Clueless newcomer!!

[Neil H]

Andrew

When i was first diagnosed the hospital i was going to was Furness General in Barrow-in-Furness and since i went to uni in Sheffield in 1995 it has been The Royal Hallamshire.

Furness General didn't organise my contact lenses which was left to my optician. i was given standard RGP's which really weren't that great. The Royal Hallamshire is completely differant. I have specific KC lenses now which are far better. The hospital staff have noticed a significant imrovement in the condition of my eyes since i started with them in 1995 which is great for me. i guess thats the differance the size of department makes.

Neil

[samuel]

Neil

Thats my biggest worry - badly fitting lenses that will make more problems!
How much has your KC progressed in the 20 years you have had it?
Is it differnt for everyone's KC to proggress at different rates?
As im only 22 is this the time for KC to really start getting worse?
Im sure these questions are a bit akward as everone is different ..but is there a pattern?
I have my first fitting this Saturday One week after it was diagnosed.

Thank you so much for the people that gave me this great information its so helpful

[Andrew MacLean]

Samuel

The simple answer to your question is that "it varies", but it is worth saying that people who show clinical signs of keratoconus while they are young are likely to see the condition progress. It is also worth saying, however, that progress with KC does tend to be self-limiting, so that even if your condition progresses while you are 22, there is no reason to conclude that it will not stabilize by the time you are 25 or 30.

Sorry the news is not more definite.

Andrew

[GarethB]

Samuel,

My KC has been stabe for 3 years now. Most people cope with just glasses or contact lenses.

Most who post here are the more extreme cases of KC although the balance is slowly changing.

When you have your lenses fitted, give us much feedback to the optom as possible, be very desriptive, it goes a long way to helping them understand vision and comfort.

Just because lens fit looks good to an optom does not mean you have good vision and the lens is comfortable. Thes can all be resolved in most cases, but you hav eto give a lot of input. It also takes time to get used to lenses, so keep a diary between appointments to help with any refinements to the lens fit that may be needed.

Plus once you ahve your lenses, if you have any concerns contact the clinic rather than post here and sit in complete discomfort waiting for advice which is only based on our experiences.

[Lynn White]

Samuel!

Welcome to the boards. I am an optometrist myself, so please feel free to ask me anything you want.

It sounds like the optometrist you are seeing currently does actually know about keratoconus and is trying to help you as much as possible. Firstly, If you are thinking of going to the hospital through your GP, then tell your optician as soon as possible so he can cancel your lenses, or put them on hold while you discuss the situation. It is only fair!

Secondly, a referral to the hospital through your GP will go much more smoothly if your optician sends a referral letter to him/her.

Thirdly, although people here have posted positively about hospitals, you need to understand that hospital services vary around the country and you do need to check out that the hospital you may be referred to does actually fit keratoconics.

Another issue is that although hospital fitting is excellent and they do have a wide range of lenses, there is inevitably a delay in fitting which can add up to months. This is often where a High Street fitting can help becasue they can get you seeing in lenses much more quickly.

It sounds to me like you really need to go back to your optician and ask to discuss what you have been finding out with him.

In general terms, what the others have said about Keratoconus changing quickly is all correct. Spectacles do not fully correct keratoconus because the shape of your eye is uneven and wearing contact lenses helps because they even this out. There is a lot to learn about the condition - but you do also need the advice of the optician who has actually seen your eyes. That is the person best placed to discuss this with you.

Lynn

[Neil H]

Samuel

As people have already said the progression of KC vaires alot.

My left eye started when i was about 11 and the right eye started a couple of years later. It's been a gradual progression of getting worse until i had a partial graft in my right eye 2 years ago. My right eye started later but at the point of having the graft was worse than my left.

I have contact lens appointments at least once a year and i've needed a new lens for atleast one eye almost everytime i've been. I went again a few weeks ago and last week my latest lens arrived in the post. I'm resigned to the fact that my left is eye is still getting worse and that a graft will almost certianly be needed. However i managed for about 18 years with contact lenses before my first graft was needed. It's not all bad aslong as you can cope with contacts. Hopefully it'll never get to the graft stages for you.

Let us know how the fitting went.

Neil

[GarethB]

Samuel,

There are many posts about the iveitability of needing a graft. From being involved in the suport group and the presentations I have seen at group meetings, AGM and our confrences is that 90% of those with KC never get to the point where a graft is necessary.

[samuel]

HI! everyone!!

I have just got in from having the fitting!!
I think it when really well and my opto was really pleased with the way i took to the lenses.
But they are not quite right yet they need to be flatter and they both need to be stronger.
but it was not far off.
it took about ten minutes before i couldnt feel the right lens and i could still slightly feel the left one all the time,
my eyes were watering but not as much as the opto was expecting.
Then came the yellow dye that was quite a strange (not uncomfortable experiance) but it was fun watching everthing go a funny colour.
The opto put the lenses in and i took them out pinching the eyelids in a most clumsy fashion (thats going to take some getting used to)

As for the progression of KC thank you for the input everyone i thought i might have been one of those things that i will just have
to monitor as life goes on. (same as everthing in life really)

So i have a another fitting hopefully this coming sat 20/10/07

Lynn White
I'm not sure about the seeing my GP if everthing goes well will i need to?? is it necessary??
Can i do all the treatment with my opto??

thanx!
Sam

[GarethB]

Samuel,

Sounds like you have a real good optom there, so I am sure if they felt a need for you to go to your GP for a hospital referal, they would have said.

Lynn will be able to clarify this.

It is quite common for us to have a coupe of lens fittings to get it right, the fitting is much an art as a science.

Some of the lens trials I have been involved with theoretical should have worked last time round, but with the experience of a fitter we can see what needs to change to make things work.

Happy to hear the fitting went well, good luck for the next visit.

Gareth

[Neil H]

Samuel

Glad to hear things went well. Fitting lenses can take time to get right. Getting the vision right is quicker than getting them to fit your eye well.

As for if you need to see your GP about a referal to hosipltal. I'd talked to your optician about it. It may be that he thinks it's not worth it at the moment. I guess the hospital really comes into it when things get worse and other options are considered. Just talk to your optician. He may think it's worth getting a hospital appointment so that they can have a look and assess things. It can't hurt to have another person look at your eyes and give their opinions.

Neil