserFiles/Dr%20Hatch%20Epi-On%20v%20Epi-Off%20Article.pdf

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 5:35 pm
by Lynn White
HI Nicky

First, if you are changing from an RGP lens into a soft lens, it takes quite a few weeks for your cornea to settle down. The rigid lenses reshape your cornea and when you come out of them, its takes for them to go back to their natural shape. That's why the replacement lens was a bit clearer.

I have to diverge away from what Chris has said here a little bit about cross linking though. Many of my patients have had cross linking who are not actually progressing - participially ones on your age group. What they have found is that the day to day fluctuation in vision that goes with natural changes in a soft cornea (which is essentially what Keratoconus is) is much reduced by the cross linking. They have also noted improvement in vision quite quickly. This is more the quality of vision rather than being able to read lots more lines on the chart.

Having said all that, once your cornea has settled from coming out of the RGP and you have he best possible vision from your contact lenses. its worth waiting to see if your cornea remains stable or not before jumping into cross linking.

Lynn

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 6:53 pm
by Nickysells1
Andy

Forgive my ignorance but what is epi on and epi off? :oops:

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 6:55 pm
by Nickysells1
Thanks Lynne

I think I will wait for sure and see how it settles.

The new lens was a stronger prescription. I didn't use lacri lube in
My eye for the first time in years last night so that may
Have played a part too? My eye actually seemed more moist!

Re: Crosslinking...? Only one eye and that has kerataconus!

Posted: Wed 01 Aug 2012 8:06 pm
by andytraill
For riboflavin to act as a catalyst in this process, it must first be absorbed into the corneal stroma (where the cross linking takes place). Because the corneal epithelium acts as a barrier to riboflavin absorption, it can be removed ("epi-off") before treatment with UV light. However for "epi-on" a new form of drops is used to go straight through the epithelium. This means that the vision instability caused when waiting for the epithelium to regrow and stabilize is negated and the risk of infection is reduced.