C3R - Corneal Collagen Crosslinking!

[zielony]

Hello.

I'm very interested in C3R, too.
I've found some news about cross-linking, you might be interested.

Here are the links:

http://www.keratoconus.asn.au/CC_study.htm
http://www.kcglobal.org/
http://www.ophthalmologytimes.com/ophth ... ?id=201535
http://www.ophthalmologytimes.com/ophth ... ?id=120465
http://www.ophthalmologytimes.com/ophth ... ?id=309216
http://www.ophthalmologytimes.com/ophth ... p?id=86342

Marcin

[Heath]

hi

I am thinkin of getting C3R done ..
Jayuk .. can u please tell me the reason y u only bought time with the procedure and it got worse after that .. does it have nething to do with the procedure with epithelium in place.

I read somebody quoting Prof. Kolhass from germany on another forum ..

Quote----

The epithelial cell layer of our cornea is a natural barrier for different exogenous toxic effects, like UVA-light. (Lambert Bare rule)



UVA is absorbed in the superficial epithelium and penetrates only a little bit inside the eye. This is a physiological effect to protect the eye, especially lens and retina for the life period. If the epithelium is intact only a little UVA light reaches the superficial stroma of the cornea. Even Riboflavin which is the photosenzitizer/katalysator for the cross-linking is absorbed by the epithelium (natural barrier). Only a little bit of riboflavin penetrates through an intact epithelium the stroma where the cross-linking effect takes place.



I do not think when we leave the epithelium intact that enough riboflavin and enough UVA light reach the stroma. Only the very superficial collagen layers may be cross-linked.



By removal of the epithelium the effect of stiffening goes much deeper inside the cornea (this is a physiological and even physical way).



We have to wait the long term follow up (2 and more years) if the other technique (to do it through the epithelium) is as good as the removal of the superficial cell layer. we are doing research on this topic with pig corneas (stress strain measurements) and even if a treatment time of 15 minutes may be sufficient.



Fact is: To leave the epithelium intact less riboflavin and even less UVA light penetrates the stroma. Only the very superficial collagen layers may be treated what is (to our opinion not sufficient).



We do it like described (this is for us and our group more physiologic, Riboflavin and UVA can penetrate the stroma much better, the cross-linking effect must/is be much more effective and deeper)



Lets see the results of our research, it takes time.


-----End quote

What do u have to say about this?

[jayuk]

Heath

In my opinion, he is absolutely spot on and told me this himself when I met him. BUT, at that time this treatment was still very new, and I approached it with some diligence; and thus limiting any potential harm to the deeper parts of the my eye from UV exposure.

It was solely my decision to not have it removed, against his actual recommendation, to the point where I was the first person he did this treatment on without removing the epithelia. But I was not in a position to wait for the surface to heal and not wear a contact lens......as at that stage...not wearing a contact lens meant not being able to see, which meant not being able to work, which meant to being able to be paid, which meant not being able to survive and pay my bills...........

J

[Heath]

Thank you jayuk but the question I want clearified is do u think that selection of that treatment option wud be the reason that KC dint stop in the eye?

[GarethB]

Heath,

I think you have asked the hardest question of all and the answer could well be; Don't know.

As C3R is in its early days and still research being done I know the people doing this are carefull who they select.

Should this become a more mainstream teatment we may well see more cases where KC is halted for a while which it can do any way. Mine has stabalised for about 2 years now and many many peoples does.

In much of the published literature the doctors are saying that a repeat treatment may well be needed every 4 - 5 years.

Eveny they are saying C3R should be considerd a management startegy rather than a cure. However a better long term managemen to make lens fitting easier compared to a graft.

[Heath]

gareth can you tell me which procedure did u go for with or w/o epithelium and where?

[jayuk]

Heath

By proxy, I answered your query. Yes, I do beleive that because I didnt have the epithelium removed that the cornea went back to being more conical....and I am basing this on the research from others who have had the procedure WITH it removed and who havent experienced what I had

HTH

Jay

[GarethB]

Heath,

I have not had it done, still in discussion with Dresden as my KC has returned to the cornea my graft is attached to.

The concern is around removing epithilium from the grafted and ungrafted protion, could this induce rejection in a 20 year old graft that has always been exceptionally healthy.

The other issue is that there are still concerns as to how localised they could keep the treatment as there is a risk of thickening the graft which is already as it should be so potentially causing further issues.

I work in medical research and I question everything! Even if I am happy with the answer, I will still ask more questions even if it means arguing the opposite to what I beleive to rty and get the most complete picture possible.

Myself and Dresden feel that C3R will help me, but while we still have so many unanswerd neither is prepared to consent to the treatment.

The questions still to be answerd are

1) How long does C3R last?
2) Are top up treatments needed?
3) What is the potential downside to top up treatments?
4) Can epithelial removal eventually lead to scaring?
5) What proportion of patients go into remission?

The last is carefully phrased as most researches feel it is way to early to suggest C3R is a cure, they feel it is a better management technique which needs further study. We are at the point now that the only way that can be done is if more clinics offer this treatment and are careful in their long term followup and the global data pooled and analysed.

[Matthew_]

This is fascinating! I suppose it is good old British conservatism that stops it being available here! I hope you continue to heal well, all the best...

[GarethB]

Matt,

C3R is now becoming available in the UK, there are at least two private clinics in London and I think Moorfields and Gartnavel in Glasgow have plans to do their own study on C3R.

The pioners were in Germany and also the US.

The UK and Australia seem to be picking up on this quicker than others.