C3 R

[Anne Klepacz]

Welcome Louise!
As others have said, do let us know how things go - we're getting lots of enquiries about this treatment so it's really good to be able to share any information. And we all wish you well!
On the cost front, would you mind telling us what the cost is here in the UK? And as I said in my post to Debbie, do e-mail me if you'd like to join as a full member and be on our regular mailing list. All the best.
Anne

[Louise Berridge]

Hello All,

Thanks very much for all your support and encouragement.
I was very nervous about the treatment, but it was fine. I had extensive tests, maps and thickness measurements taken of both eyes before the treatment. I'll see if I can get a copy of the topography maps to post on here.

Luckily, at the moment the other eye is free from KC, although I know this could change at anytime. Anyway, to start with, the eye is numbed with drops and the top scraped with a blunt tool. This allows the Riboflavin, which is put in every few minutes for the next half an hour, to be better absorbed by the cornea. All I felt was a bit of pressure on the eye and it went quite blurry. A small UV light was then shined into the eye for a further half an hour and it was all done. I was given various drops and painkillers for the next week. The anaesthetic drops wore off on the train on the way home and it was like a hot poker in my eye until the middle of the night. After there was minor discomfort. I travelled back to London the following day for a check up and go again in a week.

Apart from the expense, £1250, which not every one can afford, I would encourage any KC sufferer to undergo the treatment. As long as KC is not extremley severe, previous research has shown all degredation has been halted and there is nothing to lose by having the treatment. It seems like most other countries are utilizing this technique, even India. It's good to here it's going to be used in Australia. According to the Consultant in London, much of the NHS know very little about the treatment and are unlikely to inform anyone about it, at the moment.

Good luck with INTACS Kirsten. Let us know how that goes.

Louise

[Louise Berridge]

Hello Anne,

Sorry, I didn't see your reply until I posted mine as they were both on the 2nd page!

Thanks for your response and offer of full memebership.

The cost at the London Refractive Eye Surgery
is £1250 per eye. This includes all follow up appointments and medicines related to the treatment for a year.

Apparently they are expecting this treatment to be a useful tool in treating the expected increase in KC from LASIK eye surgery!

Louise

[Kirsten]

Good luck with INTACS Kirsten. Let us know how that goes.

Louise

Thanks! I'll definitely be posting about my experience..

Glad to hear all went well with your C3R too. Be sure to keep us updated

Kirsten

[Anne Klepacz]

Many thanks Louise. I'm sure lots of us will be eagerly awaiting your updates! There are some hospitals in the UK which have applied for ethical approval to start conducting trials of C3R on the NHS. As far as I know, none have yet had the go ahead, but it is possible that it will start becoming available in one or two hospitals next year. I'm sure members will let us know if they hear any more!
All the best for your next check.
Anne

[debbieo]

Just a quick question, Is C3R just a way of preventing the further spread of KC or does it improve vision?

Also could you send me contact details for the place where you had it done, as this may be somewhere I would consider going.

[jayuk]

Debbieo

C3R, so far, is aimed at halting the progression of Keratoconus in mild\medium cases. Results are all very promising to date whereby those that had had the treatment have virtually all shown signs of KC halting. How long this lasts? We dont know...but its 7 odd years on and things are looking good for those that were included in the initial study of this treatment.

HTH

Jay

[GarethB]

Debbio,

As Jayuk says the aim of this treatment is to 'stabilise' the condition to make the management easier.

Some have reported vision improvements but so have people who have had the very uncomfotable hydrops where the back of the cornea surface ruptures and fills with fluid. The resulting scar tissue in some has given improved vision. Infact there was a time when hydrops was induced because of this. As the research went on the results were found to be variable.

The otherthing with the C3R studies that I have read have said the patients in the trial were carefully selected yet none state what the acceptance criteria were to have the treatment for those particular studies.

At this stage it is fare to say C3R is another management stategy for KC.

[ashley wilson]

hello everyone.
i had c3r on wednesday at st thomas hospital in london. it was done by david o'brart, who i would recommend to anyone, and the procedure was pretty much the same as described by Louise.
it cost £750 per eye and i will have my left eye treated as soon as the right heals.
i am now 48 hours on and have to say that the discomfort was not as bad as he had warned me, the biggest problem i find at the moment is my eye is very sensitive to light. he did say to expect this. i too will keep you posted.

[Andrew MacLean]

Ashley

Welcome tot he site. congratulations on your C3R procedure; it is good to see that this is becoming more common now in the UK. There was a time when people who wanted C3R had to travel overseas.

all the best. Keep us posted on your progress.

Andrew