UK Keratoconus Self-Help and Support Association

Hi everyone.
I usually only lurk here so I hope its not to cheeky if I ask for some advice.

In March I had an INTAC inserted into my right cornea in which I have severe KC. The operation was the type were only a single INTAC is fitted; in my case in the inferior cornea. The operation and post-op was completely uneventful and the eye healed perfectly. The problem was that the operation has not improved my vision at all and even after the suture was removed my day vision remained unchanged. Since the INTAC was fitted my night vision has deteriorated severely. I now have extremely exaggerated multiple concentric halos; perfectly circular, in my right eye which are so intense they appear to intrude into my left field of vision. If I look at a single point of light in a dark room (an LED for instance) I can swear I can see the INTAC.

My contact lens fitting still went ahead in an attempt to see if my vision could be improved. After trying I think 6 different types of lens (one of which was a bespoke custom Sceleral lens) my opthalmologist is about ready to admit defeat. It appears the INTAC has not altered the corneal topography one jot. It also appears that the INTAC is part of the reason why none of the contact lenses would fit, as its created a raised ridge along the inferior conrnea which is helping to displace the lens.
The final attempt in two weeks will involve the trialing of what I think is a trial lens which is currently being made for me. Its called a 'Bi-concave lens'??

So my questions.
Firstly, has anyone heard of these Bi-Concave lens? I think I got the name right. I was pretty narked at the end of my last fitting and wasn't really paying attention to what my opthalmologist was telling me.

Secondly can anyone here advise what my options may be? Should I request that the INTAC is removed? Should I wait to see if this lens helps and if so what sort of vision should I accept as acceptable? If this lens can be fitted how long should I give it if I do have problems with it? And I know this is maybe a bit beyond everyones remit but does anyone here have an idea of what may help as in 2nd INTAC, C3R etc. My opthalmologist implied that my consultant is considering 'further options'. I know I can ask all this at the next appointment but if anyone can give me an idea of things to ask that would be great.

My next consultation and opthalmologist appointment are the 2nd October which I'm feeling it could be crunch time for all this.
I would just like to say that the consultant and his team and the team of opthalmologists have been first rate and have really given their best for me.

Many thanks.

D.

David, hallo.
SO sorry to hear you've been having these troubles.
When did you have the op? - and have all the specialists now agreed that the intac has taken long enough to settle down that the result is now more-or-less settled?
I've never heard of these new trial lneses. sorry.
As regards a way ahead - if you've actually go tthe appointment booked in two weeks for a fitting for this new lens, then I'd say go to it and see what happens. You might just be lucky. If it porves a no-goer, you're only 2 weeks further on and you can at least say you've exhausted that avenue.
Getting the intac taken out is certainly one option. ANother possibly - possibly! - wold be to put the other semicircle in and see if that improves things by stretching the cornea out over the whole circle. I haven't seen your eye and am not anintac expert - someone who has and is may be able to rule that out straight away. Even if it worked for the shape, it might make for even more of the night-time edge-glare effects.
I gather, BTW, there are other people with intacs who say they can see gleams of light from the edges of the things.
SOme find it a pain, others learnto get used to it. I gather.
As regards acceptable level of vision - that really depends what you need for your life. And how good it was before.
The question has to be: if the intac is removed, will the vision return to what it was before? - after a suitable healing period, of course. Or what level might it return to, and is that better or worse than what you've got now. And of course there is the aggro and risk of another operation.
C3R, aka CXL, is, AIUI, used after intacs to stiffen up the cornea into the new more regular shape it has been stretched into by the intacs. If your intac isn't producing a good shape, I can't see why they'd want to stiffen it up in that shape with CXL - but again, I'm not the specialist and haven't seen your eyes.
Good luck with it, whichever way you go, and do keep us posted. I hope you get a more positive outcome soon.
Rosemary

I am really sorry you have encountered this set back. We all go into surgery with the hope that it will deliver the solution to our sight problems, and when things do not turn out as we had hoped, none of us would ever be anything other than disappointed.

At least the net effect of this attempt is that you are no further away than you were at the start. They may suggest removing the half ring in your cornea. If they do not, I should certainly ask.

Have they begun to talk about other options? I am not sure whether you have ever tried larger lenses, like the scleral. Of course, there is always the 'nuclear option' (a cornea transplant). If they do begin to talk about this, do not be alarmed, but be prepared to ask questions like 'What are the clinical indicators for a graft' etc.

All the best.

Andrew