Collagen Cross linking

[Libby]

Just wondered how many people had tried the above procedure, and whether it had seemed successful slowing down progression of KC.
My 17 year old daughter has just been diagnosed last week with KC in the right eye, she is going to be fitted with a contact lens in the right eye, she will then have another topography in 6 months time and dependent on what that uncovers the consultant had mentioned C3R,
I myself was diagnosed at around 18, I am now 44 so had KC for approx 26 years, thank goodness for new technology thats what I say
Be interested in your experiences and opinions.
Libby

[helen jones]

I had crosslinking done back in September. The procedure itself is not particularly painful - just takes a long time! Afterwards I had a foggy effect for several weeks when my vision actually seemed worse than before . This was due to the cornea being swollen and taking a while to heal - they take the top layer off to do the procedure. After 2 months my vision was dramatically improved in my bad eye. Before treatment I had 6/36 vision in one eye and 6/24 in the other which meant I could no longer drive. Now my vision is 6/12 in both and has stayed that way for over a month now. The consultant who did my C3R now does it at the same time as inserting Intacs. I am having Intacs done next week then hopefully I will be able to use ordinary specs to correct my vision. It's a slow slog back to recovery but long term it was the right choice for me

[Libby]

Thanks Helen,
Im pleased that things are going well for you. I think its important to try to find out the pro's and cons which of course I will do before entering into any procedure.
I remember when I was first diagnosed and the deterioration as I can recall was very very rapid.
If there's a chance that my daughters eye can be halted before the condition as time to accelerate then obviously that will be the course we would like to take.
It helps speaking to people who have had the procedure and getting your feedback.
Thanks again, I wish you well with your intacs.
Libby

[Gabriela Neal Gonzalez]

Hi Helen, My names Gabriela and i was diagnosed with KC almost a year ago. late last year in December i was referred dowm to St thomas and Guys hospital in London to see the leading eye doctor/surgeon. They said that I had been referred down there to be part of this C3R collagen crosslinking procedure which i had no idea about, however they then said that i was not old enough to have this procedure done as you have to be 18 to take part in the trial. The head surgeon/doctor said that he does do it privately, I was just wondering if you think it is a beneficial procedure to have done and where you had it done? Gabrielaxxxx

[BusyLizzy]

Hi,

I've been reading about a study of corneal crosslinking today and noticed your posts on the same subject.

The article I read mentions that crosslinking can be performed to prevent the progression of keratoconus. This seems to suggest that the procedure must be done in the early stages of the condition. It does not state whether it is not suitable for those whose disease has developed fully.

I am 32 and had keratoconus diagnosed when I was 25, although a previous optician had missed the diagnosis when I was in my teens (I was provided with very odd looking lens prescriptions in my glasses where one lens was a good deal thicker and different from the other).

If you can shed any light on this for me, it would be very helpful before I mention it at the contact lens clinic.

[Andrew MacLean]

Hello

I am told that we have to get used to calling "C3R" by its new name "CXL". The procedure is sometimes offered in the early stages of KC, and some success has been claimed for it. It may be that some of the success is doe to the non-progression in cases where the KC would not have progressed, even if nothing had been done.

You need to be careful about any procedure to the eye. If you do decide to go ahead, then you will have weighed the pros and cons and come to an informed choice. CXL is becoming more widely available, but is still considered experimental in many jurisdictions.

All the best

Andrew

[timmytim7]

hi,

i don't think it's very risky from everything i''ve read about it so far. i'd say it's worth taking the chance on it to halt the progression.

no one who had c3r so far has needed a corneal graft later in life. i've also not read of anyone getting worse. true there are some risks in all eye surgery though.

anyway, i think we can all be very positive about the results for this treatment so far. it will be very interesting to read the studies when patients have been followed up for more years but i think if the progression has stopped for 2 or 3 years then it would be unlikely to start again? (esp. as the patient will have aged by then as well).

so all in all if i had a child with KC i wouldn't hesitate for a second to let them have c3r treatment.


best wishes,


tim

[Andrew MacLean]

tim

You say that nobody who has had CXL has ever needed a corneal graft, but I am afraid that this is not true. At least one member of the forum had CXL early (I think he had to go to Dresden), and he needed a subsequent graft. There was some subsequent discussion about the method employed in his CXL procedure, but the fact remains that he had a graft after having cross-linking.

Also, CXL is still not a permitted technique in many jurisdictions. I am not sure that it has cleared ethics in the NHS, although I know that it is being trialed in some places. It would be interesting to be able to attend the AGM to be brought up to date with the experience at Moorfields.

If I were in the position to decide whether to have CXL, I think I most probably would have it, but not on the basis that it was risk-free or a 'cure' for Keratoconus. I'd have it on the basis that it was a positive therapeutic technique that might slow the development of my condition.

Andrew

[timmytim7]

hi again,

ok fair enough andrew.

i've just been told more positive things about it than this! maybe i read the wrong reports or spoke to people who are enthusiasts for cxl though!

maybe the person who later needed a graft didn't have the front cells in the eye removed for the treatment? i heard this doesn't work so well (although less painful!)

why would the treatment be un-ethical? any ideas?

also, does any data suggest that some peoples' KC does degenerate after cxl treatment?


best wishes,


tim

[Andrew MacLean]

I am not sure that I think that CXL would be un-ethical, except if it were offered for non-therapeutic purposes or performed without the presence of clinical indicators, or if it were performed without informed consent. A theoretical example would be if CXL were offered for the motive of profit for the clinic rather than therapeutic advantage for the patient.

The progression of a new treatment through ethics committees is designed specifically to ensure that each of these conditions can be met.

To be at the stage of hospital trials the procedure has already progressed pretty far along the way towards acceptance, but as I say, I am not sure that I have yet read that it has cleared the process. I know that it is not yet so far advanced in the United States, it has not been approved in at least one of the Benelux countries.

We do become enthusiastic about new therapies, because we tend to invest in them a great deal of hope. We ask, "If this is potentially beneficial why isn't it universally available now?" In support of this question we latch onto positive reports in the press and we become frustrated and impatient. We blame the people who are doing their job for preventing us from getting the therapy that will make all things right. Then, when the new therapy is freely available on the NHS we find out that, while it may have utility for some, it is not the panacea for which we had waited.

Andrew