Just been told I have this condition- Great!

[justin]

I live in Slovakia although I am British- it's a long story. When I was in the UK I had an eye test as I needed new glasses for driving and TV I was told I had a stigmatism in one eye. After moving to Slovakia last year I got another eye test and was told I had a stigmatism in both eyes! (before Christmas 2004)

Yesterday I went for test as I had heard about laser treatment and thought it would cure the stigmatism. After he tested me (he spoke semi good English) he told me I may need two cornea translpants but may need to try hard contacts. This blew me away and I felt very low and sick with worry. To make matters worse, I have alergies and if I get cat hair or any animal hair into my eyes they itch and blow up (we have two cats). So as you can see I am very worried.

Any advice or tips you can give me?

Thanks. Justin

[madmish]

hi justin. i am new to the forum and KC too. although i cannot offer you any advice i can tell you that coming onto this forum has helped me to understand more and everyone is really supportive on here. i am sure someone here will help you and give you the advice you need. to be honest i don't know how i'd cope without the advice and comments from the others..thanks guys!!

[jayuk]

Hi Justin

Guess you have come to the write place!

Firstly sorry to hear you hae this condition............but rest assured theres a wealth of knowledge and experience here so help deal with it....


With regards to your experience with your specialist.....you have experienced your first bout of "Lack of KC understanding" from the consultant.

I would suspect, and I emphsise SUSPECT, that at the stage you are at you DONT need transplants..........but yet again to be 100% certain youd need to be examined by a knowledgeable and inormed Opthamologist. Howeevr if you can see with glasses / lenses in the 6/6,6/9 or even 6/12 and the coning/scarring is not bad that rest assured you are more than likely in a better position.

Part of coping with KC is understanding what it is and the options you have. The taxing element of KC is the " Good day Bady Dday" eye periods. But again, I hope you are many years away from this position.

Be good to get some info on how good your vision is before any lens correction and with as that may help all of us with giving you more info

[John Smith]

Hello Justin, and welcome to the forum.

Did the laser surgeon specifically mention keratoconus? I'm not sure what else the symptoms sound like, but then - I'm not an expert!

Assuming that you have KC, the first thing to learn is that you shouldn't panic. Sure, there is a chance that you will need a transplant, but the odds are that it won't come to that.

In the short term, if you weren't particularly aware of having very poor, uncorrectable vision you're a long way from the surgeon's knife, if at all.

In your position, I would certainly try out Rigid Gas Permeable (RGP, aka "hard") contact lenses. These can be uncomfortable though, especially if your eyes are sensitive. But you can get other options, "softperm" or sclerals. Check out the main site for more details, and be sure to come back here and tell us how you've got on.

[Lynn White]

Justin....

For a start, please be aware laser surgeons are currently very worried about operating on eyes that show any sign of keratoconus as there have been cases where they have unwittingly triggered KC with laser surgery.

What I am getting at here is that you may only have mild signs of KC - and that as Jayuk says - the specialist was insensitive - probably because of his lack of English.

I suspect you can't be that bad because you would have noticed your vision being really awful if you were! Transplant is really the last resort adfter all other therapies do not work - so I would try and get a second opinion from a general ophthalmologist if you can.

Do keep in touch!

Lynn

[GarethB]

Justin,

I do not know how good treatment for KC or even knowledge on the subject is over there, but I hear that in Germany it is understood as well there as it is here. Most of the doctors I have encountered there speak very good english so language barrier problems may be minimal.

I have also heard that there is a German KC forum like this so I will ask my wife to look for me tonight otherwise I will ask my mother in-law for help as she is German too. It might be easier to go there than hike all the way back over to the UK.

It does however sound like your KC is extremely mild and the Slovac doctors comments would be quite right if they were made here about 20 years or so ago. However it might have been his English and/or lack of knowledge of the condition
that set the alarm bells ringing.

Only a small percentage of KC sufferers need a graft.

Hope this helps

Gareth
Regards

Gareth

[John Smith]

One thing to bear in mind - Scleral lenses are unlikely to be available in Germany - I understand that they're pretty much unheard of outside the UK, Holland or Sweden (with occasional and notable exceptions).

Of course, with very mild KC, it may be unlikely that sclerals would be used for you; but it's always worth keeping your options open...

[Carol Vines]

hi Justin i'm new to this forum although not new to having KC, been diagnosed 25 years now.

hope you have found out exactly whether you have got KC or not by now but please don't despair if you have got it, you do learn to live with it, honestly!

i have changed opticians over the years when i have felt they are no longer any help to me, so if your not happy with the advise your have been given try ringing round a few others and explain your situation.

i am totally dependent on RGP lenses, got cornea scarring through the years of wearing them, i have good days and really bad days, i've found being able to talk to others has helped , up until 3 years ago i knew nobody else that suffered with it, so this group has been a real god send for me and i hope for you as well. keep us informed on how your doing.