Just been diagnosed

[Andrew MacLean]

There may be a reason that there are only six clinics in the world that offer the treatment of which you speak. Actually, you don't say what the treatment is, so it would be very difficult to say that it was the right thing for you to do.

I am sorry that you are having such a difficult time. In the end, the hospital may offer to transplant tissue so that you will again have a healthy cornea. This sort of treatment would not be available from a high street clinic.

Every good wish.

Andrew

[Dom]

Sorry the link to the treatments is here:

http://www.accuvision.co.uk/keratoconus-treatments.html

Corneal Collagen Cross-Linking (C3R®)

And

Accuwave™ Topography Guided Custom Ablation Treatment for Keratoconus (T-CAT)

I wasn't sure whether a private clinic offering the above KC specific treatments or seeing a private Ophthalmic Surgeon is the best step forwards?

[Anne Klepacz]

Hi Dom,
It's always worth getting a second opinion. And if it's 6 years since you tried contact lenses, it's worth looking at those again. Contact lens technology has come on a long way in the last few years with much more choice of lens types. So there may well be lenses you could get on with and which would improve the vision.
All the best
Anne

[Lynn White]

Hi Dom,

Cross linking in itself is done by a lot of clinics, all over the world, its the T-CAT that is only done by a few clinics.

Cross linking is the procedure that stabilises the cornea, T-CAT is the reshaping. However, reshaping does not automatically mean you will get perfect vision afterwards - you often still need to wear contacts to get your vision back up to full standard. However, T-CAT can, in some cases, make CL fitting easier.

As Anne says, contact lenses will most likely restore your vision and are the cheapest option.

So, what to do ?

It is ALWAYS worth getting more than one opinion although one has to understand that that will often mean you will get different advice and then you are faced with making choices!

The advice I would give a patient of mine is:

First: get contact lenses, so that you can function and drive. Cross linking itself can cause several weeks, or even months, of visual instability and T-CAT does the same, so you need at least one eye visually functional and stable before you even think of any other treatment. You can get contact lenses privately quite quickly (within a week or so).

Second: Once you have functional vision, you can spend time assessing all the options available to you. As you seem to be progressing, then cross linking is definitely something you should consider, as it does stabilise the condition.

Third: Options to consider with cross linking are INTACs and Phakic IOLs, as well as T-CAT. It is useful when looking at these treatments to remember that the first two are reversible (i.e. you can take INTACs and IOLs back out again) where as T-CAT is not, as it involves laser ablation.

Hope this helps!

Lynn

[Dom]

Thanks for the advise. I went for a consultation on friday at Frimley Hospital. He said my left was about as bad as it can get. He said my right eye does have the condition too and took a topography. He said to get me referred for cross linking he would need to show my right eye is deteriating and will see me in 3 months to see if it has. In the meantime will refer me to moorfield for lens fitting on both eyes although he doesn't think a lens will help my left eye and only thing left is a graft.

I hope to get the cross linking and will put mind at rest knowing it's stable. I need to research the graft, I was hoping it wasn't gonna be that bad and from what I've read of what's involved it does worry me.

[Anne Klepacz]

Hi Dom,
Well, although the news about your left eye wasn't what you wanted to hear, it does sound as though you're a lot further forward and with positive steps being taken to sort things out for you. And if the verdict does turn out to be that you need a graft for that eye, there's lots of us here that have been down that road and can hopefully reassure you that it's not too awful! Though some of people who've posted here haven't had a smooth graft journey, there are many others who've had a positive experience.
In the meantime, I don't know if you're already on our postal mailing list. If you're not, there's lots of information we can send you (our basic information booklet about KC plus DVDs of the conferences we've held which cover all the options for KC). If that would be useful, just PM or e-mail me with your postal address anne@keratoconus-group.org.uk
All the best
Anne

[ChrisW]

I can understand your concern about the cost, but would say that by finding a really good optician, that cost can be minimised as can any fears about our condition. I had my first graft in my mid-20s, a re-graft at 50 and that is still going strong 13 years later. My optician has always been the one to pick up the need for treatment (my second graft, a cataract in the same eye and even an oedemia a couple of years after the op) and I have total faith in him. He ensures that i have regular topography mapping, explains everything to me and doesn't hesitate to refer me on to my specialist when need be.

When I was first told I had KC, there was no information given out at all (nor a computer on which to google!) The only thing I could find was a story about someone with it and that they went blind. I've since met (and been able to reassure) other people who had the same lack of knowledge. The truth is that I've had two very successful grafts in my left eye over 35 years plus a cataract op in that eye (a real plus because it correctly my short-sightedness) and, although I'm "how many fingers are we holding up?" blind in my right eye, with GPLs, I forget I have a problem (apart from the sensitivity to light) because I can drive, use a computer ... do everything.

It seems to me that by finding a really good optician who you can trust as being totally competent and knowledgeable about our condition, it can make the management of it very very much easier and less costly. I do hope you find that to be as true as I have.

Chris