UK Keratoconus Self-Help and Support Association

Hi,
I diagnosed with Keratoconus Arpil 2010.
My keratoconus was in stage 1 in left eye and right now my right eye is unaffected.
As a result , I was put under observation to monitor progression if any
Over the last 11 months my power has not changed, but my orbscans do show some variations in minimum corneal thickness(535 to 527 to 504) ,so does the angle measurements.
I have two different physicians who with two very different opinions(one recommends c3r the other does not)

I was curious to know if there were any signs I could look out for to determine progression is really happening, would it be apparent to me if it was ?

Also is it a good idea to go ahead with the C3R, even though there is no progression, due to the unpredictability of the disease?
I have been living with a dilemma for quite a while

Thanks
CDS

Hi Sarkac,
It's good that you're getting good vision with specs most of the time and that your KC has stayed mild for nearly a year now. As you say, KC is unpredictable, but for many people it won't progress very far and so have a minimal effect of their life. So monitoring your KC sounds exactly right and the hospital will be able to pick up any changes. As for crosslinking, any procedure has some risks (and no one knows whether there might be as yet unforeseen effects 20 years down the line, as it's relatively new). So while your KC is stable, there's really no need to rush into what might be an unnecessary intervention. The minimum corneal thickness for CXL is 400 so you're way over that with very little change so far. With luck, things will stay that way. It's easy to get the idea from forums like this one that KC is nothing but trouble as most people post when they have problems. But as Andrew says in reply to your other post, lots of people with KC live a perfectly normal life.
All the best
Anne

Hi Sarkac

I answered your other post before seeing this one.

Actually, no-one can give you a completely definitive answer as to whether to cross link or not. Opinions do differ on this score greatly. Many ophthalmologists will say cross link whether you are obviously progressing or not because they have seen people progress very suddenly. Others will say wait until you do actually progress because they have seen people go for years without changing.

One ophthalmologist did point out to me that many people feel better after cross linking because they can "stop worrying". Although this is not a real medical reason to cross link, it is, for some people, a real and important issue.

It is important to realise the more people you ask, the more opinions you will get!

Lynn

Hi,
Cannot stress on how much i appreciate your replies!! and i am really glad i found this forum, and its making me a bit stronger

Well i have decided to hold off C3R until I see definite progression.
While i know that the rate of progression may vary from person to person , I would really like to come up with a robust plan to catch the progression when it happens at its earliest .

I would be doing corneal mappings and orbscans every 6 months (2 different hospitals) and also do a weekly observation of whether my vision is changing.
I would like to ask anyone who has been through a stable KC and then a progression , is there anything that I can watch out for to know if my KC has restarted its progression ?

cheers
CDS