UK Keratoconus Self-Help and Support Association

Hello everyone,

I turned 35 last November (on the 30th to be exact). The following day I began feeling deterioration in my left eye's condition, mainly a night glare. I've had keratoconus for 20 years then and I had been managing quite OK since my "good" (right) eye can see 20/20 with spectacles. Now, when I felt this deteriation in my left eye I went to one doctor and he did a corneal scan (which was the first I ever did) and showed me that I had Keratoconus in both eyes. The right one was "mild" though. To cut a long story short, the glare in my left eye seems to have gotten a little worse since the beginning of December. But the alarming news is that my other good eye is also getting worse, which is something I can tell since the night glare there is lengthening a bit.

To be more specific, the K reading on my right eye was 44.2 on 15th of January. On the 14th of Feb (which was the day before Yesterday), I had another scan and it showed 44.9. Now the Doctor sounded the alarm bells a little. He told me to monitor the glare closely and to report again for a scan on the 28th. He said he would definitely recommend cross linking if the situation in my right eye kept degenerating.

Now I'm not sure what to do. I can still see 20/20 with my good eye with glasses (I just did a self test this morning). Even unassisted I can still see 20/25. I know the condition (or disease) of keratoconus is not predictable, but I'm 35. And honestly I worry about the complications of the surgery. After all this is my only good eye. The left eye is 20/200 without glasses (legally blind, I guess?), and 6/9 with a soft lens (for myopia) and glasses (for astigmatism). When I was first diagnosed with KC they tried to get me to wear hard contact lens but I could not wear them....

I've read a lot of other members' experiences with cross linking. It seems to me it goes well for most... But I'm still worried about driving and other activities. I can take a week off work but not sure whether I'll be able to jump back right in after it passes. I guess it's got to be at a point where I'll have no choice.

What I would like to know is where to draw the line. Where should it be 100% certain that I should get the surgery? I know many will tell you to rely on your Doctor's opinion, and I know I trust my Doctor (who's also a surgeon). He has a great reputation and he's not charged me for two regular scans so far, only the initial diagnosis and examination.

Thank you so much in advance.

I'm yet to have Cross-linking myself, I'm due to get it done at the Queen Victoria on the 14th of March so I can't really advise on how it goes, however my understanding is that it will halt the progression of Keratoconus, if your eyes are actively getting worse I would consider it sooner rather than later to ensure your eyes dont get any worse.

Hello Gaz2k21, and good luck to you mate.

Hi mate, welcome. I had CXL performed on both my eyes last year, my bad eye was done in the summer, and my good eye in the winter. On my bad eye it went really well, I was back driving within 2 weeks and although it took a long time to get my new prescription through the NHS, the vision was better than I had for years… it reduced my astigmatism significantly, which is by no way a guarantee of CXL, so I was lucky there. Actually, that prescription is just starting go out as I've noticed myself squinting for perfect vision again, but that's okay as I was told it could fluctuate over the first 12 months or so. Because that went so well, I decided to go ahead with my good eye as I never wanted it to get as bad as my other eye.

Unfortunately, there were complications and I've gone from basically very good vision, to not even be able to make out peoples facial features. I have severe cornea hazing which should, hopefully clear… albeit not for at least 12 months.

I'm 3 months in at the moment and still can't drive etc. it's really impacted my life massively; I was signed off work for a long time too. At this point I really do regret getting it done, and it's changed my overall opinion on the procedure…

My consultant, although recommending it beforehand said I was on the borderline, his exact words were, "If you were 25 I'd say absolutely go for it, if you were 35 I'd say absolutely don't go for it, but you're 30…" if you do some Google research you'll find the older you are the more likely there is to be complications, although it also says hazing usually only occurs with severe keratoconus, which mine definitely wasn't. Honestly, my recommendation would be to only go for it if progression speeds up a lot or you get to the point where you couldn't stand it getting any worse at all. Pre-CXL I was struggling to drive at night, post-CXL it's simply impossible.

Either way it's a horrible decision to make but I'll try to answer any more questions you have.

Olly

Hi Olly, thank you for your thoughtful reply. I'm sorry for what you are going through. Hopefully it will clear up soon and the worst is over.

Although it's very hard, I'm trying to look at this logically. On the on hand, it feels awful to lose vision while you sit idle but knowing you could something about it. On the other hand, you can't help but think, well, what if this progression is episodic and it will stop on its own soon? Is it worth going through the risks just to prevent what is likely going to be a limited progression at this age? I have to admit, it’s quite exhausting continuously thinking about it.

Anyway, I think I’ll wait till the 28th for the time being. Let’s see whether the progression slowed or what.

Thanks again mate, take care.

Adam

Forgot to ask you Olly, was your KC progressing prior to the CXL? Was your consultant implying that he'd not recommend it even if it's still progressing at 35?

It was progressing, but very slowly. He said for my situation, i.e. very slow progression, it probably wouldn't be worth doing at 35... just to keep an eye on and see if it increases at all.

I'm booked in for my first eye (left - bad) on March 19 at the Queen Vic. Then all going well it's back on the list for the good eye. I've noticed more glare and now more difficulty seeing in brighter conditions and on a computer screen, I'm hoping it's just I know what to look for rather than a rapid decline in my good eye....

Anyway, I'm 27, so consultant did not hesitate to recommend CXL. I have it much worse than I thought in my bad eye but currently get by unaided. I hope that after CXL I'll be able to stop worrying then get fitted for lenses to bring my vision up to scratch... that's the plan anyway.

Good luck buddy, hope you get a better result than me!

Best of luck Matt.

Olly, I have couple of more questions but I'll go through your posts first as you might've answered them already