Hi all, I'm new here and have a question!

[scottz750r]

Hi everyone,
I was diagnosed with Keratoconus in my right eye about 4 years ago now, i have yearly check ups and as of yet, it hasn't 'progressed'
I'm 23 at the moment, and worried that it'll get a lot worse. it's already quite bad if i cover up my good eye. fortunately my other eye is great and i have very good vision with it.

I often get headaches due to me being paranoid about it getting worse and constantly covering up my good eye and testing the eye with Keratoconus to make sure it hasn't got any worse. I know this won't help me in anyway, i'm just scared about it progressing and i'm fixated with it.
I've been looking into treatments and come across the cross-linking and intacs plastic rings.
My main question is, has anyone here had either of the above mentioned treatments? if so.. how has it worked out for you? i feel the intacs plastic rings would work well, but i don't really know a great deal about it. And the cross-linking i've heard is a new treatment and i suspect it'll probably cause problems a few years down the line such as, having a dry/itchy eye or perhaps even making your vision worse.

Any help will be greatly appreciated!

[kieran19685]

Hi

Are you wearing any lens on your bad eye to improve the vision?

Are there any signs of KC in your good eye? from what i have heard is that its very uncommon for KC to only affect one eye and not the other.

I would look into cross linking on your bad eye. I am currently looking to have Cross linking done on my good eye.

Thanks

[scottz750r]

Hi Kieran,

No, not wearing contacts.. they tried me with a hard contact lens which felt horrible and my eye wouldn't stop watering. when it did calm down my vision wasn't really any better so they said not to bother with it.

As for having it in my other eye, they haven't mentioned it.. you've made me worried about that now so i'll have to ask next time i go for a check up.

[Anne Klepacz]

Welcome to the forum!
The fact that your KC hasn't progressed in 4 years is really good news, as is the fact that you seem to get good vision without glasses, let alone contact lenses. The twenties is when KC is most likely to progress, so you're doing really well and may find that it stays stable. Though your headaches might be less to do with you being 'paranoid' and more about your brain getting tired with compensating for the KC eye.
The idea of Intacs is to flatten the cornea - they are usually used when it's difficult to fit contact lenses because of the shape of the cornea, or to improve vision for people who can't tolerate wearing a contact lens. They don't do anything about progression of KC though.
The aim of crosslinking is to stop progression. It's been available privately in the UK for 7 or 8 years, and in Germany, where it was invented for longer than that so it's not that new. But in the UK it's only been available on the NHS for a few years and only in a few hospitals. To qualify for crosslinking on the NHS, there has to be evidence of progression over 6 months.
If you use the search facility on this forum, you'll find quite a few posts about both procedures from people who've had them. And if you'd like our information booklet about keratoconus, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you one.
I'm sure other people will be along to tell you about their experiences.
Anne

[scottz750r]

Hi Anne,
Thanks for the response, very informative.
Do you know anymore about the Crosslinking with regards to possible after/side effects? or whether it causes problems a few years down the line?
I'll definitely have a look through the Forum later on tonight when i have a bit more time.
Will be nice to hear from others with the same problem and see what there experiences with treatments are and how their dealing with Keratoconus in general.

[Anne Klepacz]

Well, no procedure is risk free. According to the stats, about 3% of those who have it done end up with their vision worse than before. Have a look at the newsletters on the home page of this site - the spring/summer 2013 one has a summary of a talk we had at one of our meetings from the Corneal Fellow at Moorfields and he talked a lot about crosslinking.
As for further down the line, as far as I know, there haven't been any side effects reported after a few years, but of course no one can be certain whether there might be some 20 years later!
Anne

[CrippsCorner]

After having CXL done I realised that in all honestly, it's a very simple procedure. They scrape off your epithelium (in most cases) which grows back over night... that's really the only risk, that you get an infection, but you're given a 'bandage contact' to stop this from happening.

After that's off they're just dropping vitamin c into your eye, it wasn't painful at all at the time, it does hurt after the painkillers wear off, but literally only for 24 hours or less. If your keratoconus is absolutely solid and not getting any worse then it's up to you if you think it's worth it. For me, my eyes were deteriorating but quite slowly, however I figured there's no point in just waiting until they're worse, so went ahead and got it done. Yes in most cases both eyes will be effected, make sure you get a CT ASAP then you can see if there's any progression.

Oh and regarding contacts they started me off on RGP's too which I hated, but I switched to softs and they've been much better... although I still prefer glasses, even if my vision is slightly worse with them.