Keratoconus frustration

[alice44]

I'm getting to the stage now where I just don't really know what to do about my eyesight and I wondered if anyone could give me any advice. I've tried soft lenses, hard lenses, sclerals, intacs, but my eyesight just isn't getting better and nothing has helped. I'm currently trying out Kerasift lenses, and allowed myself a bit of excitement at them potentially working, but when I got to the hospital today the fit wasn't right so they've sent off for some new ones. Everytime this happens I then have to wait for another appointment which takes a couple of months. Then, to complicate things, my surgeon has offered my CR3 and my cornea is only just thick enough to have it, so if I leave it too long it may not be an option. However, if I get it done I'll have to leave the lenses until my eyes have recovered from the CR3.

It's so hard trying to be optomistic. I was so looking forward to taking some lenses home to try today.

[timtim]

I can sympathize with you, Alice. The past 4 or 5 years have been a waiting game for me too, with no relief. Well, I only found out I officially had KC a year and a few months ago, but since then I've been trying different lenses, RGP's, talking to the surgeon about surgeries, etc. Everytime, I have had to go home with no solution, and it gets very frustrating. I haven't been through quite as much as you, but I still see where you're coming from. I am stuck in soft contacts right now, which is where I was at the beginning, so that's frustrating because they don't help much. I have an appointment to be fitted with Synergeyes KC lenses next week, however. I'm excited about that, but don't allow myself to get overly excited with the way things have gone. I urge you to stay strong, and know that one day, something will work out to help you.

[Andrew MacLean]

I kept putting off surgery until I had nothing left to lose.

In your place, would I accept CXL (new name for C3R)? Like a shot I would accept it, not because I thought it would rescue my sight or restore what I had lost, but because it might just give me more thinking time.

All the best

Andrew

[Lynn White]

Alice

I can understand your frustration, especially waiting times. If your surgeon has offered you CXL (C3R) and your corneas are only just thick enough for it, then its time to consider the offer. CXL at the very least will halt progression for now, and as Andrew says, buy you some more time. I know it means more time out of lenses but this may be more of a long term solution.

Do you have to get back to the surgeon with a decision?

[alice44]

Thanks for all of your advice.

I think I am going to book my CR3 for Easter time and try out the Kerasoft lenses in the mean time. I am so close to getting a pair to take away (appointment now in just 3 and a half weeks) that I think I would like to see the results. It would also give me the confidence to have the CR3 to halt my progression, if the lenses work for me, and then I can hopefully have something to look forward to afterwards.

I'm feeling a bit better anyway after last week's downer!