Crosslinking didn't stop my Keratoconus

[buzain]

This forum has been helping me with my left eye Keratoconus since diagnosis so thanks everybody.

I'm 39 years old and was first diagnosed 6 years ago. I've been living with the ghosting since then without glasses or lenses. Beginning of 2013, things became blurry so it was time to take some action.

I had a T-CAT PRK and crosslinking (CXL) procedure in London in March 2013 for my left eye. I was put on steroids for months to avoid any possible outburst of haze. Two months ago, ghosting started to increase noticeably in my left eye. The right eye started to show minor ghosting too. I never had any problems with my right eye. Topography scans done recently show progression of keratoconus in the left eye. Doctors started to mention a possible repeat of crosslinking.

I was wondering if there are others who did crosslinking that failed to stop the progression of the disease.

Do I really need another crosslinking? Why would it work the second time?

[Anne Klepacz]

Hello Buzain and welcome to the forum.
We've had quite a few people here who have talked about their vision changing for a year or more after crosslinking. But I don't think we've had anyone else saying their KC has progressed after CXL, though of course with any procedure, there are never any 100% guarantees of success. And I think the stats say that vision can get worse in about 3% of people who have CXL done so it sounds as though you're one of that small minority. I hope someone who knows more might come along with more information.
All the best
Anne

[andytraill]

Hi buzain,

You say T-Cat so was that at Accuvision? I'm surprised, to an extent, that if you could get by without glasses or lenses they went down the T-Cat route. Did they scan you more than once? With for example a 6 month break between?

It might be that you were very early stage and so being "worse" after is only a relatively minor change? As Anne says perhaps due to stabilisation after the CXL itself.

Cheers,
Andrew

[buzain]

Anne,
Thanks for your response. I guess I'm a minority in a minority.

Andrew,
Yes the operation was in Accuvision but I was following up with a doctor in a private hospital. My vision was blurry by early 2013 so I don't think my condition was minor by then. I went by without glasses for years mainly due to the slow progress in my left eye and the perfect vision with my right eye.

I don't live in the UK and I was in London for two weeks only so doing multiple scans with a 6 month break was not an option.

The ghosting in my left eye is increasing noticeably day by day for the last two months and my right eye is picking up too. A couple of topography scans done recently also show an increase in the cone-shaped area in my left eye. It looks like my eyes are on overdrive. Lots of online resources talk about progression stopping by late 30s. Not for me unfortunately.

[caroline6505]

Hi. I has CXL in both eyes 2 years ago. Although my left eye is stable, my right eye is not and it is deteriorating fairly rapidly (bulging and is now very thin).

[longhoc]

Hi Buzain

It would definitely be worth asking the clinician who performed your Crosslinking procedure what the degree of progression is and why it is seemingly occurring despite your having what should have been a preventative measure. It could be that you were a marginal case for meeting the criteria for Crosslinking (e.g. your cornea was quite thin to start with before you had it done) in which case the outcomes are more likely to be poorer.

Generally, from what I've read, the sooner the procedure is performed, the better. That's not to say that if a patient is on the boundary of Crosslinking being contraindicated, it's certain to be unsuccessful, just that the poorer condition of a cornea the greater the chance of Crosslinking not working.

Let us know what you get told if you can -- in spite of many many years of Crosslinking being performed, we don't get nearly enough long term real-life reports about how it actually works for people.

Best wishes

Chris

[Lynn White]

HI Buzain

Just to explain to others who may not know what T-CAT is.... This procedure is a laser correction to improve refractive error done at the same time as CXL.

This has two ramifications:

1) The procedure does involve removing some corneal tissue, as any PRK procedure does, and therefore will make the cornea thinner and slightly less stable biomechanically. You therefore cannot say that the CXL procedure, per se, has not worked since you did not have that procedure on its own.

2) It has also been shown by the long term follow up of CXL patients that improvements and changes to the corneal shape can still be found up- to 8-9 years post op. This means that any refractive surgery done at the same time as CXL may well be affected later by the continuing changes in the cornea brought about by CXL.

I was at a conference this year given by the Royal Society of Ophthalmologists and Theo Seiler, who first developed CXL in Germany, gave examples from his own clinic where he did refractive surgery such as PRK or INTACs at the same time as CXL. He showed that a year or more later, the continuing changes brought about by CXL "undid" some of the refractive correction and vision went worse. His opinion was that any refractive surgery should be done at a much later date after CXL, once the surgeon had a good idea how the cornea was settling. Doing it at the same time meant that you had no idea what changes the CXL would bring about.

If you are deteriorating, then repeating CXL has a good chance of stopping the progression but I would avoid doing any more PRK.

Interestingly, one patient of mine did progress markedly after CXL... he was on the borderline for it working anyway..... and the surgeon could not repeat CXL because the cornea was now too thin. I saw him 6 months later and the cornea had settled and improved dramatically. There is so much we still don't know about CXL!

Finally, I really do not subscribe to the "KC stops in your 30's" view as I have patients who progress in their 50's! The more we know about KC, the more we find we don't know!

For anyone who has been told it will stop naturally, don't take this for granted and do keep checking your eyes.

Lynn

[Grant]

Finally, I really do not subscribe to the "KC stops in your 30's" view as I have patients who progress in their 50's! The more we know about KC, the more we find we don't know!

Amen - as someone who was only diagnosed in their 30s and has yet to see it stabilise now at 44 I can totally empathise with that statement.

[caroline6505]

Hmmmm, I researched having CXL, thought very carefully about it, got it done in both eyes. I have one stable eye, but the other continues to deteriorate - thickness is now 377. Apparently intact is a no-no and the odds aren't great for a graft now. Heard lots of positive things about CXL, but interesting reading (and now from experience) about cases where it's effects are limited or negative.