UK Keratoconus Self-Help and Support Association

Hi,
I have decided to become a member following a hospital appointment today.
I have KC in both eyes, it was diagnosed as a child and I was given glasses but never wore them! I have been wearing contact lenses now for about 5 years, I wear a soft one in my left eye and a rigid in my right eye. I do not know much about KC and don't know how 'bad' mine is?
I requested the appointment I went to today due to my rigid lens becoming too uncomfortable to wear. I was told that I have some small 'bubbles' on my cornea? and also a 'dent'? Has anyone else had this? I am going back to a few days to see if it has settled, any advice before then would be fantastic. I feel like I do not know enough about this, I have just been reading about CXL and intacs which I have never heard of before and wonder if I should be requesting these treatments??
Thanks, Hayley

I also had an appointment yesterday and no glasses no lenses straight to corneal transplant but no help:( counting fingers in right eye and 6/60 vision in left but no help in between:( I am stuck and scared no help:(

Hi Hayley and Ahmed

Welcome to the Forum.

To Hayley, appologies, I don't know about the "bubbles" and the "dent" ! I've heard of a few things related to Keratoconus, but not these terms ! I guess the person you saw in the clinic was using non-medical terminology (which is helpful as you can understand in a literal sense what they mean) but not much to go on if you're trying to do some research

Hopefully someone here will be able to say a bit more. As for specific treatment options, yes, it's a very good idea to find out about what is available. Not all options are offered in all clinics. Some, like soft lenses or hybrid lenses (a combination of both soft and hard lens in one) require special training on the part of the optometrist so not everywhere will suggest them. Intacs -- and things like Crosslinking too -- are surgical procedures so you'll need to consult with an opthalmologist (basically an eye surgeon) to find out if these are suitable for you. Really a very good idea to go in "armed" with all the things you're interested in getting an assessment for -- you can find out the limits of the scope of the person you're seeing and if they can't advise on all that you want to cover, you can ask to see someone who can. Be aware though that you might have to go back to your GP in Primary Care for a referral to a particular specialist -- let us know if you need any more information on this aspect of things.

For Ahmed, never nice to hear that someone has bascially got what seems like advanced Keratoconus and doesn't have much in the way of options. Certainly with the degree of low vision you've described, it's at the severe end of the scale. Where abouts are you ? Normally Keratoconus would be picked up long before it got to the sort of situation you're in so is there some more history to your case ?

Good luck to you both, great to have you with us. We've got some really excellent literature available that I think covers the whole range of Keratoconus treatment options so please let us know if you'd like this too.

Best wishes

Chris

Thank you so much Chris, very reassuring. I have been reading alot on this website and I will certainly ask about all the options (now that I know about them!) when I go back next week. Very pleased that I have found some support.
Best wishes Ahmed, I hope that your surgery goes well and that you get all of the support and advice that you need.
Hayley x

Thanks hayley:) Ahmed my sons name m fatima:D

Hayley

What this means is that you have bubbles trapped in the tears beneath your RGP lens and that these have caused indentations in your cornea. You are being asked to go back in case it is just a temporary situation but if you are reporting discomfort for a while, then its likely you will need an adjustment to the fit.

Cross-linking is now a well established treatment outside of the UK and is also available privately within the UK but not within the NHS. Only a very few NHS hospitals are offering it and it is still usually as part of a trial or study.

INTACs - very much depends on the individual eye as to whether it is successful or not and nearly always should be done in conjunction with cross linking.

However, both if these procedures are valid and useful for keratoconus. If you are interested, it may well be worth your while going to a private clinic for another opinion. At least you would know your options.

Fatima - we have chatted for a long time today and I hope you are now feeling a little better

Lynn

At my hospital the bubbles that cause dents is also called dimple staining because when the dye is put in your eye these areas show up as green dimples under the UV light.

Had it myself and it went with a chnage of lenses but never completly with RGP's (wore RGP's for 4 years) however since having soft lenses for the past 4 years they completly went in a relatively short space of time.

Hehe Gareth...

Yes, that is the technical name for it... or "dimple veil".

Lynn

Thanks for the additional info Lynn, this forum is great!!
I'm going back tomorrow and guessing a new lens will be fitted. I'm going to request a private referral from my GP to discuss other options... I have bupa cover through my partners work, does anyone know if that would cover the costs of any procedures like CXL, intacs, etc?
Thanks again, Hayley x

HI Hayely,

As far as I know, BUPA officially does not cover CXL and possibly not INTACs either. The reason for this is that NICE (the organisation that approves drugs and procedures for the NHS) is only very luke warm about cross linking and it is not widely available on the NHS. However, I have known the odd patient or two with other private insurance companies push for CXL to be allowed very hard and managed to get approval. The usual stance of insurance companies is that they will pay for a graft as they see that as a "cure" but not for CXL which they see as "experimental".

It would be interesting to hear if anyone HAS had it approved by BUPA and if so, we could all share information?

Lynn