What will my future be like?

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al
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Joined: Tue 26 Apr 2005 1:32 pm
Location: Norway

What will my future be like?

Postby al » Tue 26 Apr 2005 1:47 pm

Hey, I am 31 years old (Norwegian) and thought I only was near sighted. Yesterday I went to the eye doctor to check if I could have a LASIK operation. That is when he told me I have KC (which I had never heard about). He said I was in the beginning phase. To me that says nothing, and I am now wondering how fast things go. I guess there are many different oucomes, and is it possible that I can live wiht it without getting much worse, or is it going to be tough? Today I have contactlenses (silicon/O2 permable) and everything seems to very good. But is that just for now, or can it be like this for the rest of my life? The doctor did not tell me much, and I must say I got a shock and did not come of any questions. Everything just scared me, even more when i started to learn about it on the internet. I will be very happy to hear GOOD stories, if that is possible?

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Sajeev
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Postby Sajeev » Tue 26 Apr 2005 2:01 pm

Hello Al...welcome to the board.....there are so many things in KC but not many do's and don't once you get KC...

I am thankful for the adive when i was fist diagnosed...which was not to rub my eye as there was evidence even back then (about 5 years ago) that eye rubbing was bad for the eye...which i was thankful to be told about...

There is not much you can say about the porgression rate as its so unpredictable...it can stop at any time and it can start up again at any times as well...but i did hear that it does stop/settle eventually and you will not go blind (unlike what is said in many places around the net)

I see you have the newer lens for KC...so at least you are up-to-date in that department!

Experiances are so different among patients so one persons experiance can not be really transfered to someone else as a measure of there own KC...however sometimes the experiance can be shared as there is sometimes some over-lap...

Anyway all the best

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John Smith
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Joined: Thu 08 Jan 2004 12:48 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Sidcup, Kent

Postby John Smith » Tue 26 Apr 2005 6:28 pm

Hello Al, and welcome to the forum.

First bit of advice: don't panic. KC is a really odd condition - every sufferer will tell you a different story.

Whilst we could list the various levels of the condition, it's a case of diminishing probabilities, so the odds are that if your KC is only very minor at 31, it could stay that way for the next 50 years.

Of course, it could suddenly "decide" to progress. If it does, the odds are that it will stop progressing again before things become so bad as to need surgery.

I obviously can't comment on the situation in Norway, but you may need to find a doctor who understands KC - not many people have the condition, so not many practitioners have the experience!

Best of luck!
John

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al
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Location: Norway

good to hear

Postby al » Wed 27 Apr 2005 4:03 pm

It is really good to hear that everything doesn't have to be sooo bad. As long I feel fine now (do not feel much in the one eye that has the KC), that makes it easier to at least believe that everything will be OK and I can be more optismistic. (I don not wanna dig my grave by being a pessimist, and that's why such news are good to hear). :)
I know of one doctor here in Norway that seems to know of much about this (does cornea transplantations), luckily he works in my city.However, he was the doctor was to when I wanted to get the LASIK, and he was not good to talk with me as a patient (as I guess many doctors are). I think by communicating to the patient, the doctor has already given (in many cases at least) half the medicine.
Anyway, I guess at least the Scandinavian countries should cooperate better on this, as the population becomes larger. It feels good to know of other doctors as well, and they should not be too far away.

Again thank you! I think this place has already helped me over the shock a lot ;-)

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Lynn White
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Postby Lynn White » Wed 27 Apr 2005 4:37 pm

Al...

If it has only been discovered now at 31 and only when you went for lasik - there there is a good chance that your KC is sub-clinical or at least very mild.

The corneal scans that you have to have for lasik often show up mild keratoconus and often it just means you are not suitable for the surgery.

If you are seeing well with your contact lenses and there is not a problem wearing them - then you may well not have trouble from your KC at all!!

The internet tends to be full of stories where things go wrong - people do not tend to write about when things go OK!

So I would remain optimistic for now most definitely!!

Lynn

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Sweet
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Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

hey!

Postby Sweet » Wed 27 Apr 2005 4:57 pm

Hello there and welcome!

I agree with everything that has been said here. I have worn lenses for the past 12 years and it is going ok. The only problem i have is the waiting for new lenses and i do get pain if i wear them or not. To be honest though i have had it so long now im used to it.

Wish you all the best with these lenses and hope that it doesnt get too bad.

Claire X x X


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