C3R - Corneal Collagen Crosslinking!

[Heath]

I heard Prof Kolhass has moved to dortmound from dresden .... or are they the same places.

If not can somebody provide me contact information for dortmound...?

Thanks

[Prue B]

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.

One of the opthals working on the study here is really hopeful it can be used on the tissue surrounding the graft as you mention. This will be considered if the first study is a success.

As far as questioning everything. I do that to. I feel a devils advocate is a handy information tool and sometimes really clears issues and other times raises more issues, but it is good to question.

[jayuk]

Jus thought Id add an update.

The C3R'd eye has not changed yet again since last appointment. Whether this is because of C3R or my KC in that eye stopping I cant say...

[BlackA]

Jayuk, I'd like to ask a question if you please.

You say you had the C3-R with a corneal thickness as low as 357 microns.

The article in the previous page

Experience with C3R finds new indication, safety criteria

sets a new safety criteria of 400 microns (22 Feb 2006). The reason given by Dr. Seiler is that the radiation can cause endothelial damage in thin corneas.

¿Was this known when you had your treatment?
This is important to me because I have a similar thickness(356 mean,342 thinnest ).
The removal of the epithelium makes this even worse. As you know ¿Is useless to have this treatment without the epithelium removal? I guess this could be my only hope in my thin cornea.

It seems only 7% of the UVA light reach the endothelium in the standard cornea, being the 65% of the UVA-light absorbed in the first 200-250 microns of the cornea and the rest in the deeper layers. Sadly we, owners of 350microns corneas, don't have deeper layers after the 70 microns epithelium removal

In the other hand I am also looking for an intracorneal rings implant. They are not mentioned in the Dresden hospital, ¿Do they have experience with INTACS?

I think I will contact the Dresden or the Zurich hospital. I will keep you inform about the professional answer.

[jayuk]

Black A

No this was not known. This is why I err'd on the side of caution. I was the first that they performed this treatment on at my request without the Epithelium removed...and this was one of the main reasons. I was aware of the dangerous of UV exposure to Endothelial cells, but what had driven me to the decision was that at that time there was no furtehr data on the longer term effects of UV exposure on exposed Corneas.......

I think it was one thing having a new treatment performed, but approaching it in a dilligent fashion\manner is what Id only do...

[BlackA]

Thank you for your quick reply jay.

I will ask them about the convenience of having it without the epithelium removal in my case.

[beckham7]

In response to all re C3R. My daughter has just has this treatment done in UK at Royal Victoria in East Grinstead. Non invasive and I suppose her eye was sore for about 1 week. Early days re changes as she is only 3 weeks down the line but as a mum to do this for her, she is only 18, was the only thing we could do for now. She was lucky pre treatment though as she was able to see reasonable well with specs. She tried contacts but found them much to difficult! I will keep you all posted as to how she goes on. Mr Daya from the Centre for Sight is highly recommended though.

[John Smith]

Hi Beckham, and welcome to the forum.

Thanks for keeping us informed of your daughter's progress. With any luck, She'll keep her reasonable vision now that she's had C3R.

Mr. Daya was the keynote speaker at last month's conference. Hopefully, we'll have the DVD available in the next few months.

[unknown23]

hi

i had done c3r b4 1week but it seems now that ... KC is increased due to this or i m feeling like that there is still haziness and my glass number has been increased

but anyone let me know how much time it takes to fully recover cornea, i had done by removal of epithellium

please mail me at ravi.padia@gmail.com

[Andrew MacLean]

unknown23

Welcome to the forum

I am sure that you will hear from people, but I would advise against posting your eMail address on an open string. The forum is visited by "web-bots" and you may be inviting SPAM by posting your eMail address like this.

Andrew