11 years and still KC in only one eye?

[keratocop]

Gareth and rosemary,
If your vision is so bad, why dont you get the c3r,cxl surgery to stop the progression and get either PRK or intacs to correct your vision? Im looking into that so i can stop my KC eye from getting worse.

[GarethB]

I've had grafts in both eyes and no surgeon will try CXL on my eyes as no one knows what CXL will do to the healthy graft. The fear is that trauma may well cause rejection.

Plus while I can manage the condition so well with contact lenses and it is stable there is no reason to interfer.

If things should deteriorate and I have nothing to loose vision wise in the eye concenred, then i will probably consider surgical intervention but only as a last resort.

I'm all for CXL, if my daughter shows signs of KC, based on current information my wife and I have agreed that my daughter will have CXL.

[keratocop]

Hey Gareth,
I understand what your saying. If you have 20/15 in your eyes, why change it. Im 31 and still have the possibility of the disease progressing further though i feel like ive been lucky and have only had it in 1 eye for over 11 years. I would say you are older from your KC experience so it might not be worth it.
On another note, I find it wierd that your KC advanced 16 years after graft. Ive read that it usually stabilizes after 10-20 years....was that not the case for you?
Jeremy

[GarethB]

My right eye was grafted in about 1989 and the left in 1990 when I was in my late teens. Since being part of the group I've been fortunate enough to speak to many consultants and if you combine their collective experience you come to a toal in the hundreds and the number of cases like mine still barely make it to double figures. It is that rare it isn't worth mentioning to people who have a graft as they are more likely to suffer rejection which with todays techniques is getting less common.

20 years ago topography wasn't available so you relyed on the expereince of the consultant to remove as much of the affected cornea as possible. That is a lot easier with topography as you can get corneal thickness measurements too and the faft that DALK grafts mean you can go closer to the edge of the cornea with little risk of rejection afterwards just shows haw far things have moved on since I was first diagnosed.

Now I content my self with working with contact lens manufacturers where possible to help develop better lenses for us, the K3 just happened to be a lens I managed to get in on at ground level. 18 months ago we even tried a more advanced lens which we hope to revist again in the near future.

[keratocop]

I would love to try different lens options (only if the c3r doesnt work for me). as the soft toric gives me 20/20 however, Im sick of the ghosting and double vision. I m going to have to look to see if the kerasoft is available in canada. I know it was probably frustrating years ago when technology wasnt as advanced as it is today to be able to cope with KC, but i hope in the very near future there is a definate cure AND reversal in sight so future generations dont have to go through what we are today.

[Andrew MacLean]

keratocop

Whether the CXL works or not, you may still need lenses.

All the best

Andrew

[keratocop]

hey andrew,
I know that the cxl doesnt reverse KC...but i was hoping for either intacs or prk after so i dont have to wear contacts. There doing clinical trials of prk surgery and so far the cases have been successful.

[rosemary johnson]

Gareth and rosemary,
If your vision is so bad, why dont you get the c3r,cxl surgery to stop the progression and get either PRK or intacs to correct your vision? Im looking into that so i can stop my KC eye from getting worse.

too late for me!
By the time CXL was invented, my corneas had long been too thin for CXL (I'm 47 and was diagnosed about 13/14).
If it had been around in the mid-70s, who knows? - I ma have gone for it.
OTOH, I had a hydrops in each each at age 18 and 20, which stabilised it for a while then it started moving again, so for all I know, the same may have happened with the CXL.
Actualy, for all I know, it may have got too thin for CXL before it could have been arranged - I gather it was coming up very fast.
By similar token, my KC is by now far too advanced for intacs.
BTW, intacs do not (unless you're very lucky) correct your visual acuity. THey stretch the cornea into a more regular shape so it is easier to fit lenses (or possibly glasses) to correct it.
In my case - I'm also "ordinary" short sighted as well as having KC (was wearing specs for "ordinary" shortsightedness for years before the KC started to develop) so chance of lasering off enough to correct the VA off a KC-thinned cornea, even post-CXL, had it existed in my teenage years, wouldn't be something I'd like to try.
Rosemary

[keratocop]

hey rosemary,
ive probably already asked you this but what is your best corrected vision. I guess if you r KC isnt advancing now at your age then cxl is not needed. Have you had any consultations done to see if you can have cxl performed, or if your cornea is too thin for surgery?

[keratocop]

I also meant to add that i dont think cxl thins the cornea...just stops the KC from progressing.