UK Keratoconus Self-Help and Support Association

Hi there,

Last September I underwent corneal cross-linking for one of my eyes which was diagnosed with having quite "severe" keratoconus. I've just (1 month ago) undergone a the same procedure for my other eye which had early-moderate keratoconus. In about 2-3 months I'm going to be fitted with a RGP contact lens for my worse eye, and probably something similar for the other one too. I wanted to hear from others who have undergone CxL with regards to their "recoveries", if they've noticed a halt to visual-deterioration, and whether or not wearing contact lenses is "safer" after have undergone CxL, since this should theoretically stop or slow the process of keratoco..

I would really appreciate some feedback, as I'm a bit anxious about getting contacts after having read that they can speed up deterioration.

Cheers,

Seb.

Seb

Welcome to the forum.

The received wisdom used to be that they would not offer CXL to anyone with a corneal thickness of less than 400 microns. I wonder whether your first eye experience was a departure from this, or perhaps you were still above this threshold?

Anyway, I am sure that there will be someone along in a moment who can shed light on your questions.

Every good wish

Andrew

Hi

Sorry can't offer any advice other than I was diagnosed with KC over 10 years ago. Thought things had stopped until fairly recently. I went private and was told that I have advanced Pellucid Marginal Degeneration in both eyes (advanced in right eye, not so bad in other). I'm booked to have both eyes crosslinked on 22 June. The advice that I was given (Sheraz Daya/Centre for Sight) is that the best outcome of crosslinking is to stop KC progressing and that the effects are permanent. Three to six months thereafter, I'm due to have a wedge resection done to the right eye, subject to assessment after the crosslinking. My understanding is that is the cornea is below a certain thickness it may be possible to use a hypotonic solution whereby water helps to thicken the cornea artificially - during the crosslinking process the cornea hardens. Apparently corneas tend to appear thinner initially but become thicker after a short period.

Caroline.

Hi Andrew and Caroline,

Thanks for the responses. My cortical thickness was slightly above 400 microns for my right eye, and was deemed suitable for corneal cross-linking. Now several months later, I have been fitted with contact lenses in both eyes, and am finding them not to be any trouble. My worry however is that long-term wearing of the rigid contact lens in my right eye may hasten the worsening of my eye, due to the constant friction caused by the lens (even though the eye has been cross-linked).

If anyone has had experience of wearing rigid contact lenses post-crosslinking, I'd be very happy to hear about your experience.

Best,

Seb.

Hi Seb

Once you have had crosslinking, your cornea behaves very much more like a normal cornea. There have been follow up studies with RGP wear after crosslinking and some workers have tried to improve the shape with RGPs. Have a look at this paper....

Orthokeratology and riboflavin-UVA corneal collagen cross-linking in Keratoconus Antonio Calossi, OD, FBCLA, FIACLE; Ferdinando Romano, MD; Giuseppe Ferraioli, OD; Vito Romano

I also have to say I have had excellent results with soft lenses after CXL as well.

Lynn

Hello there.

I hope everything is going okay for you

My personal experience is this.

I was fitted for an rgp on the nhs a few months back (after having been diagnosed in januray) and it never quite fit right.
I then had CXL done in my left eye, which was by far the worst, (i had a bad experience with the nhs consultants, so just decided to go private and have cxl done) and my pre cxl vision returned in about 2-3 weeks.

After 3 months, ive gone from only being able to read the top 2 lines of the eye chart with my left eye before having cxl done- to now being able to read the 2nd bottom line, and some of the bottom line.
Its been quite a dramatic turn around for me.

I also ended up sacking off the nhs in regards to having an rgp fitted, as after seeing a seperate optician...it turned out the rgp theyd given me just was completely the wrong fit which is why i was in agony and the optician is now sorting out a hybrid lens going forward.

Though he says he doesnt think i need a lens at all, but i am still suffering from ghosting.

Sorry for the long winded blurb, hope it all works out for you

Hi seb

Just wanted to ask you a few questions

Had cross-linking on my right eye, Which is my better Eye. They said that it was too thin for left.(330mcns)
Procedure was a week ago. How long did it take before you can get an rgp fiitted after cxl?

Many thanks

Irfan

When I first started wearing contacts they were RGP lenses back in the later 70's early 80's. I never had KC but developed corneal ectasia after lasik. I had cross linking on the left eye in 2008 and it did seem to stop the progression of the ectasia. The cornea did change a bit after having a cataract surgery done on that eye. I have been wearing an rgp lens on the right eye for a few years with moderate ectasia and the left eye of course had a more pronounced protrusion/ectasia. that eye uses a semi scleral lens with good comfort. From what I have read is that if you don't scracth your cornea up and don't overwear lenses if they are not comfortable and maintain your check ups that the rgp lenses should be ok to wear and are supposed to slow the progression of KC and ectasia. I know that in my right eye the prescription has not changed in dour years with a 12mm rgp lens. The semi slceral lenses are very comfortable too if you tey those. Good luck.

Brad