Collagen Crosslinking ? ? ?

[Louise Berridge]

Hi Bluesfan, I'll try to let you know how I found the C3R.

Sorry to hear you have not had a good result from C3R Jackura. It's one of the very few bad stories I've heard.

As you've read some of my posts, the onset of KC was very rapid for me, at the end of last year. Only 1 cornea had been effected at the front and my vision deteriorated from perfect to 6/9, 6/24, 6/36 within a couple of months. I would say it was considered somewhere between mild and moderate.

I had the treatment at the London Centre for Refractive Surgery, in London in November 2006 and had complete confidence in the surgeon (Mr Jory) and the procedure. Particularly as there is no current alternative to potentially slowing/halting progression of the disease.
The procedure seemed very minor and it was very stingy for the rest of the day and following night, but OK the next day.
I did obtain some change in shape of the cornea, some flattening and a line or 2 of improvement on the chart, not huge amounts though. At my last check up, there had not been any further progression.

I had INTACS, in the same eye, in April and on a following check up, KC was detected at the back of the cornea in the 2nd eye. Although my vision was uneffected in that eye I had C3R again, this May, to try to stop that getting worse. It's a bit early to tell what effect that has had, but my vision is virtually back to how it was in that eye.

My first eye is not as good as shortly after having the INTACS done. Just hoping that's not progressed.

I would totally recommend the treatment as in my view, and the specialists, there are minimal risks, compared to the threat of progressing KC.

How bad are you effected?

Please feel free to ask me any questions.

Cheers
Louise

[helen jones]

I had cross linking done at a different clinic. My KC is moderate and my corneas were well within the thickness needed for it to be successful. My consultant only uses one method - the epithelium removal which he said is the original one used and the one that studies have been done on. My first eye was done 10 days ago and I can already read an extra line on the sight chart although the consultant said it may not stay that way. In reply to previous postings , I too had the blurring/ghosting and still have. Think this throws up how much we are at the mercy of individual consultants and their own theories. I spent a long time choosing a consultant and one thing that concerned me was the extent to which at some clinics I felt they were out to make money - not mentioning specifics for obvious reasons!
Helen

[bluesfan]

thanks Louise for the feedback!!i currenty have 450 mircons and 500 microns at the thinnest point in both the left and right eyes resepctively (although pachymetry readings show number that are slightly higher) KC in My left eye is definitely more advanced than the right.

Good to hear from you helen jones and I hope you re recovering well!! I cetianly hope you can retain the progress made as well! I was curious though about what you said: "extent to which at some clinics I felt they were out to make money - not mentioning specifics for obvious reasons!" could you please shed some light on that so we can al learn from your experience? what spefics were they holding back and why do you think they did so?

thanks!

[bluesfan]

I would REALLY appreciate it if anyone here knows about the Barraquer Centre for Othalmology (they are n Barcelona) and whether anyone had experiece with them fr C3R. All local opthalmologists have reccommended Baraquer to me, but I have yet to hear from anyone who had 1st hand experience with C3R with them and their capacity to do it. Thanks!

[helen jones]

Sorry bluesfan you misunderstood my posting. I meant me not mentioning specifics i.e naming the clinic I was talking about as I know we're not supposed to mention specific clinics or consultants for legal reasons

[GarethB]

Naming of consultants and hospitals we used to let people do and were very liberal.

Unfortunatly this year negative things were said about consultants and clinics for which the Support Group had no evidence to substansiate so we removed them. Despite this we still came close to prosecution under the UK liable laws!

Now doing things using the private message system is perhaps another matter as these are not in the public domain. I may be wrong though, so Bluesfan if you pm'd Helen your e-mail she may well discuss things in more detail outside the forum

[bluesfan]

Thanks helenjones and GarethB for the feedback! Wow I didn't realize the site got close to prosecution!! We don't want that!! Of course I think this site is VERY useful and people like us need as much support and info.

Well I guess that means my query regarding Baraaquer is unlikely to get any public replies!! If anyone has soemthng to say or info to share on that.. please PM me!!

Thanks alot everyone for your input to this thread, keep them coming!

[GarethB]

Bluesfan,

To be honest I think the reason there is yet to bea reply about Baraaquer is that we are a UK charity and the number of people using the site outside the UK are relatively small number.

There are support groups in other countries but I think you need a google search int he local language of the area of interest.

[bluesfan]

Hello Louise .. was debating whether i should I PM you or just write here, but I figured here is better so that info can be shared with other members too! I just wanted to ask you about how you were doing since you last posted in terms of your treatment

Hope all is well!

[LOUISE B]

Hi Bluesfan,

Thanks for enquiring.

On my last visit to the surgery, a couple of weeks ago, the topography seemed to be very similar, in both eyes, to a month to 6 weeks previous. However, my vision in the eye with INTACS, is not as good as then and now similar to how it was when I was first diagnosed. Apparently, the surgeon was surprised how good my vision was, after the INTACS, in comparison to what the topography was showing and it seems, now it's settled, my actual vision is what the computer says it should be for the shape of my eye. So I had good vision for a few weeks! It's a bit disappointing, but I just hope the progression has stopped. It's encouraging because I was progressing rapidly in my bad eye a year ago. The good eye has almost returned to how it was, but not quite as good. He thought there may still be a bit of inflammation as there was a small area of steepening on the topography. Hopefully that's all it is!

How are your eyes and have you decided on the C3R?

Best Wishes
Louise