Collagen cross linking questions

[rosemary johnson]

I think one of the problems with CXL is - as with lenses post-graft - that it can take some time for your eyes and your vision to stabilise.
SO you may be able to get a contact lens in quite quickly after the op, but you could find the prescription changing so you need a new one with monotonous regularity.
Which could get frustrating (trying to hit a moving target), and expensive.
They say about 6 months to stabilise after CXL, though it varies a bit from person to person.
Rosemary

[chris_irwin89]

Hmm, i might have to seriously consider whether or not to get this done this summer or put it off for a while. I was not told that it was such a long recovery time before now, i was given the impression that it was like 1-2 weeks. I have made plans to do stuff this summer and not being able to wear rgp in one eye is a pretty big downer. Thanks for your help guys. I will have to discuss it with my consultant and talk about the posibility of kerasoft lenses.

Also Lynn, i am due to have it done on one eye for the time being, with a view to getting the other one done in the future.

[Lynn White]

Chris

If you are only having it done in one eye... then what I can suggest is that you have a powered bandage lens supplied. This has been very successful for many of my patients. It will balance you and probably enable you to carry on work. Bandage lenses are usually Silicone Hydrogel disposables.

Length of time you will have poor vision is not written in stone,.,. I do have patients who were fine after 2 weeks but others who were not for around 2 months. Trouble is we don't have a crystal ball!

Please do discuss this further with your professionals before making a decision.

Lynn

[GarethB]

Chris,

The recovery time for 1 - 2 weeks is probably the time the epithelium takes to grow back. With grafts we often get told that recovery time is 2 - 6 weeks but that is the time it takes for most to be fit enough to return to work. Unfortunatly many consultants forget about the need we have to see.

You'd be surprised how easy it is to adapt to one eye. For those going through the graft process, they have to do this and in most cases have to go 12 - 18 months before getting useable vision back. I had my second graft done in the summer holiday between the first and second year at Uni. I was soon back to working on a farm and doing all my usual pre-graft activities bar the playing rugby. My highest achievment that summer was narrowly missing out on getting to the finals of a rally scholarship by 0.3 seconds.

What about starting now to try going without a lens in the eye that's going to get the CXL and have a go at adapting to life with one eye? If that works out then you can have the CXL and continue with the summer holiday activities as you originally planned?

Having spent much of the past 4 years relying on only one eye, we don't really need the two! Our eyes are only in the position they are to get good depth perception for hunting which I've found not be required when shopping down the local super market.

Without lenses my right eye does not see the eye chart and the left only sees about 6/30 and I find this to be quite useable vision, only activity I can't do is drive.

Just playing with a soft lens that has a slightly different design and I can get 6/15 which is below the driving standard, despite that I've been doing all sorts of stuff with my daughter including puting clasps onto necklaces for her.

I'm not trying to talk you into or out of having the CXL, just to give suggestions on how to manage during the recovery period with as little impact on your summer plans as possbile becuase it appears to me from your posts that CXL is something you want to have.

How have others that have had CXL managed during this initial recovery period?

What were the limitations if any that you found?

[chris_irwin89]

The i have actually been going without a lens in one eye (wearing a soft lens instead of an rgp) for the last week as i managed to break one of them and it hasn't been good to be honest. I find that i prefer to have bad vision in both than to have totally unbalanced eyes. The problem is that i am at the point where soft lenses really don't do much at all for me, nor do glasses. But rgps give me really good vision such that i am able to read down to the read line on the chart and past it sometimes, which i haven't been able to do. I really am not sure if i can cope for 3-6 months only wearing a soft lens in one eye and rgp in the other.

Have other people had a problem with using computers after the surgery, this aspect worries me as i have to use a computer for my uni course.

[Lynn White]

HI Chris,

OK - this has to be a decision time doesn't it? Your questions have really moved out of the "What can I expect" arena to "is it worth the disruption to my life to do this" area. No-one here can give you the answer to that because we do not know your circumstances in enough detail - only professionals you consult can tell you that.

What you have to consider is WHY you are going for CXL. As it is not a cure as such (as in it will not return you to your original state) what really counts is whether you are progressing or not. It sounds like your KC is reasonably advanced, judging by your vision difficulties, but if you are not actually progressing actively at the moment and you feel that CXL and its accompanying visual difficulties post op will cause you too much disruption at a critical point in your life, then you should consider putting it off. Wait until you can plan your life around possible disruption - because, after all, no-one can predict exactly what will happen post op.

On the other hand, if you are progressing fast and your corneas are thin, so that there is a danger if you put off CXL for too long you won't be able to have it - then whatever the disruption, you really need to come to terms with the consequences of the op. Its amazing what you can adapt to if you put your mind to it. Knowing the KC community as I do, I can safely say the majority manage to get around and function "one eyed" at various points in their life - they simply have to. Gareth succinctly points this out in his post.


At the moment your brain is saying to you "Hey- sort out that eye - there is something wrong!" That's perfectly normal and a defence mechanism to make sure you pay attention to possible problems. After a certain time though, the brain gives this up, assuming it is now part of your life and adapts to this one sided vision. What's even better, this adaptation is stored away for future reference, so that if you go back to your RGP and get better vision, if you have to leave it out again, the brain rapidly falls back on its memory of adaptation.

However, if you fight this adaptation, by closing one eye and then the other to check out differences or keep getting frustrated at the blur intruding on your computer screen and telling your self you won't adapt.. the process will take much longer. It is very true that positive thinking gets you through a lot of crises and aids health recovery whilst negative thinking can make things a lot worse.

You ask if other people have problems using computers after surgery. The blunt answer is - yes, probably all of them! You might as well ask - do other people have problems kicking round a ball after having an operation on their foot?! You are having eye surgery, the side effects include being bothered by bright light and glare.... which pretty much covers using a computer. Most people adapt by using the computer in short bursts and I have patients who carried on with studies straight afterwards - often by using audio books and recording lectures.

As for using a soft lens, if a normal soft lens simply does not give you enough acuity - and sometimes this is worse if the eye you are having done is your dominant eye - then consider getting a dedicated soft lens for keratoconus fitted which will give you better vision. However, even that will not stop the fluctuations in vision while the cornea is settling down.

In the end you have to balance a short period of disruption to your life to the over all benefits - if there are any, As I said, if you are at all worried about the after effects, make sure the CXL is the best thing to do. If you are not progressing at all, then at least consider delaying until the time is "right"... but I think you will find that there is no real time that is "right " for these things!!

Good luck!

Lynn

[Gabriela Neal Gonzalez]

Hi For me looking at a computer screen was'nt really a problem once I had the lenses back in, but it differs for everyone. For two days after I had the procedure done I was walking around the house with sunglasses on if it was bright or if i was wathching the tv. Are you having one eye done at the time? If so I would have the worst eye done first. Normally most people can put their RGPS in after 6-8 weeks however, only put them in once you are sure your eye has settled and you feel confident that you've recovered. I think that the procedure is a good idea, if it hadn't had it done when I did then I would never have been able to have it done, so I'm really glad I had it done to stop my eye sight deteriorating even further. If you want to know anything else you know where I am
Gabriela.

[Becky Fleming]

Hi, my son had cross linking in one eye a year ago at the start of the school holidays. We were very surprised at how quickly the healing took place and his vision was pretty reasonable within a couple of weeks and by the time he was back to school 6 weeks later he was able to start wearing his GP lens again for short periods - the prescrip. changed a wee bit over the next month or two but it did not stop him studying intensively, with the daily use of computers, for last school year - he wasn't driving then, but has since started.
We feel it has been really beneficial as the eye has stabilised since the very simple op which I sat in the room and watched , he said most uncomfortable bit was the clip to keep the eye open for the light - bit like some dental procedures

[Andrew MacLean]

Becky

thanks for that, and welcome to the forum.

Give your son the best wishes of everybody here!

Andrew

[chris_irwin89]

Thanks for all your help guys, I spoke to the consultant who confirmed that it would be a fair while before i could wear rgps. I decided to postpone the surgery until next summer, and i will be going back to have a couple of consultations in the mean time.