C3R - Corneal Collagen Crosslinking!

[jayboi2005]

Glad to hear it Jay, seems you have had some right problems with KC in the past so it is good to hear things are sounding better and thanks for all the help and advice you have given me on C3R i know i ask a lot of questions and can be a pain Keep us updated!

[Andrew MacLean]

Jayboi

Asking questions is never a pain. You go on asking.

Andrew

[jayuk]

Hi all

Just an update on my left eye which was C3R'd!

Well not good news in the slightest now!

The KC has now progressed quiet aggresively in the eye, from a Keratometry reading of 53OD to 61OD in some 6 months....

Having had no other option, I have now shceduled a DALK Partial Graft as the last resort but one that offers a far better overall outcome.

It may be important to note a few things for those that are considering having this done

a) Majority of the research on this treatment is/was based on Corneas with lesser OD reading than mine

b) All of the research currently being spouted (to my knowledge) is based on the treatmeant WITH the epithelium removed

My own thoughts on this treatment now seem to be that due to the mode of application (ie without epithelium removed) I limited the exposure of the ingredient in the surface of the eye. However! How much this had to do with the overall effect on my cornea, I do not know. It was very clear that the C3R treatment worked on my eye for around 8-10 months, in terms of flattening and surface reshapping. However!...I strongly suspect that the collagen effects within the cornea MAY have been broken down by the inherent causes of KC at gene / response level. Whilst there are many variables in this

a) genes;
b) hydration,
c) protein-cell structures,
d) collagen breakdown and by-product
e) cell regeneration limitations within corneal tissue

I would suspect its impossible to nail down which one was responsible!

But i dont regret having had this treatment for a second as it has bought me 12 months recovery time whilst my transplanted cornea recovered.

Anyway! Onwards and upwards and I now can continue with th DALK knowing that I had explored every other route, inc the DALK, to avoid the potential disadvantages of a Full Penetrating Graft!

Jay

[Andrew MacLean]

Jay

Thank you for the update. I am sorry that things did not go better for you.

None the less I remain impressed by the courage and resolve with which you went into the treatment.

Andrew

[GarethB]

Jayuk,

I thing depsite the current regression it is good you still have a positive outlook.

You took a huge leap of faith and kindly kept us updated of everything you have gone through.

Great news on the succes of the graft, I am sure you will have eually positive results with the second.

All the best.

Gareth

[Louise Pembroke]

Me too Jay, I echo Andrews sentiments

[jayuk]

Thanks alll!

As I said, the 12 months it bought was invaluable to me to be really honest. And as started out this treatment my whole aim was to halt its progression whilst my other eye recovered.......so I cant really complain....however I would, if I was to do this again, ensure that the application was done with the epithelia removed.......but 20/20, hindsight and all!

Well Ill put a close to this thread now; although my consultant may be keen to take a look at the corneal layers once they are removed to see if there is any difference......so if theres an update.....Ill def report back!

Jay

[Act44]

Hello Jayuk,

I wish you a good recovery.

Could you explain in how many months did your progression and regression occur ?

Have you informed the Dresden team who made your C3R. What do they think of this ? Is this short term effect frequent with C3R without the removal of epithelium ? (do you know some other cases ?) Can this happen if epithelium is removed ?

Thank you very much for all.

[jayuk]

Hi

I have been emailing various people over the course of the day both in Europe and USA...just to reflect on the findings on whats happening to my case...as few have asked me to keep them informed.

To answer your questions

Could you explain in how many months did your progression and regression occur ?

Regression occured practically instantly and continued over around 5-6 months. It then stabilised, and it would appear that in the past 12 weeks the KC has got worse. So over the 10-12 months, I have had around 9 months of regression and stabilisation, and then 3 months of progression.

Have you informed the Dresden team who made your C3R. What do they think of this ?

Well when I had the treatment I was made aware that for best results the Epithelium should be removed. However, there is contradictory information available from the USA which indicates that the solution does actually penetrate the initial layers to have the required effect.

Is this short term effect frequent with C3R without the removal of epithelium ? (do you know some other cases ?)

I can only go on my experience; and say that the initial regression was quiet alot and did give me some vision back..even though this was measured by holding a fone at arms length!


Can this happen if epithelium is removed ?

From the information I have, and what I have been told; there is a very small percentage whose KC has progressed; but to what degree I do not know I am afraid....but all the research available to date within Europe was based on C3R WITH Epithelium removed.

HTH

Jay

[Act44]

Thank you very much for your very interesting answers.

You said
"From the information I have, and what I have been told; there is a very small percentage whose KC has progressed "

This small percentage ? Is it sure it exists ? and after how many years ?

Thank you very much indeed.