An update on little newbie me!

[Emma Stevenson]

Hello Folks!
Well its been about 11 weeks since I found you all and had my rant about KC in general.
I've had another check up today, and thought I'd let you all know how I'm doing and pick your brains too.
So since the 'pink eye' day I've been trying to wear my right lens but have been struggling, some days it goes in fine and remains that way, other days its a blessed relief when I finish driving to work and can whip it out for the day. Basicly it seems like my right eye is coming to the end of its lens wearing life. My consultant has advised me to limit the wear when I can, but thankfully understands that good sight is essential to driving (especially when I told him I drive my hubbys pride and joy - an alfa 156 - thought I'd stumbled onto the set of top gear when he started asking loads of questions about it, and insisted I name my car!!!!!) and life in general. I went to the cinema the other night, and lens wouldn't settle, so watched it fuzzily - so annoying. So, he's arranged to see me in 3 months and see how its all going. He's now mentioned a graft a couple of times, and actually sounded quite serious about it today.

So here comes the brain picking bit. Am I right in thinking that a graft will essentialy make it easier for the lens to stay in? What kind of recovery period am I looking at? If the grafted eye needs a lens afterward, how long till I can put one in? How long a hospital stay do you have? And please tell me anything else that might come in handy please?

For now, the left eye seems to cope with my lens fine. After reading about the C3R treatment, that to my understanding seems to halt the progression of KC, would it be a good idea to go down that route for that eye?

Thannks for all your help, even though I don't post very often, I'm a regular visitor to the forum, so hello everyone!!!!

[GarethB]

Before giving up on the lens, there are other types of KC lenses. It depends on the irritation. I had really low lens wear but a change in diet, drinking more water and lubricating eye drops changed 2 hour lens wear to over 12 which has been the norm for over 12 months.

Scleral lenses do not touch your cornea, but cover the whole white of the eye too.

There are softlenses especially for KC depending on how advancced it is. My KC is quite bad, but the soft Kersoft lenses hold some promise for me.

C3R is being used more, but currently only available in the UK privatly. The selection criterea is quite strict and they look at corneal thickness so there is no guarentee. The population of KC suufers that have had this treatment post 5 years is still small so the data is still limited, but would appear to be promosing.

The same applies for intacs regarding selection; look in the FAQ section.

Corneal graft is the last resort, but recovery is unpredicatable. Some get good vision within 6 months, others it can be as much as 24 months.

All procedures are aimed at providing a better corneal surface whereby vision can be corrected. This is by either glasses or contact lenses.

My grafts are neary 20 yeasr old and I had good vison at 12 months corrected with glasses. A couple of years later i needed no sight correction at all for about 5 years or so. Then i had glasses for about six years, now I am back on lenses.

Hope this helps.

[Emma Stevenson]

Thanks for your advice.

Strangely, I see one guy at the hospital for lenses and one for my actual eye (if that makes sense) and I'm not due to see lens guy till march, so I shall speak to him about different lenes then. I have recently (ie last year) changed lenses, but am unsure of what type they are. They go over the iris onto the white of my eye, and are hard in the centre, and blue in the centre too. I plan to ask loads of questions when I go, since I've discovered this website, I feel so much better informed than ever before, and know what to ask now too.

PS: what was the change in your diet that helped your lens wear?


PPS: am I the only one who thinks of C3PO when reading about C3R?

[Sweet]

Emma,

Hi again! Sorry to read that you are having problems with wearing lenses for long periods. When you say that you are seeing two people for your eyes, do you mean that you are seeing a consultant who checks on how the KC is doing and an optometrist who fits the lenses? That is perfectly normal, i have only met one opthalmologist who liked to fit lenses as well.

As Gareth has said there are many different types of lenses. I only wear lenses in one eye and suddenly found that i couldn't cope with them anymore. Five hours of wear and i was in so much pain. I tried a lot more lenses including sclerals and have finally found that piggy backing helps. This is using a plain soft lens with the RGP on top.

Hopefully you can keep trying until you find a lens which works. Grafts are sometimes needed but it is always best to exhaust all other possibilites first.

Take care, Sweet X x X

[Andrew MacLean]

It is normal to see one group of people about lenses in a hospital and another lot about the "eye"

The lenses people are the optometrists and the others are the ophthalmologists. If your hospital is like mine, the optometrists will try their hardest to keep you away from the knife as long as possible, the others will stand in reserve until the optopmetrists have come to the end of the road.

As Gareth says, there are loads of different lenses, and loads of different lens materials. That phase of the management of your condition is not over until all options have been exhausted.

If the time does come for you to have a graft, this is not a cure for KC. It is just another way to manage the condition, but unlike earlier stages, this one is kind of irreversible.

All the best

Andrew

[GarethB]

The main dietry change was what I drank. Instead of coffee or canned drinks, I have changed to 2 cups decaff per day and drink at least 2 litres of water every day too.

More of my food is unprocessed, reduced the crisps and salt intake. In advertantly, by choosing less processed food, these retain more vitamins and my Vit B12 has rocketed which is now far higher than the recomended daily amount. My KC is now stable, but how much is due to diet is very hard to say, but Vit B12 is what is used in C3R with a co-enzyme activated by UV light to start the cross linking process.

I eat more fruit than I used too, I feel less tierd, my weight is up where it should be. In the past I had a weight problem where it was consedrd dangerously low, in 2004 I was down at 7 1/2 stone, I have been stable at 1 stone since mid 2005!

I must stress though, diet was not the only thing, this had been changing before I found the right eye drops, it helped, but eye drops helped I think in equal measure.

[piper]

emma, advice is iasy to give......but here is a bit. See another specialist, not because you don't trust the first one, but just because human knowledge and experience is not perfect, and two heads are better than one. As noted above, sclerals could be your best bet, as they were for me. When the time comes for a Graft, it should be because NO lenses work for you.

Patience, patience, patience.....

Piper