Just been diagnosed

[Dom]

Wow! Just been reading through this forum! For KC to have its own self help group makes me think this condition I have is more serious than I thought!

I know my eyes haven't been right for a long time, then eventually I closed my good eye and couldn't see a whole lot in the other. I just got back from the optician and she has referred me to the hospital. I only just remebered what she called it "keratoconus". My vision hasn't been too bad, sometimes it just felt a bit blurry like when your drunk. I know I have had this for a while but it has only just dawned on me that I have a problem. I guess I'm lucky its only in one eye they said the other was fine.

I guess my condition isn't so bad because it doesn't really bother me, can't read anything in my left eye but with both open its not too bad. I'm not liking the sound of the treatment, painful uncomfortable rpg lenses, worst cases transplants. I always thought I would never be able to wear contact lenses Im not so good with eyes.

I guess I have to wait and see what the consultant says at the hospital.

Will let ya know how it goes!!!

[jayuk]

Hello Mate

Guess Welcome to the forum.....

Indeed the meeting with the consultant will be good and thats were hell go through the options....but you are correct in assuming the most likely solution right now will be lenses of some sort...may even be glasses depending on how serious the KC is....

Keep us posted mate

Jay

[GarethB]

Depending on the severity of your KC as Jakuk says lenses might not be needed. Lens technology has moved on and I will admit to having a phobia of eyes, but when RGP's are the next step it is amazing what you can achiev with positive thought.

It is not natural to put thingsin your eye and I would be lying if I said there would be no discomfort, but in many cases that is all it is. You will be surprised at how well the eye can adapt, you start off slowly wearing the lenses and as the eye adapts you build up the wear time. The percentage of KC sufferers needing surgery is quite low and is always as a last resort.

Browse this forum and the rest of this site and make a big list of questions to ask and it is always useful to take a friend to make notes of what happens when you first see the consultant. This helps with information overload and thinking what happend. You at least have a record of what was dicussed and what the next steps are.

We are all here to share our experiences so feel free to ask any questions here and let us know how you get on.

Gareth

[Sophie Bull]

Hi Dom, well I think Keratoconus makes us special..your one in a smallish number!! Its good that you found the forum so early on its a good place to air some feelings and get some feed back from an interesting range of people. Dont worry too much about all the posts, I do find when im having a not so great day I have a tendency to go through posts and as people posting can be experiencing problems they can be weighted on the negative side and Im not sure its always that helpful a thing to do! but at the same time its nice to know your not alone and theres always someone to listen.

You dont say how old you are, but if your still at school or college maybe the leaflet attached to the main page would be helpful to pass on to people although you may be far off needing any such stuff.

On the up side, I was diagnosed at 16 and it is only in the last couple of years that things have got more difficult (im 22 now). If you get contacts dont expect to be a natural, but the get person who fits them to properly go through things and you will get the hang of it..i promise!

Good luck
Soph

[Paul Morgan]

Dom

Yep, I have huge sympathy with you and know exactly what you mean.

Sometimes ignorance is bliss. I thought I had dodgy eyesight until I started doing a bit of reading...now I know more about KC I simply know what MIGHT happen rather than what will. The truth is your KC is likely to progress a little but be perfectly manageable with specs or lenses. It may get a little worse than that but statistically that's unlikely.

I also recognise your good eye, bad eye comment. My left is MUCH worse than my right so I know how disturbing that can be.

On the positive side Im was diagnosed at about the age of 22. I'm 35 now and have only just started using lenses...

It ain't all bad you know.

[GarethB]

One thing I we do not make people aware of is that the KC can settle.

Get diagnosed, fitted with glasses or lenses and that is it. KC does not change for quite sometime.

In the early days my KC changed at such a rate, I would have new lenses every 4 weeks. Now 18 years on and 2 grafts later as mentioned before, grafts are not actually that common in KC! The cornea the graft is attached to has progressed in the KC dept, and this is extremely rare! It came on quickly, but has ben stabele for 6 months now.

To put things in perspective, at one of the KC confrences it was suggested that the more difficult cases (sorry, could not thing of a better phrase) contact the support group. As the range of people here are more diverse and that goes for the membership, it would be interesting to see what a new survey would show. Would a new survey be more representative of the KC population as a whole?

Gareth

[Dom]

Thanks for everyones replys and words of advise.

Im 29 years old not sure if thats strange for it to start at my age or not?

The picture on the KC description page looks very scary, I take it that's an extreme case? Or are people here looking like that?

I guess there are many different levels of severity of KC and so far if mine was to stay as it is then I could quite happily live with it without treatment. I would guess I have noticed something was up for 6-9 months before having my eye test yesterday. I guess I will have to wait and see how it develops.

[Dom]

Well a stage further. I had to see my doctor for no particular reason they didn't examine me but anyway I got referred to the hospital where I had an eye drop and looked at through some machine, he didn't really say what he was doing. He said that at my age if it is KC then its going to be a very mild form if not a very bad stigmatism. So 3 more appointments, this thursday is at Harley Street for a Topography, then to sutton eye unit for either glasses or contacts then back to the eye guy. Will let you know how it goes

[GarethB]

Topogrophy and a good specialist will definitly be able to say if you have bad astigmatism or mild KC. Lets hope it is the former as it is a lot easier to live with.

Good luck.

[Dom]

I found my post from 6 years ago. Here is an update:

I got a lens fitted the doc says, your right eye is fine so if you don't get on with the lens after 2 weeks then leave it your eyes won't get any worse. This is what happened, after spending hours just trying to get it in then in pain once it was there I gave up. I was given no follow up appointments.

6 years later on and I'm getting blurry vision in my right eye. I went for an eye test and diagnosed with KC in my right eye, this has devistated me somewhat knowing how useless my left eye is (I couldn't see the screen let alone the massive letter T on it, she wrote left eye "Can see fingers"). The optician advised me to stop driving and wrote my GP a letter to get an urgent referral. My GP wrote a letter to the hospital and I haven't heard anything for 2 weeks. I don't trust the information I was given at the hospital last time, things have got significantly worse. I want to go private and get things sorted quickly as possible but not sure of the best course of action.

I spoke to Accusvision who say they can work to stablize it, then look to reshape the cornea and try to improve vision, they said there are only 6 clinics in the world that offer this treatment. He said the hospital will treat the symtoms but won't stabilze or improve, he said the quicker you respond the more options you have. Initial consultation £150. Up to £2.5-3k per eye for treatment. That was a shock. My family said they would help me financially but also told me to book a consulation with a hospital specialist to get an independant opinion and see if they offer similar treatment. I think this consultation will cost £120-180.

So do you think this is the best way forward?