Collagen cross linking questions

[Bryan]

Hi All,

Im new on here, first forum I've ever joined for people with KC. Well I'm 30 and I was diagnosed with KC a few years ago. Having wore specs all my life then, soft contacts from about 16 til 25, then hard lenses, RGB and other types over the last few years after being diagnosed KC.

After some extensive research on how I may possibly sort the KC out, I decided to visit an Ophthalmologist in Scotland last week. The consultation and topography went well, i was a bit knocked back to find out how bad my KC was. Basically we discussed what was best for me? With my Left eye having 450 microns the consultant suggested Collagen Cross Linking. On my right eye the worst one, it read 353 microns, this is too far gone for the Collagen Cross Linking? So it looks like a Corneal Transplant on the right eye.
So we are going to concentrate on stabalising the left eye first to stop it progressing. I am now booked in for the Cross Linking procedure next month.
It has been a shock to me finding out how bad my eyes are, and it has took some serious thought on the procedure. But im positive and i want to save my eye sight.

[Anne Klepacz]

Hi Bryan and welcome!
All the very best for your CXL next month and let us know how you get on.
Anne

[Bryan]

Hi Anne,

Yes I will try and post my progress and how im getting on, on here. im sure people who are nervous about it would like to know how its going.

Thanks.

[longhoc]

Hi Bryan, good luck with everything. I know what a shock it can be when you find out how things really are with your Keratoconus. I got topologies done every 6 months for over ten years but never really took any notice of the details because I could mostly (well, sometimes) cope okay with RGP lenses. My "low point" with corneal thickness ended up being 280~90 microns -- the consultants never came right out and said "OMG OMG ! that's really really thin !" (they tend to be far more measured in their language to patients I find). Then I started doing some investigations...

... and realised that, OMG OMG ! that's really really thin !



Cheers

Chris

[Bryan]

Hi Chris,

Its good to have people on the same boat as me at the moment, it helps a lot. Jeez 280-90 microns, what have you got planned for your KC? Have you had any treatments at all, or are you planning something to treat your KC?

Cheers
Bryan

[longhoc]

Unfort. no, once you get to that sort of figure, a graft is pretty much your only option if you've got associated high degrees of astigmatism and myopia as I did. Curiously though, it is possible that you can have a relay thin cornea which is actually not too bad a shape -- meaning your vision isn't complete useless and lens fitting is not too difficult. Such is the vagaries of Keratoconus...

Graft 14 months ago, all stiches out 2 months ago, waiting (very impatiently !) for the time when I can try lenses again.

As Anne said, do keep us updated if you can.

Best wishes

Chris

[Bryan]

So how did the graft go chris?

How is your sight after the graft?

Thats what i'll have to get in my right eye, just curious as to planning time off from work and other stuff??

Bry.

[longhoc]

Hi Bryan

Well, I'm getting easily the third line down with glasses -- compared with counting fingers pre-graft. And once I try out lenses -- or even consider further refractive surgery or other options -- that should be better still.

Probably the most important thing, but it was not what I was expecting to be, is the sense that "good, I've got that out the way". By which I mean, for many years prior to having the graft done, I was increasingly aware that it was going to be unavoidable, even though I kept avoiding making a decision. For understandable reasons of course, it is a big step and requires total commitment. Being able to think to myself it's all done and the worst is over makes me realise how much of a mental burden I was carrying around before.

Good luck, hope everything goes okay for you too.

Cheers

Chris