UK Keratoconus Self-Help and Support Association

Details (from letter from my consultant)

Age 24 Male
Current spectacles Right - 3.75/-2.25 x 65 Left -4.25/-1.00 x 95.
Central corneal pachymetry measurement (micrometers): Right - 504, Left 522
Visual acuity Right- 6/12-1 Left 6/9.

I was recently diagnosed with KC at a laser eye consultation, after which I had consultation (through BUPA, after gp referral) with a consultant ophtalmologist and ophthalmic surgeon, who confirmed the diagnosis.

Both corneas were clear oon slit lamp examination with healthy intraocular pressures and normal fundi. Orbscan computerised videkeratography and corneal OCT scan confirmed the diagnosis of KC.

He has referred me to a contact lens specialistt saying RGP lenses should give me a much better vision. He recommended me for CXL as well. On mentioning that I may be able to get BUPA to pay if there is evidence of progression, also booked a follow up appointment in 3 months time to see if it is progressing by doing the tests again.

I just want to check a few things please:

1) Would RGP lenses be better, I can see fine with glasses now. Also are RGP lenses cheaper / available through the NHS? Or should I just pay up for the private fees as I don't think insurance covers this. (I have never worn contact lenses in my life, so really not sure about contact lenses).

2) For cross linking, from reading the forum I understand that sometimes BUPA can pay, however, the consultant needs to be able to say it is progressing. Is this true or is it worth trying to contact bupa without evidence of progression as the consultant has recommended it?

3) Reading the data at the top does anyone know if this is early stage? I know for cross linking the corneal measurment needs to be above 400, so I think I am fine in that respect. My consultant said it was early stage with slightly more advanced on the right. Also as it is early stage, would cross linking be best done as soon as possible? If i wait for the 3 month appointment and then potentially 3-5 month correspendence with BUPA - it may well be a year from now when I do cross linking. Is this okay or too risky. I can probably pay for it myself as I had saved up for laser eye surgery.

4) The last question is about potential for laser eye surgery/ICL/intacts post cross linking. Would I be able to have some sort of procedure to remove the need for glasses if CXL is succesful and eye sight gets stable. The consultant did mention that some clinics have recently started laser treatment for cross linked patients and I know Accuvision actually do some sort of laser treatment with cross linking if they think you are eligible. I am not too sure what the eligibilty criteria for that is though.

I'm not a professional, so ignore my comments with impunity. But IMHO basically if you can see ok so far I wouldn't be jumping into any procedures. Fundamentally procedures have risk and if you can see ok, you can see ok.

If in 3 months there are signs of progression and BUPA will pay then cross-linking would sound reasonable, but recognise that there is risk involved and instability of vision afterwards.

On the RGP lenses if you can so fine with glasses then I'm not sure why you should go for them. You do get specialist soft lenses too but even normal soft lenses can help with mild KC.

If it's like when I got diagnosed (more than ten years ago I think) I basically missed most of the detail then caught some bit at the end about "in the worst case cornea transplant" the reality is often much more benign than that. For example I have it bad in my right (too bad even for intacs, I think sub 400 microns) but only a bit in my left, I get away with glasses most of the time(use one eye...), but if I want can use a soft contact in my left and a rgp on top of a soft in my right.

In my layman view yours sounds (at this stage) to be like my left, that is detectable but not an issue. Having BUPA cover and getting it monitored is an excellent position to be in though because you can (I'd assume) go for cross-linking if required at no cost.

I'm not a professional either, but would agree with Andy. If you're happy with your glasses vision, then I'm not sure that the hassle of rgps is worth it at this stage (though to answer your question, yes they are available on the NHS at a cost of around £53 per lens). Nor do you need to rush in to a decision about crosslinking. Quite a few people with mild or even what's called 'subclinical' KC get diagnosed these days if they go for laser surgery. On the one hand, this is very good as laser treatment on an eye with even the mildest KC would make the KC worse. But it also means that people who weren't aware that they were anything other than shortsighted are suddenly told they have a potentially progressive eye condition with all the worries that brings.
IMHO monitoring your KC to see if there is any progression would give you a more informed basis on which to decide. I doubt if health insurance would be willing to pay unless your consultant can say it's necessary because of progression - people here have generally had huge battles with their health insurers!
As for your last question, there's no guarantee that any surgical intervention will remove the need for glasses. It might, but as Andy says, you need to balance that against the fact that no intervention is risk free and can bring problems of its own.
No easy answers, I'm afraid. Mild KC can often stay mild - if only we had crystal balls to tell us whether that will be true for us! But it sounds as though time is on your side. Good luck
Anne

Hi Taffer -- and just to confirm Anne's suspicion, no insurer would ever pay for "preventative" measures such as crosslinking without clear evidence that you Keratoconus was actively progressing. At least now you can be monitored so the rate of progression, if any, can be determined.

Best wishes

Chris

Thanks everyone for the comments. I will wait for the next consultant appointment to see if KC is progressing before I decide on CXL and contact BUPA.

Re: RGP lenses, is it worth getting a contact lens consultation anyway and maybe go for soft lenses if judged appropriate by the contact lens specialist.

The consultant letter says my visual acuity is Right eye- 6/12-1 Left eye 6/9 - not sure what that means, I had an eye exam 3 months ago and got a new prescription etc and think can see fine right now with glasses. Reading about some peoples' difficult experience with RGP lenses, I think I should go for soft lenses if they can work for now.

Are those acuities with or without specs? If they refer to your spectacle vision, there is a little room for improvement.

Taffer,

Your visual acuity is determined by reading the Snellen Chart. There is an explanation on this website:

http://www.keratoconus-group.org.uk/snellens/index.html

As your VA with glasses is slightly less than 6/6 it would be worth going for a contact lens consultation to see what improvement can be made. Talk to the optometrist about your vision needs and see what they suggest.

Lia

Hi Taffer

My view as an optometrist is to go for soft lenses first - disposable if you can - before jumping into rigid lenses. They cause less issues (such as your vision in glasses being blurred for several hours after removal) and are more easily managed by yourself than specialist lenses.

If you need RGPs, then so be it, but do try more normal options first.

Lynn