UK Keratoconus Self-Help and Support Association

Hi All
Not posted for a bit. Son had crosslinking done in left eye in February. Had quite a few problems but these seem to be behind him now so won't dwell on them

Had an orb scan done yesterday but not seeing consultant until August so was wondering if anyone can make any sense of the attached scans. Not knowing what to look at doesn't help understand them but did notice that the left eye thickness was quite thin!!! so not really sure that he should have had the crosslinking done

Any help would be grateful
Regards
Eileen

Hi there Eileen

Glad to read that things are getting better for your son. My experience of Keratoconus is that it really is full of ups and downs. Sometimes you have to grit your teeth and get through the bad stuff. I've never got to the point where you can't at least see some light at the end of the tunnel... and, before anyone smart says "it's a train", no, it is usually genuine daylight ! Well done to both of you.

Specific observations definitely best left to the professionals, hopefully one of them will be along later. My take is that the Pentacam being used is really old. It's not actually able to capture the "bad" eye in any meaningful way. So any readings should be taken with a good dose of salt. I've attached the sort of thing you can get from a more modern piece of kit for reference.

On the subject of "the cornea might have been too thin to consider Crosslinking", a clinician who specialises in this field could say definitively, but the studies I've read do not seem to show that a thin cornea is a contraindication for Crosslinking. It seems to be age and the K reading are the main factors (to quote: "... preoperative maximum K reading less than 58.00 diopters may reduce the failure rate to less than 3%, and restricting patient age to younger than 35 years may reduce the complication rate to 1%"). Abstract of the study is in the link below:

http://www.ncbi.nlm.nih.gov/pubmed/19631120

That said, the K-max reading can be related to the corneal thickness... the thinner the cornea, typically the higher the resulting K-max... anyhow my main point is that it's possibly not the thickness per-se that is the thing to look at, it's the K-max. And any K-max reading from the Pentacam being used for your son's scan wouldn't be too reliable I don't think. If it is accurate, it is quite a bit under the recommended "should-ideally-be-below" value from the study anyway and therefore would not have been a reason to not have Crosslinking done.

In summary, from what bits and pieces I know, there isn't good cause to believe that the Crosslinking wasn't the right thing to do (because the readings from the Pentacam used aren't conclusive and age is possibly as bigger risk factor than a high K-max anyway, if not more so) and compared to this still rather weak evidence for not having the procedure, there's stacks and stacks of pretty strong evidence that it has significant benefits.

Please please please don't beat yourself by thinking you're not doing the right thing. Looking back at nearly 20 years of managing my own condition I do wonder on occasions "should I have done this ?" or "should I not have done that ?". But it's pointless. I, like you and your son, did the best I could with the information I had available to me. It's all any of us can do.

Regardless of the outcomes, he'll remember that he didn't have to deal with things on his own and that you were there every step of the way with him.

Hugs and regards

Chris