C3R - Corneal Collagen Crosslinking!

[jayuk]

Just thought Id update this as well...after seeing Gareth's post

Basically, cornea has flattened quite a bit now, however I have still not been able to get an accurate thickness reading.

I can still feel the changes in the Cornea..some 5 weeks later......and I have been told that I should expect changes for up to 3 months (usually stops at the 2 month mark)......I can still see my fingers at arms length (which I couldnt before) and can now also see the clock on my Nokia fone at 1/2 arms lens (which I couldnt before)....as we can see I use very scientific experiements lol........

I havent tried a lens yet....but may do now this week.

I have emailed over a recent topography to the team over in Germany and they have confirmed the flattening and also have commented on the structural change and its more regular appearance...which again is fantastic news....I am hoping that this regularity will allow a lens to sit more confortable on the eye (he praise at this point!)

One thing I would point out though, is that this treatment has still not got the CE mark within Europe. This means is hasnt been passed YET.........so anyone thinking of having this done would need to sign away various things...so as not to hold anyone responsible.

However, from the research paper that I have, I would seriously ask anyone who is at the mild / moderate KC stage to take a look at this treatment.....hell even those in advanced who want to potentially avoid it getting worse and thickening the cornea.

Will update; hopefully this week, when I try my old lens back in the eye.

[GarethB]

Hi Jay,

Your tests may not be scientific, but they are relevent to the real world, seeing your mobile etc.

Regarding the lens wear, with such a change in vision my thought is that postponing lens wear may be advisable until you have a lens for the new surface. After such an improvement, the last thing you want is to wear a lens for a steeper surface and risk harming all the good work.

Is still positive news, bith graft and C3R.

[sami ahmed]

hi.my son 15 years old has KC right eye vision 6/12 left 6/6 only diagnosed 4 months back incidently.he is otherwise not limited in daily life .we had the corneal mapping and now wait for ?lenses,my questions are that of a worried parent 1-does he need lenses if that is not going to do any thing in terms of halting the disease i-e when would you start wearing lenses 2-could you let me knoe the address of dersden people and would you say i should get in touch -the idea of halting disease is promising-and 3-how could i know what is to be discussed in conference that you mentioned...many questions.. many thanks...

[jayuk]

Hi

1-does he need lenses if that is not going to do any thing in terms of halting the disease i-e when would you start wearing lenses

Yes he does, having lenses will enable him to see whilst having Keratoconus, Contact Lenses should never have been even though of as stopping KC and it does shock me even now that people could have thought this.

2-could you let me knoe the address of dersden people and would you say i should get in touch -the idea of halting disease is promising-and

Please check your PM



3-how could i know what is to be discussed in conference that you mentioned

Pass - question for someone else to answer on this board possibly

[GarethB]

Hi Sami,

Depending on the severity of the KC, good sight can still be achieved with glasses, my graft in my left eye is flat and has some irregular astigmatism and uncorrected is worse than 6/12 but with glasses I can still get 6/6. KC is a very unpredicatble thing.

For the confrence notes, these are still being put together I believe, but if you go to

http://www.keratoconus-group.org.uk/aims2.html

and e-mail Anne Keplatz whose e-mail ink is at the bottom of the page, she will sort out getting news letters and other information to you.

Regards

Gareth

[Ken G]

This is fascinating stuff. Jay, I salute your pioneering spirit and bravery. Please keep us all updated on your progress.

A thought has occurred to me. If this Collagen cross linking procedure is consistently successful at both thickening the cornea, and flattening it, would it not be possible to undertake repeated administrations of the treatment until the cornea is more or less 'normalised'? At such a point would laser corrective surgery then not be a possibility?

[jayuk]

Hi

One of the issues relating to C3R is that there is no control as such as to how much and how long the Cornea thickens for.

Whilst there have not been any reported excessive thickening; I think the general thinking is to wait for longer evaluation of the treatment.

WIth regards to repeat treatment, I was told that the treatment can be repeated twice around 3-6 months apart......however I would be concerned when exposing UV to the eye direct too many times. Whilst the exposure is not damaging for the 30 mins treatment, I would want to risk having ti done too many times, incase of issues in the longer term......but quite right; if this is nott he case and there is no side effects its def a potential solution

J

[jackuria]

Hi guys
Has anyone had the C3R treatment at London Vision Clinic?
I've been there for an examination (very thorough) and know that they're offering this treatment for KC.
Could save someone from going all the way to Dresden Germany as well.

[jayuk]

What are the charges for this?...

I beleive there are now 3 in the UK that are about to, or are offering this treatment.

Just be careful and ensure they know what they are doing.......

[jackuria]

London Vision is charging £3000 for both eyes. The surgeon is very proffessional and I do believe he knows what he is doing.
Visit the website at http://www.londonvisionclinic.com.
The equipment they have there is very state of the art.
What other places are offering the treatment in UK?