(Intacs) Excellent experience at The Centre for Sight

[jayuk]

As Andrew said, I had to have both.

Using topography graphs, the KC did not progress in the 18-22 months that I had the C3R, but in all honesty my reason to have c3r was to buy time for my first graph to heal; and so it met my objective. The values on the graphs did change though, but the KC did not progress past the point pre-c3r. Was it c3r that did this? was it my genetic KC switch that was off? noone can say. But from all thats available in term of data, Id like to assume it was C3R that helped.

I didnt try refrecting or getting a lens in that eye, as the scarring was too much and to be honest I am sick to death of contact lenses, so given the choice I wanted to avoid them.

[GarethB]

Jayuk,

What you have omitted too is that your KC was more advanced than those that have taken part in controlled studies.

That is one the reasons I was advised C3R was not for me due to the aadvanced state of the KC in my right eye.

C3R like any other treatment is just another management strategy.

I think your case is still a positive one as it shows you can buy yourself time between grafts when necessary.

[jayuk]

Gareth

Totaly agree...which is an even more reason to have some faith in c3r along with the data thats currently available. As during the initial consultaion I was told that my KC was advanced and it may not even have an effect, and what with the fact that I also opted NOT to have the epithelium removed.

J

[Louise Berridge]

Perhaps it only works on an eye if it has not already progressed past a certain stage.

I was informed that grafts had not been undertaken on C3R eyes by those that initiated the treatment, in Dresden, and by a couple of eye clinics. Of course there will always be conflicting opinions to some extent.

[GarethB]

Louise,

To the best of my knowledge you are correct grafts have not been done on C3R eyes. My understanding is because mild/moderate cases are selected for treatment and not advanced cases such as mine or Jays.

Mild to moderate cases are certainly the people selected for trials and for these studies strict acceptance criterea are applied and I have yet to see a study that satisfactroly states the criterea patients are selected for a particular study.

We are now in a situation where C3R is becoming more wide spread and I do not feel the data will be truly representative until the 'general KC population' has been treated unless acceptance criterea for treatment is applied as is done for intacs.

Intacs have set criteria because the cornea needs to be a certain thickness for the intac to start to have benefits and the cone needs to be in a certain place otherwise you always see the nitac post op which can give further reduced vision.

[Louise Berridge]

Hi Gareth,

Yes I totally agree with your comments.

There are doubts over it's long term effects, but for the current KC population, it provides some hope of halting the disease, for those at a suitable stage.
Personally, at present I think the potential benefits outweigh the risks, if the KC is shown to be progressing.
As you'll know, the best results have been achieved with a combination of INTACS and C3R. I don't think there is any evidence, like that for C3R, to show INTACS halt progression alone.

[jayuk]

Louise

Agree, there is no data to suggest Intacs will stop. But I dont think there ever will be, as the main aim of Intac, Ferrara rings et al was to change the shape of the cornea so a lens could be better placed on the cornea. The issue with Intac, is what happens over the longer period if the KC progressed and can the intacts protrude through the cornea. Thats an extreme case. but thats what many ppl were concerned about...although I must say that they are removable if need be.

J

[GarethB]

The good thing about both procedures together or seperatly is that other treatments options are still available.

With a graft there is no going back and many still need the contact lenses.

[Andrew MacLean]

I can't remember where I found it, but while the site was down I read about someone who was offering C3R post-graft. I am not sure whether this was to help stabilize the host tissue.

I'll go hunting for the URL and post it when I find it

Andrew

[Louise Berridge]

I had a check up today, at the LCRS. Mr Jory had returned from a conference in California and apparently they didn't come to a conclusion as to the merits of C3R on a healthy eye.
Anyway, while I was there having INTACS checked I had an ORB scan in my supposedly KC free eye and it was detected. So off next Tuesday to have the C3R again in the 2nd eye. Very down as I hoped I'd get a bit longer before it appeared. Not sure how I will manage on my bad eye alone, for a week or so.