Help please.....

[kieran19685]

Hi all

After some help after my hospital appointment today

I've been wearing one RGP for the past three years and nothing on the left

Today I had an eye test and my overall vision is 20/20 however they say the left is virtually untreatable

Also we worried me but saying the right is soo good now but I should urgently seek to have cross linking done

He said in general your better eye is 5 years behind being as bad as your worst eye

Felt like he was pushing me into a decision although my left eye hasn't progressed in two years

Very confused

I'm 29 by the way

Thanks

[Anne Klepacz]

That's a tough decision, especially as you seem to be totally dependent on your good eye. If it's any help, the criteria that NICE set down for CXL on the NHS include that there needs to be evidence of progression in the last 6 mths. So if your eye really hasn't progressed at all in 2 yrs, it wouldn't qualify under the NHS. Have you had any topographies done recently? And do you know how thick the cornea is? If the 'good' cornea is continuing to thin and/or it's already near the measurement below which CXL couldn't be done, then that might be an argument for doing it. Otherwise, if the KC is stable, I'm not sure you need to rush into a decision. But of course, I'm not a medic!
Anne

[kieran19685]

Hi Anne

right is 435m but its the first time its been measured. My vision or shape hasnt changed in 2/3 years.

confused....

[Anne Klepacz]

Well, the thickness normally has to be over 400 (though it can be done below that using a special method the name of which escapes me in this heat!) so maybe not soooo urgent. But other people may think differently. I guess one option would be to get a second opinion. Though of course you might end up more confused!
Good luck
Anne

[James_Ldn]

I've read quite a few research papers where consultants are now recommending to their patients to have cross-linking done so long as keratoconus has been diagnosed and the patient is under 35yo, even if the KC isn't progressing at present. The thinking behind this is that cross-linking is considered to be safe and effective, so it's less risky to have the cross-linking done than to not have it done and potentially see the KC progress again.

Kieran, I believe for corneal thickness 'advanced KC' is classed as anything less than 446µm. So if yours is lower than that, your consultant may well be thinking that if action is not taken soon, you could reach a point where your vision in that good eye becomes difficult to correct. The downside of the cross-linking is that for the first 3 months afterwards your vision in that eye may well be more blurred than usual as the cornea recovers, which would obviously be difficult if you're reliant on that one eye.

[CrippsCorner]

I've recently had CXL performed on my worse eye, and shall be getting the better eye done at the end of September. Let me tell you now the one regret I have, which I now have to pay for for the rest of my life is wishing I had it done sooner. I don't really see what the point in waiting is, just to have your eyesight gradually deteriorate further. I tried hard to get funding for it but I was unsuccessful to had to pay for it myself, but I don't think you can really put a price on your vision. My advice to anyone would be get it done ASAP after finding out you have keratoconus, even if it does seem stable.

[kieran19685]

Thanks - i think perhaps your right.

Quick question - how long did you have to remove your contacts prior to the procedure? Also when did you return to work and was able to use contacts again?

Thanks

[CrippsCorner]

Thanks - i think perhaps your right.

Quick question - how long did you have to remove your contacts prior to the procedure? Also when did you return to work and was able to use contacts again?

Thanks

I use soft contacts... but I wasn't told to remove them beforehand at all, I've never heard of that I must admit. 1 month until I can wear them again, 3 months is recommended for RGP users. I was back to work after a week, however I think that'll be longer the next time round when I'll be relying on the worse eye to get me through. Oh, and if it helps, I decided to wait 2 weeks until I attempted driving again.

[kieran19685]

Thanks any tips where to have it done? How much was it ?

[CrippsCorner]

£1,515 @ BMI. You can see a list of their hospitals nationwide here...

http://www.bmihealthcare.co.uk/hospital/searchresult