Cross Linking

[street_spirit]

OK so it looks like I will go ahead with this, as from what it seems the benefits way out way the risks of not doing it.

Currently I only have the condition in one eye so only having it in that eye. The price while not ideal is attainable (1000, including 4 weeks follow ups). I suppose what concerns me is, am I right in saying a lot of people don't seem to be getting this cross linking done? I just wondered why? All I can see as the only risk is a very small risk of an eye infection in the first week, which is also a risk if you wear contact lenses anyway something you'll likely progress to anyway if you don't have the treatment or am I missing something? I spoke to my GP about it, and while he didn't know much about the condition he could tell me that the eye doctor that would be doing the treatment is known to be the best in the region so that's reassuring.

At the moment the only thing I really have trouble with is reading small text on signs slightly in the distance, I have some glasses but I don't really wear them much, occasionally when driving or to read some text. So I would like things to stay the way they are. I'm not really inconvenienced in anyway by the condition currently, but there's something in the back of my mind thinking it'll make it worse, is that stupid!? Be honest...

[GarethB]

Welcome to the forum.

One thing to bare in mind with this forum is that most people who visit are having problems with their KC and it is often at such an advanced state that their cornears are too thin to consider CXL. Then there is the cost, so they are waiting for it to become available on the NHS while others are waiting to see what the longer term effects are regarding those who have had CXL. I am sure there are plenty of other factors too.

That said we are getting more and more people posting here who have had CXL and who arewilling to share their experiences.

From what I have read, initially vision is worse after CXL and then as the thickening process continues the vision can fluctuate up and down for a number of months afterwards.

Hope this helps.

[street_spirit]

Thanks for the reply,

yeah I suppose the one thing that concerns me most is the long term effects, although it was discovered in 89 I believe in Germany or Switzerland and its been done as a preceduor now since 1998? So ten years, and of course its a approved drug in Europe and what not.

What annoyed me is when I spoke to my GP about it, to see if I could get it o the NHS, is that he said it's not on the NHS as its still considered a 'cosmetic surgery' which seems ludicrous to me. It might be the distinct lack of knowledge about Keratoconus which is why he said it but seems mad why it's not in the NHS already. Surly this must be massively cheaper then a transplant if it comes to that?

I've not found any horror stories about it going wrong though, only that for people who had to done a long time ago it seems to have 'worn off' so to speak, but I assume that just means repeating the treatment.

[Lizb]

Crosslinking is still under trial in the uk, so not widely available on the NHs though if you could get onto one of the trials it would be. I am still trying to find out where the trials are taking place myself - nothing in northwest england that i have found so far. Not sure where you are in the UK.
Saying that Intacts arent available in the northwest, even though they are meant to be available on the NHS (that i have found anyhow - I would happily be corrected if anyone knows anything different).
I am also looking into crosslinking, though i think my condition is more advanced than yours at the moment, i have found the only private clinics that do the cross linking are in the south east, which means additional cost on top of the actual procedure in time off work, travelling and accommodation expenses for me to consider and save for. Again if any one knows anything different please correct me.

[street_spirit]

Hi Liz, thanks for the reply. I didn't know it was in trials on the NHS, that is interesting. Does anyone know the time period that things are usually on trial to being generally available?

[GarethB]

Cross linking isn't cosmetic, its just due to the way our health system is funded compared to the rest of Europe in that the tax payer funds it the government need to show the tax payer is getting value for money. The downside is that new treatments have to be trialed by the NHS and reviewed by NICE who make the decision to make it available on the NHS.

We had this a few years ago with intacs and NICE contacted the group to get patient feedback on thsi procedure which is now available on the NHS. We hope the same will happen with cross linking, so if you have it done, please keep us updated on your progress and if NICE contact us we will be wanting your comments to pass on to them.

[street_spirit]

well having it done Tuesday...

Still wondering if it's the right thing to do, even though from what I read eye infection chance is about 1 in a 1000 and scarring risk is a minimal risk. I'm a bit of a hypochondriac so thinking if it can go wrong it will go wrong, or for all I know my eyes might not progress at all so while it maybe a small risk it could be an unnecessary risk...

[street_spirit]

this source seem to put the benefits and risks in black and white if anyone is interested http://kcglobal.org/content/view/11/25/

[Lizb]

well having it done Tuesday...

If you dont mind me asking who have you booked your op with? where are they based?

That goes for any other people who have had the op done privately, if you dont mind sharing who you have had your op with I would appreciate it.

[street_spirit]

In Plymouth, at Nuffield Hospital with Dr Nabil Habib http://www.visionplymouth.com cost is 1000 per eye including 4 weeks follow up. Dr Nabil Habib comes very highly recommended.

Not sure about it all now though, increasingly wondering if this is a good idea or not, I can manage without glasses, I'm 23 just thinking if waiting a bit longer would be a better bet, that is if I can now.