Desperate for advice. Please help.

[KCsufferer]

Hi all,

I am a 25 years old, and I have suffered from KC for about 9 years now. During these nine years I've suffered from ghosting problems even with 15mm scleral lens. Last year, in an attempt to fix some of my ghosting issues, I travelled to LA to undergo Intacs + C3-R + CK. Initially, the results were positive. I noticed a reduction in ghosting (although it didnt go away completely) and better uncorrected vision (although it was still terrible). I was refitted with a new 15mm scleral lens from my optometrist shortly after, and I noticed that my vision was sharper than before. However, over the course of the past year, my day vision has deteriorated to the point where it was pre-Intacs. Its exactly the same as before. My night vision is even worse than it was pre-Intacs, as I now have previously unseen starbursting/glare and the reflections from the Intacs now muddle my peripheral vision.

I have a few questions. Does anybody have any experiences with intacs removal? If I remove them, will the nighttime glare go away?
Has anyone tried to do T-PRK + CXL after removing intacs? Can they be done on the same day? I realize that finding someone who has gone through this specific path is a long shot, but any advice would be appreciated. I believe my corneas are relatively thick (480 microns for left, 500 microns for right), which is why I think I would be a good candidate for T-PRK. If T-PRK doesn't work I am fully willing to do DALK. This ghosting feels unbearable on a day to day basis and has made me severely depressed over this past decade.

Thanks,
Dev

[Lia Williams]

Hi Dev,

Welcome to the forum.

Ghosting can be big problem for most people with KC and finding the best lens to minimise the ghosting can take time. It's not helped when one reads the 6/6 or 6/9 in the clinic and is told you've got a good fit and good vision - but it doesn't seem like that in real life. There are lots of different lenses on the market and what suits one person doesn't suit another.

You ask about having T-PRK and CXL. I believe that CXL and C3-R are similar procedures so if you've had C3-R I doubt if CXL would offer any additional benefit. I'm sorry but I don't know anything about T-PRK so I can't comment on this.

As you were refitted with new lenses shortly after your Intacs + C3-R + CK procedures it could be there have been some minor changes to your eyes and new lenses are required - it would certainly be worth investigating.

Lia

[Anne Klepacz]

Hi Dev,
Just to add that if you put Intacs+removed into the search on this forum, you'll find several users who have had Intacs removed for a variety of reasons. Whether any of them still visit this forum, I don't know, but let's hope so.

[pbsiakht]

I also travelled to LA to have intacs and c3r. The intacs have made fitting very difficult.

[britdaz]

I dont understand most of whats been posted, I have had KC for 15 years, my constant years of ghosting was resolved by using a lens with a prism. This lens is weighted and is my right lens only, but the difference it made to my vision was stunning.

[CrippsCorner]

Can you explain more? Have never heard of a prism lens...

[britdaz]

My right eye is my worst eye, I suffered from ghosting quite a bit, I regularly complained at every eye exam at the hospital that I attend.
One such time I met the head honcho, cant remember her title but anyway she recommended a prism lens, this improved the ghosting and overall vision no end.

The lens has a prism built in, obviously this has to be orrientated correctly as such the lens is thicker at a bottom edge so it rotates in my eye to the correct position.

Other than saying it works for me I cant add anymore. Try Mr Google.

[CrippsCorner]

Okay, thanks... I'll ask about this. Where you say it has to rotate though just sounds like a more advanced version of the toric lenses I wear. Been getting more uncomfortable recently for some reason.

[britdaz]

Maybe a new prescription?

l'm an absolute pain at the hospital, in my mind with all the attention I receive I expect rightly or wrongly bloody good vision. I do get the impression that the optoms that treat me have a limited amount of knowledge, as I said when the department head saw me she said prism which up until then had never been mentioned.

Also they seem to want to fit the safeist flatest lens, they say this greatly helps but too flat can cause other issues.

Good luck with it all.
Regards
Darren