UK Keratoconus Self-Help and Support Association

Hi
Just jouned and was diagnosed with Kerataconus in Nov 2005. I wear RGP lenses and feel o wit htem after a year. I had been researchuing some treatments and was maybe thinking of getting Intacs in the distant future for a mor elong term solution.
I'm still having issues with my lenses occasionally coming out when i sneeze and when its windy and i get something in my eye. ANyone have any experience with the Intacs process.
Also i wanted to know if at me being 25 yrs old i can expectmaybe a deterioration in any of my eyes. My right eye is worse than my left eye and after having two checkups with the optician after having lenses put in he said there has been no change.

Johnny

Welcome to the forums. Intacs may well be an option for you in the future, but your practitioner will advise you if they would be suitable for you. I wore RGPs for three years, and yes, I understand what you mean when you sneeze! Its really annoying, but I found it quite funny when I was with my friends (only if we found them!) . It really is hard to say about detirioration. To be quite honest, I think its usually a case of 'you have to wait and see'. When were you diagnosed with KC?

Johnni

Welcome to the forum!

My lenses used to pop out all the time. On one occasion I was in the company of some very distinguished people, I shook hands with them and then out came my right lens. Immediately everybody (including a member of the United Kingdom Royal Family) sank to their hands and knees and started feeling around for a lens.

The Moderator of the General Assembly and His Royal Highness both found my lens at the same time. They pointed and I lifted it on the tip of my finger. Contact lenses are great levellers.

Andrew

I was diagnosed with KC in Nov 2005. When i sneeze they never fall out just get dispaced on my eye fortunatly.
My optician said that cos im 25 i would have seen a difference by now if i were to he said cos usually its in the teens they can deteriorate.

Hi Johnni and welcome to the forum

Like you I was diagnosed KC in Nov 2005, uncanny coincidence

In relation to INTACS, I had these implanted in my right eye in February this year, and have seen (literally) great improvement in my vision.

However I do have a few questions and some advice for you......

Have you been referred to your nearest eye centre and seen a consultant in order to get a full diagnosis to the extent of your KC?
Have you seen an optometrist who is experienced in fitting lenses to KC patients?

Moving on to INTACS themselves....

The foremost point to bear in mind is that they are not a miracle cure as they can only extend the period before a corneal graft becomes a real possibility and/or inevitable. The results one patient may experience does not necessarily indicate the results another patient may experience.

INTACS are only suitable for a relatively small number of KC patients, the factors which can determine a patient's suitability include, but are not limited to:

Severity of KC
Corneal thickness
History of lens intolerance
Corneal health

Suitability can only be decided by a trained health care professional, it is not a treatment that you can go and buy off the shelf so to speak.

The long term success results of INTACS, in the UK at least, are fairly unknown as previously this procedure was not recognised by NICE guidance and the small number of centres actually performing the operation. IIRC there is little worldwide data as to the success or failure of the procedure beyond 20 years, that is not to say there is any current reason to believe there will be any long term complications with the procedure.

There are other treatments available including C3R. This in my opinion requires more study into the long term prognosis in patients, but from the data I've read should not be entirely ruled out (cue massive debate )

You can read about my experience of the INTACS procedure here:

"Intacs Operation Diary - Update"

As to the progression of your KC, it may well progress to a lesser extent. By the time I had my operation my KC had progressed further to what it was at the time of diagnosis, but only to a very small extent. I was told that it is likely that I had suffered from KC since I was about 13 (some 22 years ago) but because it had been very mild at the time it was masked by the astigmatism.

Please do find an optometrist who is experienced in fitting KS patients and also get a referral to a consultant.

Remember.....You rule your KC life, do not let KC rule your life.

I wish you all the best and please keep us informed as to how you progress.

Karl