Crosslinking Consultation - too late?

[harker]

Hello all,

I've had KC for a while now, but only over the last year or so has it begun to, well, frighten me. Back when I was a teenager the future seemed a little too abstract to worry about the condition progressing, and it's taken having a job and my post-university independence to appreciate what's at stake.

As a result, I've booked a consultation with Accuvision for this weekend, but now I'm terrified that my cornea will be too thin for C3R. I've possibly been a little lackadaisical about my condition because, even ten years after diagnoses, I still have pretty workable vision with specs. I always took that to mean that my condition wasn't that progressed, but, as I understand it, it could be more to do with the specific position of my cone rather than how progressed it is.

So, basically, I'm looking for what I know will be utterly anecdotal and therefore pretty much useless reassurance. Or, failing that, I'd like to be prepared for bad news. As someone who can still see moderately well in glasses, and who's never had any trouble with the fit or vision of my RGPs, should I be hopeful? How extreme would the progression have to be to pass that 400 microns cut off point?

[longhoc]

Hi there harker

In addition to corneal thickness, age (typically 40+) and the "K-max" reading (which is basically the degree of steepness of any corneal distortion) are contraindications (reasons to consider not having a particular treatment) for crosslinking. So it's important for the person in the clinic and your good self to go through everything. Even if some -- or all -- of the above negative factors are present, it may well be that the risk posed of continued progression considerably outweights the reasons why you'd not by rights be automatically considered for crosslinking.

That's the thing with Keratoconus. There's no hard-and-fast rules. It's all very much an evaluation by the clinicians and the patient of the proposition sitting there (that's you!). While you can look up some generic principles, there's often limited read-across for any particular individual.

For example, at Moorfields (the large eye specialist unit in London) the current clinical thinking is to automatically perform crosslinking on any graft candidate regardless of any of the contraindications. So as you can tell, the rule book goes out the window in some situaitons. And anyway, it's not so much a rule book as a best-guess book because there's still some big gaps in the knowledge of even the most experienced professionals in the field. This is because information is still emerging from ongoing crosslinking trials. There's a fascinating post a few below this one where someone's linked to a PDF of notes from a conference on crosslinking held for opthalmologists. Fascinating, because there's still so much being learnt.

So, best to do exactly what you're doing -- see the most skilled practicioners in the business and talk through everything with them.

Do let us all know how you get on if you don't mind. It's only be getting to hear what others get told that the rest of us can piece together what's happening in current treatment practice.

Oh, almost forgot the most important thing I was going to say, do please try and go easy on yourself for not "doing more, sooner" if I may paraphrase what you wrote. It's only human nature to adopt a hands-off wait-and-see approach when things are going well with any situation. That isn't actually a bad thing I don't think in any way and that includes living with Keratoconus. The main reason being is that even the most skilled and experienced professionals simply can't tell from one patient to the next exactly how the disease process will run. There's simply too many variables and even "unknown unknowns" right now with the current maturity of crosslinking practice. Again, you're doing just what you should be doing -- following a treatment/management strategy but keeping it under review for when your Keratoconus starts to warrant a new approach. Then taking appropriate action when needed.

Best wishes

Chris

[Lynn White]

HI harker...

400 microns is the official cut off point for CXL ....BUT that is with a normal procedure. The reason for the cut off is that if the cornea is thinner than this, it is possible the UV light can damage the back of the eye. However, for thinner corneas, CXL can still be done by using distilled water to swell the cornea and you can go quite thin and still have this procedure done.

So, with all the caveats that you have already anticipated, as someone who can see reasonably in glasses and can manage RGPs very well, then I would say the odds are very good you can have it done successfully.

Lynn

[harker]

Thanks to both of you. It'll still be a pretty stressful week, I fear. Especially as the stipulation for leaving out my RGPs means my current obsession is tracking the minor visual changes day-on-day as my cornea returns to 'normal'. My spectacle prescription is basically designed for post-(next day) lens wear, so leaving them out worsens that vision that as well.

[harker]

Update:

I had a consultation at Accuvision on Saturday. It was a bit odd, walking into their clinic and seeing an advert for a "full treatment solution" in their lobby: makes me wish I'd wandered past years ago.

Anyway, my corneas are still reasonably thick. About 470 in the thinnest point in each. The doctor I spoke to gave a very strong recommendation that I have C3R in both eyes - arguing that my acuity with glasses (20/20 in my right eye, 20/30 in the left) was something I was very lucky to have and worth preserving.

So I'm booked in for the left eye on August 5th. It's funny, after waiting ten years, a few extra weeks shouldn't hurt. Especially as I've never suffered from progression fast enough to notice week-on-week. But having committed myself to surgery, I just want it over with. I was tempted to look elsewhere, especially as Accuvision are expensive. But the aftercare makes for a tempting deal.

I'm a bit scared that having this done might cost me some acuity with glasses, however. Intellectually, I know it's the right call - I could lose a line off the chart over the next year anyway, and then I'd still have the effects of the surgery to consider, but nonetheless, I'm slightly nervous.

[liam82]

Good luck mate.

I had crosslinking done 5 weeks ago today. Its nothing to worry about, and should the recovery isnt particuarly arkward or stressful.

Hope it all goes well for you.