CXL abroad or UK

[naveed]

I want to know a few things....

I have the following situation ...

My Right eye cornea thickness is 417 ... i want to get CXL ... where is the best ... how much is it painful.

My left eye is 370 with very bad situation , little bit of scarring , and eyesight -6.2 with pin hole. anywhere CXL can be done . (i know in U.K 400 is minimum ) but i have heard there is a teacnique where CXL can be done for less than 400 as well.

I know CXL will not correct vision but usually I get very good vision in RGP .

So what I want is atleast it stops here and i dont need transplant .

Can anyone suggest any clinic in u.k or abroad .

Also what are chances of hydrop at 370 .

thanks and very worried

[rosemary johnson]

I doubt if there are any figures for the chances of hydrops at any particular thickness of cornea.
They just happen, and no-one really knows waht sets them off.
And I've never had the thickness measured at all, let alone around the time of any of my 4 hydrops.
BUt please don't let the risk of having a hydropsworry you, or use it as a main reason for doing (or not doing) anything. They are survivable, and though some are worse than others, many just heal over and you go on as usual. A hydrops doesn't necessarily mean an imminent transplant.
Rosemary

[naveed]

Thanks ....

[Andrew MacLean]

naveed

Welcome to the forum

I am not sure that we are in a position to promote particular clinics here, but you may at least be equipped with questions to ask when you see a specialist.

Andrew

[GarethB]

The last KC confrence the group had, it was mentiond CXLcan be done on sub 400 micron as they have ways of making the cornea 'swell' so it is at 400 micron again.

My personal view is that we 'think CXL' stops the progression, the evidence does point to that, but we need 30 years data to have confidence. I say this because grafts have been done for over 100 years and no one tells you that KC can come back in the ungrafted tissue, even if you ask. This is because you have a far higher chance of rejection which in itself is not that common and in many cases is stoped/reversed and that is the last of it.

[Grifteruk]

Dear Naveed,

I have had CXL on my left eye after INTACS. My primary reason for both procedures was a thinning of the cornea, and at one measure was down to 334 in my left eye.

When I had the procedure done in Sept 08 (privately in Swansea, South Wales) the measurement reading in my left eye was hovering around 360 at its thinnest point. The Doctor who treated me said that he had the option of two types of Riboflavin drops dependent upon the thickness of the cornea. One could be used if over 400m whilst the other was used for a cornea under 400m. The drops he used on me allowed the cornea to swell to a point where it was over 400m and as I reached this point, the laser part of the procedure was started.

I cant remember the technical words he used for it, but he was perfectly happy with this and as I understand it the drops used are commercially available. So it is possible to have CXL with a thickness under 400m, and I am proof of this!

[naveed]

Hi

Thanks can you any chance give me details of that private doctor.

That is a big news for me .

Once again thanks and I hope you are ok now.

[ChristineW]

Some info which may be helpful:

The cornea has an important role in filtering out ultraviolet light and preventing it from damaging the retina. In CXL they use ultraviolet light as part of the proceedure, so it is important that the cornea is not too thin. You don't want to cause a retinal problem when you're trying to treat a corneal one!

For CXLto be approved by NICE for use in the NHS they have to do pilot studies to prove it works. As far as I am aware, there are a couple of pilot studies getting going, but it's all very slow. That's why the technique is only available privately at the moment.

Best wishes
Christine

[Lynn White]

Hi Naveed

What they basically do with a thin cornea is instil distilled water which makes it swell. Your normal tears are actually salty and meant to be that way. So washing your eyes out with plain water can make tissues swell, which is why people get puffy eyes if they cry a lot or if their eyes run from hayfever.

Once the cornea is thick enough, which is generally accepted as 400 or more, then they can apply the UV. Below this thickness, as Christine says, the UV can harm the internal tissue of the eye.

Quite a few surgeons are using this technique privately in the UK and it is being used in Europe, who are ahead of us here in the UK with pilots etc. The testing by NICE may seem pedantic but they have a duty to make sure these techniques stand up to the ethics and protocols laid down in the NHS. Private surgeons are watched over by the Healthcare Commission.

Lynn