Side effects of crosslinking

[Kirsty Fullarton]

Hi,

My 15 year old daughter is considering having collagen crosslinking treatment but she is worried about possible side effects. She particularly wants to know how long the eyes take to heal afterwards and if the procedure causes scarring.

I'd be grateful for advice from anyone who has had the treatment.

Kirsty

[Andrew MacLean]

Kirsty

It is good that you have come here to ask questions before your daughter has treatment, but even after all the answers have been gathered, and you have conducted other research on the www, the decision about whether to go ahead still remains to be made.

I am sure that we all wish you well as you prusue your questions, and your daughter well, whatever she decides.

All the best

Andrew

[GarethB]

Kirsty,

From our confrence in the summer, the surface of the cornea appears to be perferated and no scarring was reported, not like the scar you would get with a graft and then you can't see it.

The surface of the eye does not take long to heal, but I have heard reports of vision steadily improving over an 18 month period, others reporting no vision change but stability of the KC which from my discussions with the people in Dresden that pioneered much of this work say it was aimed for.

Only one eye at a time is done, the idea is that you still have one eye (although with correction in most cases) to use while the treated eye heals. Consultants appear to be treating C3R patients in the same was as those with grfats in that treatment of the second eye is held back until they are satisfied with the treatment of the first.

Hope that makes sense.

I feel there is a greater audience waiting for 'every day patients' to be treated and hear their stories rather than read research journals where the selection criteria has been very strict and these criteria often get ommitted in the final paper.

[kaz]

Hello Kirsty,

I rarely post on the forum as I don't have a vast amount of knowledge about KC . But I have done quite alot of research on C3R as I had the treatment myself on my right eye just over two weeks ago.

To answer your question regarding the side effects I will copy below what was stated in the aftercare leaflet given to me after I had the treatment:

It is normal/some patients have:

Bloodshot eye (upto 10 days)

Scratchy feeling, like grit in the eye (upto 10 days)

Pain-transient upto 2 days, usually controlled by pain killers, eye drops and bandage contact lens for upto 3 days.

Double vision-usually for distance/high myopia

Sensitivity to light (upto 10 days)

Fluctuation of vision possibly causing headaches. (normally settles by 2 months but may last upto 6 months)

Watering eye (upto 10 days)

Foggy vision, haloes around lights.

From my experience the main issue is the hazy vision which can last a number of weeks. I planned to have the other eye done a week later but decided against this as I am at uni and needed atleast one eye working to complete my work! So I would strongly recommend waiting untill the first eye has recovered before proceeding with the second. In terms of the treatment causing scarring, I have not heard of this before but I am sure other group members will clarify this for you. The epithellum which is the area that is disturbed usually heals within a week.

Finally I thought I should add that although the treatment is invasive it is very important to consider everything before making a decision. The treatment has shown positive results but it has only been around for 10 years and is very much still in its infancy. I had nothing to lose as my KC is advanced so I am hoping it will stop the progression so that I can avoid a graft. You can either wait around to see how things progress or decide to go for it. Either way I hope things work out for your daughter.

Kaz

[Sweet]

Kirsty,

I haven't had cross linking but want to wish you all the best. Your daughter seems very mature for her age, it is good that she is asking about side effects.

Good luck and let us know how it goes!

[timmytim7]

hello,

i think i read that they don't treat under 18s with c3r? but i might be wrong? where are you planning on going to?

kaz: where did you get your eye done?

so far i'm going to either a private clinic in london or going on a clinical trial at moorfrields or guys and st thomas. i'm just trying to arrange it all and it's getting v complicated!

anyway i personally think that it make sense to treat KC early with c3r to stop the progression.

best of luck,



tim

[kaz]

Hello Tim,

I know one or two private clinics that do undertake the C3R procedure on under 18s so this might be each individual clinics own decision rather then a general rule.

I had my eye treated at the London Centre for Refractive Surgery. If you can get the treatment on the trial it will save you money and might also move things forward quicker for the treatment being available on the NHS if people like yourself are willing to be treated. I would be interested to know what the criteria is for the trials? Do you simply have to have progressing KC, or are they only treating selective mild cases similar to previous trials in other countries.

If you do go private there are a number of places offering the treatment now so take yout time, shop around and choose the one that your most comfortable with.

Hope all goes well with your treatment,

Kaz

[helen jones]

Hi, I have had C3R treatment on my eyes. The procedure lasts one hour and you really dnt feel much pain at all. Its the afterwards bit that you do. Basically the eye is covered with a patch that you can remove if you like. I removed it as I found that my eye just kept watering, this is perfectly normal and is a good sign that the eye is healing. All i can suggest is that you rest for at least two weeks and that if you dnt live near to the eye clinic definately stay overnight at hotel as all you'll want to do is sleep. Its been 3months now since i had mine done now and the eye is still healing but perfectly fine now to get on with everyday, I think the first two months after i definately found it difficult with hazy vision. There is no scaring that you can see, each case is different as its all about how well your eyes heal. I am now waiting to find out if I can have my next procedure intacs. Hope this helps!

[timmytim7]

hello,

i'm going to london centre for refractive surgery soon for a consultation. it's a choice between a private clinic or an nhs clinical trial. i think the trials are too slow, i want it done asap. anyway i'm trying to find out.

can those who have had c3r report back on how soon they could wear lenses again? could they wear soft lenses?


tim