UK Keratoconus Self-Help and Support Association

I came across this site a few years ago and I can safely say it completely changed my quality of life. I was in despair with my KC having attended the hospital for about 10 years, trying all sorts of lenses and had stopped being able to drive, study etc etc. After visiting the site I discovered scleral lenses which I have been wearing for about 5 years. My vision through them was great. The first day I put them in I saw detail I had forgotten possible and went back to leading a normal life - even scuba dived in the sclerals!

I would now say I have reached the next stage of suffering as my eyes have started to reject the lenses. I had quite a high % of touch to achieve the best vision and over time was only able to tolerate them for a few hours (before I wore them all the time). I was also beginning to find my lifestyle didn't always fit around these problems. I still find explaining to people that when I have my glasses on it means I'm having a day when I CAN'T see (and not the other way round) quite random!

So anyway I came back to the forum for some advice and decided to explore he intacs option. On Monday I had them inserted into my right eye - this being the worse of the two. The staff at East Grinstead were fantastic, as was my consultant. The operation itself was ok - now it's over! (quite prepared to give more details if anyone wants them!)

I'm now on day 4 after the operation. My vision in the intacs eye is definitely better than before (at the moment) but is quite misty - maybe this is as it's so soon after, I'm not sure. It seems healthy enough at present and just a little bloodshot. I have taken the whole week off work to recover.

The vision in my non intacs eye is ok, but although opticians are always suprised at how good my left eye is I still suffer really badly with multiple images etc. so what I see in the opticians really isn't any reflection on what I see in the real world.

I have an appointment at the opticians tomorrow - just to check out if I can survive with my current perscription for now. What I would say is that a present I do feel my eyes are more balanced and that it's not just my left eye doing all the work.

I hope this is helpful. Any feedback gratefully received. xx xx

I had a few questions for you. I experience pretty much the same circumstances as you as far as the righ tand left eye are concerned. I am wondering how much the intacs cost, assuming you got this done privately!

Thanks

The intacs cost £2400. It was a little bit more as I had them inserted by an intralasik thing which i suppossed to be more accurate.

Hi Alice,

Welcome to the site (and congrats for joining after watching for so long!) I feel the same about the site as without I don't think I'd know anywhere near as much about my condition as I do, or as in control of the situation as I am.

I also tried out sclerals but I wasn't so fortunate - they were better for getting me wet (and the floor, and my feet, and the optometrist!) than giving me better vision. If I did ever manage to get them in my eyes I'd either then end up looking through bubbles or only tolerating them for an hour or two before they clouded up.

I'm up for intacs at the beginning of November and I can't wait - I'm having them inserted into my right eye 'mechanically'.

Funny enough though, I used to live within walking distance of the East Grinstead clinic and was never offered intacs by Sussex eye hospital - within minutes of seeing my new specialist here in Leicester they were on the cards!

Good luck with your recovery and keep posting - I'll be (along with others here no doubt) to see how you get.

Just out of interest from a purely personal angle, how long after the surgery were you/will you be in a position to return to 'normal life?' - I had a double vision (squint) operation at the beginning of last year and was off work for about a week - mainly because of infection control and making sure I didnt bang the eye accidentally.

Thanks, and good luck!

Ed

Guidance from NICE say we can get Intacs on the NHS, so ask at the clinic you currently attend.

Karl_R is a good source of knowledge about intacs too.

Alice 44

Welcome to the forum!

I am a little shocked to learn that you had to pay very heavily for a treatment that is available free on the NHS. Is East Grinstead not an NHS hospital?

Anyhow, I hope that your sight recovers quickly after the INTACS surgery.

Yours aye

Andrew

There's available and there's available though and to be honest there comes a time when you just want something done.

It's good to know it's available on the NHS though and that it's becoming a more recognised treatment. Would obviously have preferred to have spent the money on an exotic holiday - but here's hoping next time I'l be able to see the sea!

I should probably add onthe whole private/NHS thing that I live on the other side of the country and had to travel to East Grinstead to get it done privately. My NHS hospital are great in terms of sympathy and trying their very best for me, but unfortunately both solutions so far for my KC have been done privately and through my own research.

Hi Alice, welcome and thanks for joining

So anyway I came back to the forum for some advice and decided to explore he intacs option. On Monday I had them inserted into my right eye - this being the worse of the two. The staff at East Grinstead were fantastic, as was my consultant. The operation itself was ok - now it's over! (quite prepared to give more details if anyone wants them!)

I'm now on day 4 after the operation. My vision in the intacs eye is definitely better than before (at the moment) but is quite misty - maybe this is as it's so soon after, I'm not sure. It seems healthy enough at present and just a little bloodshot. I have taken the whole week off work to recover.

Please post more details of you operation, the more information there is from people who have had it done the better it will be for those who are considering the operation or are about to have it done.

Like you I noticed a great improvement in vision in my right eye after the operation, or to be more precise the morning after. Similarly I also had a haze in my vision. Mine was caused by the infection I picked up immediately after the op as some of the "gunk" had got behind the bandage lens placed over the cornea. Yours may not be caused by this, however I would strongly suggest that you get it checked out.

Any pain, swelling and bloodshot will gradually ease over the coming week, though you may well find that the eye will feel gritty, this is the stitch - do not rub your eye!

Be prepared for days where your vision does not seem as good as it has been, this will be because of the cornea settling down into it's new shape.

As for the private/NHS debate, as you know INTACS has now become a recognized treatment thanks to the NICE guidance issued recently. This means that it will be easier for consultants to obtain the funding required from the trusts more readily as trusts were not prepared to fund unrecognised treatments. This also means that it should be easier to be referred to a centre which performs INTACS from one which doesn't, whether this will happen in practice remains to be seen. This does not mean that I disagree with private treatment as the are a lot of personal factor which must be taken into consideration, for some such as yourself it may be the better option.

It is now 8 months since I had my op, the difference it has made to my life is enormous; I have got a new job and returned to work, I have better aided vision than most "normal" people (6/5 N5). However although the vision has stabilized compared to earlier this year, it is still in a state of flux - I have noticed that the right eye has changed again and is becoming a little blurred, must chase up my next appointment as it is due sometime around now.

As I always say, what has worked for me and the results I have got may not necessarily be the case for another patient who has had the op.

Please keep us updated as you go along.

Karl

Thank you to everyone who's responded!

Karl - your personal account has helped a lot. I had my eyes tested this morning and the vision was not as good as he day after the operation and is still a little misty. My optician explained that as I have upset my cornea it will feel misty until it recovers and settles. It was good to hear from someone who experienced the same problem and I am pleased to hear you have experienced some promising results. Just a quick question - do you feel since the operation that the multiple images/ghosting thing as improved? I sometimes feel that this for me is the worse part and I could cope being a little blurry if images weren't so distorted and streaky.

alice x