CXL

[KIRST]

Hi folks,

A wee question that maybe Lynn could answer??

I had asked my consultant about CXL. After having a look at my previous eye tests he has now told me that he wouldn't consider it necessary at the moment as my condition has stayed relatively stable since jan 2011.

He had also said that as soon as there is a definate change then he would reccommend the procedure then but if I still wanted to go ahead at the moment then he would be happy to carry this out.

I had assumed that the earlier you got this done the better? Could someone maybe shed some light on why he has taken this decision?

I suppose I should be happy he is not wasting my money but I had geared myself up for this procedure and I am also scared incase by delaying it my KC gets a lot worse in a short space of time. It is quite mild at the moment

Thanks

Kirst

[fatar760]

i had it done in June and wish I had had it done earlier. One thing to remember about CXL is that it takes 3 months for the cornea to settle (at least this is what I was told). So if you got it done tomorrow the KC could still progress for 3 months before it settles.

My advice is to get it done asap and don't live wishing you had had it done sooner,.

[liam82]

I agree with the above poster. The sooner you can get it done the better.

I had it done in may,for my left eye, and at that time i could only read the top 2 lines of an eye chart with my left eye.

I had a follow up the week before last, and i can now read the second to bottom line on the eye chart, and pick out letters on the bottom one (without lenses or glasses).

Obviously its different for everyone, and every experience of it unique - but for me its been a godsend.

I just wish id done it alot sooner.

Im sure better placed people than myself, who are more experienced with KC, will be along to give a much better opinion shortly

[caroline6505]

Hi

I guess your consultant is playing it safe. The condition can be progressive, but it can also stop, and so if you're stable or the condition has stopped, then there's no need for CXL (it can be fairly expensive and it's no walk in the park). On the other hand, if after a period of time it is clear that the KC is still progressing, then there's clearly benefit.

Best wishes.

Caroline.

[Lynn White]

Kirst,

This is a difficult one.... any surgical procedure has risk and although CXL is proving to be very good as far side effects go, there have been a few cases of infection and scarring post op. Therefore, your surgeon is being cautious in assessing your risk of progression, as he knows full well some patients only progress so far and then stop. Why risk a potential problem when doing nothing would result in you being OK?

However..... it is equally possible that someone who seems stable could suddenly progress - I have certainly seen that happen with all the resultant issues associated with that. I have also seen patients who have hedged their bets and had one eye done and not the other. Mostly they have ended up progressing in the non crosslinked eye while the crosslinked one has continued to improve.

My overall opinion, having now followed up many people post CXL, is that results are positive and improvement continues for several years. One of the main issues is the vision fluctuation post op, which disturbs work etc.

Some patients of mine have had it done for the sheer peace of mind and I fully understand that!

Lynn

[KIRST]

Thanks for your reply Lynn (and evryone else).

I think I might wait until my next appoint at hospital which is in Feb and get fitted with the piggy back lenses meantime - although I manage fine with my glasses at the moment so don't think myself the lenses are necessary yet.

To be honest, I wouldn;t be looking at getting the procedure done until after xmas anyway. Don't want the hassle with possible fluctuating sight in the festive season. My eyes sight will be bad enough with the over indulgence at the xmas parties etc lol!!

I just don't know what to do for the best. Will have to give it some thought

Thanks again

Kirst