UK Keratoconus Self-Help and Support Association

Hi All!

Well thought Id give another update on my "other" left unoperated bad eye!

Things had got worse where I could NOT get good vision from ANY lens and was going about with 2 days on 1 day off with lens wear with unacceptable (to me) vision.

However, thats by the by!. Not sure how many here have heard of C3R cross collagen linking but this is what I had performed this week in Dresden, Germany

An overview for those interested is here

http://www.keratoconusinserts.com/cornea.html

The Pioneers of this treatement are in Dresden, hence why I went there.

Basically, to summarise this; our Keratoconic Corneas basically lack an important element called COLLAGEN. This link breaks down in the cornea and this this is one of the reasons why the shape changes occur in the cornea..and why we have all this problems!

C3R has been around for 6 years nearly, however is performed only in a few places. Dresden, USA and Mexico (and also Italy now).

The guys over at Dresden have extensive research in this treatment for KC and have now treated close to 200 eyes with a 100% success rate of STOPPING KC progressing. YES....it has stopped ALL cases of KC in there tracks!.

So what is it?.Basically its Riboflavin drops (mixed with a co-enzyme) which are applied to the eye and then a UV light is shone on the cornea for 30 mins.....topping up the Riboflavin drops every 5 mins...

There are two ways of doing this treatment

1) with the epithelia removed (scrapped off; its a 70micron layer on the cornea that grows back in days)

2) without the epithelium removed.

Option 1 requires the patient to be without Lens for anyway from 1-3 months, where Option 2 is alot sooner; AND LESS PAINFUL.

I went for option 2 as I couldnt risk being with out a lens for that amount of time!.

My main reason for doing this treatment was to thicken my cornea (thus avoiding Hydrops) and also to stabilise the KC; whilst my Operated Grated eye heals!

So here I am! Back home, had the treatment, had 2 days of a really wierd intra-corneal sting..and now Im ok.

What do I hope to have gained?

a) Regression of the Cone by upto 4 Diopters (has been more in alot of cases)

b) thicken my cornea from a current 354 to 430 microns

c) Able to have the lens I wear in that eye to give me better vision!

So I have to wait 4 weeks whilst the cornea restabilises and then I will be able to see there results.

Just so ppl understand this wasnt something I did on the Whim lol. I had been following this treatment for close to 3 years now, and had asked every possible question and there risks! My main question was around the UV exposure to the Cornea for 30 mins. The dose of UV is the equivalent of spending 2 weeks in Australia on your holidays! Clearly, there is a risk to anything we do and I took a risk, if you want to call it a risk, in exposing my eye to 2 weeks worth of Ozzy Sun!

So we wait now!....and see how thick the cornea has got, and how flat it has reshaped itself to......

(FYI - In the UK trying to talk to anyone about this treatment was extremely hard!..Noone; barring a few, would give it the time of day and not even think and look at the research papers! and the upside! Clearly the treatment is new - ie 6 years, and there are slight risks....however My thoughts were that if it didnt work in worse case scenario..hell Ill have to DALK the eye anyway!...so this was just a last option! SO either way, worse case, id have had to have a graft!

Hello Jayuk, and thanks for sharing that with us. All very interesting, and I had certainly not heard of it before.

It also sounds rather non-invasive (your option anyway), which is good!

Best of luck with your healing process, and please keep us up to date with your progress.

Hi Jay.
Riboflavin???
That's just vitamin B... err, B2 I think.

If Vit B2 can have that effect on corneas, how come a Marmite junkie like me wound up with KC anyway?? - no, don't answer that.

Hope it proves to ahve done the trick for you, anyway. Heal well, and do keep us posted.
Rosemary

Lookforward to hearing the results or should that be seeing

I bet you wish you could have gont to Oz, sit on the beach while a nurse puts drops in your eye as you look out to sea and soak up the rays!

Marmite does have a lot of vitamins in and I too used to be a marmite junkie. Not so much now as my wife will not come near me if I have it. Bit of a pssion killer.

Next time my eye really hurts, I am sure adding marmite can not make it hurt any more!

I really hope it works as since the question was raised at the KC confrence I too have been looking into it as it would be a good solution to my right eye problem. My wife is German, so getting a place to stay would be fine for any follow up.

Regards

Gareth

Rosemary / Gareth / John

Yes it is Vitamin B2 however it also contains other co-enzyme elements which allow for the whole process to take place under the UV light.

Def will keep people updated as I think this really is a solution that ppl who have early KC need to pay attention to......as its halted all cases of progression of KC...

If any one wants the exhaustive study on this PM me and ill email it. Its worth seeing and reading and answers alot of questions about it. There is a conference on this treatment in Zurich this December whereby it is all going to be discussed and presented to those in the field around the world.

Not sure when its gng to be available in the UK though as I am led to beleive there is alot of red tape around its trials.

Hi

Just thought Id provide an update to this

My Left advanced cornea has now regressed from the topographys taken on Friday and my readings were

Pre C3R - 5.61 MM Curvature
Post C3R (3 weeks) - 6.00

This indicates that the cornea has flattened from the treatment!

I shall be getting thckness measurements at the end of this month!...But this is really good news for me!!!..as I should have stopped the potential onset of Hydrops (cornea was very thin before the treatment - well it was 290um at this thinest and 354 um at the centre WHICH AINT GOOD) and also MAY allow me to get better fit/vision from lenses!

I have not put a lens in the eye now for 4 weeks however shall be giving this a go end of this month!!

J

Great news Jay. Hope the lens wear will now be all good for the ungrafted eye.

Hi Jay

Fingers crossed for you, hope all goes well with thickness measurements.

On the subject of Marmite I too consumed rather a lot during childhood, along with Bovril as well, especially on toast. Funnily enough my husband finds it somewhat of a passion killer and was not amused when I introduced our son to it's wonders!

Susan

Hi Jay,

I have a graft in my left eye and mild Keratoconus in my right eye.
If you don't mind how much did the treatment cost or can the NHS refer you for it?

Thanks Robin

Hi Rob

I am afraid this isnt yet available formally in the UK, however a particular Eye Unit is in the process of making it available for trials.

The cost over in Dresden was 500 Euros. I am led to beleive the cost here in the UK MAY be as much as £2,000 however dont quote me on that.