I've known about KC for two days

[Meagan]

Hi everyone,

I'm hoping you can provide the quickest introduction ever to KC...

Went to a consultation to have my eyes lasered on Tuesday night. Having done the tests, I was informed that I have KC in both eyes and therefore couldn't have surgery.

My eyes are myopic - about -2.75 with astigmatism in the left..but they seem to have been pretty stable for the last few years. That being said, I have had real trouble getting a contact lens that will be comfortable and give me good vision - finally have some daily disposables that work, but become uncomfortable. Now I stick mainly to glasses which drives me a little insane at times...

I've got no idea were to go with this now. I'm hoping you guys might be able to offer some advice....

I'm going back to Optimax to see their professor and to talk about Intacs...anyone else have any feedback?

Anyway - glad to see that this support group is around...

[brigid downing]

Hi Meagan

I have not been posting here for very long myself so don't feel qualified to welcome you as such but I will say HELLO and that I am glad that you have found this site so quickly. There are some very knowledgable people here, not me I hasten to add, but others seem to know everything and can answer any question asked - so I figure those of us who are fuddled by all this should just keep asking questions and learn together.

I was diagnosed with KC a few years ago and although I seem to complain about it alot here, in my real world life it is not so bad. Don't get me wrong - i hate it but I do live with it, and mostly I live perfectly normally.

It was scary being diagnosed (mainly because the nurse told me in a very serious voice and I thought she was talking about a terminal illness) since then it has just been an inconvenience more than anything else - another factor to consider in everything I do, but NEVER the most important factor and NEVER who I am.

Brigid

[Knight]

...I'm hoping you can provide the quickest introduction ever to KC...

To paraphrase: "kerataconous (KEHR-a-toh-kohn-nus) KC is a non-inflammatory eye condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. This results in significant visual impairment. The cornea is the clear window of the eye and is responsible for refracting most of the light coming into the eye. Therefore, abnormalities of the cornea severely affect the way we see the world making simple tasks, like driving, watching TV or reading a book difficult.

In its earliest stages, keratoconus causes slight blurring and distortion of vision and increased sensitivity to glare and light. These symptoms usually first appear in the late teens and early twenties. Keratoconus may progress for 10-20 years and then slow in its progression. Each eye may be affected differently.

Eyeglasses or soft contact lenses may be used to correct the mild nearsightedness and astigmatism that is caused in the early stages of keratoconus. As the disorder progresses and the cornea continues to thin and change shape, rigid gas permeable contact lenses can be prescribed to correct vision more adequately. The contact lenses must be carefully fitted, and frequent checkups and lens changes may be needed to achieve and maintain good vision.

Intacs have already been discussed before but the most recent was
here
Page 2...

Which I hope helps point you in the right direction

[Andrew MacLean]

Meagan

It's really good to say hello! Welcome to the forum. And congratulations on having found us so quickly!

Knight has already given the definition. Let me give you the same advice as was found in large friendly letters on the cover of the Hitchhikers Guide to the Galaxy: Don't Panic!

Most people with KC manage to live their whole lives without ever seeing the inside of an ophthalmology theatre! Wear glasses. if the day comes when they are no longer any good, wear the contact lenses. There are loads of different sorts of these, so even if one sort does not suit your eyes, another can be tried.

There is an increasing range of surgical interventions available. The end position, for those who need it, is the option of a corneal graft. I think about ten percent of people with KC have some sort of surgery or another.

Meantime it is good to know you, although I know you'd have preferred not to be told that you had an eye condition of which you had never heard

But then, it could be worse: you could have been told that you had an eye condition of which you had heard!

All the best

Andrew

[GarethB]

The afct you have managed with glasses and soft lenses for so long probably means your KC is stable and almost sub clinical.

It is only the fact the laser centres have to be so careful they have some really advanced instrument that can pick up conditions such as KC so early. I would say you have extremely mild KC and all things being well your vision will stay has it has been for some time for many years to come.

If the soft lenses rae uncomfortable it is probably because they are not reducing the astigmatism effectivly. Soft lenses basically mould to the shape of the eye. A more rigid lens is needed to overcome the irigalarities of the astigmatism caused by KC. I would personally say stick to glasses, but if you want contact lenses, ask your optician about kerasoft lenses. These are a soft lens designed for people with mild KC.

Like aAndrew I am a closet Hitch hikers Guide to the Galaxy fan. The words are very wise and true.

[Prue B]

Now I know why I like it here, hitch hikers fans. My hubby got me the series on dvd for Christmas.
Now Meagan, I agree with the others, glasses are a great option as long as you can manage with them. I found the lens route too difficult and ended up sugical. I tried all lenses I could before this option and managed with glasses as long as I could. For me this meant I had given it my best shot and am comfortable with my choices along the way.
Being told you have cones is scary but it is not terminal. I am a pollyanna and will find a silver lining in everything. I think cones is like a volcano it can have active stages and dormant stages and those dormant stages can last for thousands of years. You will always have cones and that is probably one of the harder issues, that and the constant not knowing, but it is not terminal and the symptoms can be treated, usually successfully.

[Meagan]

Thanks guys...

BTW Prue, I'm a fellow Aussie as well!

[Lynn White]

Meagan...

One thing here...to add to what Gareth said, it is an interesting fact that having a topograph before corneal laser surgery has increasingly thrown up eyes that are risky to operate on because they appear to have a keratoconic pattern. Experience has shown that operating on such eyes can precipitate keratoconus.

This is actually different to actively developing the condition and indeed such people as yourself highlight that KC is much more common than we think! Before laser surgery became so popular, sub-clinical KC would not have been discovered in such numbers.

It is quite probable that your contact lens difficulties are related to your corneal shape - but knowing you have mild KC may help a practitioner get a better fitting lens.

I think what you need to do is get a copy of your topography results and get a second opinion as to what level of KC you have before you start talking intacs etc!

Lynn

[Prue B]

So Meagan what part of Oz? I am from Horsham in Victoria, near where the bushfires seem to have been all year.

[Sweet]

Hello there and welcome!

You have some good replies here so hoping that you are more informed now as to what we have. Hehe a strange group this completely mad at times but sharing a common eye problem, so we are allowed to be silly hehe. KC is not so bad if you know about it and are aware of any treatment available and lenses etc. Also you need to get a good optometrist to fit them as not all have much experience with KC patients.

Hope to see you posting again soon! Sweet X x X

Hope to see