UK Keratoconus Self-Help and Support Association

Hi there, I've looked on this site a few times. I was diagnosed with KC in 1999, after trying to join the RAF - I have it my left eye pretty bad - today they measured it as -6.?? Whatever that means? My right eye has it a little but nothing major. I am looking at contact lenses but the Consultant I was with mentioned that we could look at the next step. I asked what he meant and he said 'graft'. It took me back and I did not really ask any questions - I'd like to focus on the idea of contact lenses. To be honest this is something I have put off. I still drive as I feel my driving is not affected.

Anyway a first post with a question; Does KC get worse over time (I'm 30)?

It is difficult to say as everyone is different and so will their progression of KC. Some keratoconics may stabalise where some may have very aggressive KC and may become very advanced in a short time.

As for a graft I would advise you to leave it as a last resort, as there are many risks with surgery such as rejection/infection etc. Try out contact lenses first. There are many different types of keratoconics from small rgps to larger ones, sclerals, soft perms (hard rgp centre with soft hydrogel surrounding) and also soft lenses for mild KC (such as kerasoft).

I would agree with Asif, delay grafting for as long as possible. Ask your consultant why he's thinking about a graft. The usual indications are; not being able to fit a lens to the cornea due to it's steep curvature, or scarring caused by a Hydrops. Ask him to try lenses first and you should also check your visual acuity for driving with him too. 6/12 is required for driving.

Neil! Welcome to the forum.

Firstly, let me say that you are not alone. I guess that your KC diagnosis put the cap on your RAF application, but I think you said that you were still able to drive without a contact lens. If that is right, then it is a good sign.

Elsewhere on the forum, folk with much more experience than I have given descriptions of the wide range of contact lenses available for KC. They seem to range from Rigid Gas Permeable corneal lenses, through various soft options, hard lenses with soft skirts to Scleral lenses.

Each of us has a different fit, and for each of us who wears or has worn a lens or lenses, there has been a different solution to the question of fitting a lens over the cone in our eyes. Your Optometrist will be able to advise you.

Do you see a Hospital Optometrist, or someone in the Private Sector?

Meantime you will probably continue to see your Ophthalmologist (eye surgeon). (S)he has alread broached the question of a graft and so you know that this possibility lies down the road somewhere.

I used to say that I had no regrets about having delayed surgery until there was absoluterly no choice for me, but I am coming more and more to realize that I ought to have agreed to a graft at an earlier stage. I spent nearly three years with a disability that I probably did not need to acquire.

All water under the bridge now. Think of the issues for you of the surgery, and write down all the questions you want to raise with your surgeon. ... How long is the recovery likely to be ... How many stitches ... How long before they come out ... what is the prognosis for sight if you do or do not agree to surgery ... How long will you be off work. (these at least are some of the questions that I added to my list over the years).

When you are in the consulting room, take out your list and go through the questions one by one.

It may be that at some time you will decide to go ahead with the graft. When that time comes, your decision will be based on the best information available to you at the time.

Meantime, I have always found this a pretty good place to ask questions and risk seeming silly. Be assured that nobody here will ever try to make you feel you have asked a daft question: indeed it has been my experience that folk who think they are asking daft questions are often articulating questions with which others have lived far too long.

I have had a graft in one eye and am waiting for a graft in eye number 2.

All the best

Andrew

PS You will probably see that many of us have included in our signatures entirely spurious titles. For an explanation of this you need to encounter 'Sweet'.

She seems to be from Wales.

It was her idea to start a string inviting us all to apply for jobs within a fantasy workforce of KC sufferers. The forum is a place where serious questions are asked, but it is also a place where folk let down their hair and allow themselves (I ought to say ourselves) to be a bit silly.

Andrew

Hi Niel,

Welcome to the forum, in addition what has been said so far I would like to comment regarding the fact you feel your driving has been unaffected.

PLEASE make sure the optomotrist has made sure you meet the legal requierment as should the worst happen and it is found your sight does not meet this, your insurance will be void.

The question regarding should you declare KC to the DVLA is covered in another post here. Your insurance company will need to know. When I told mine they asked how my sight was corrected and I said contact lenses, they treated me like somone who wears lenses for vanity. Just like people wearing glasses, as long as my sight is corrected while driving I am covered.

The other point is if your sight is sufficient to drive without sight corection, it sounds like there is plenty to be had through lenses before rushing down the route of a graft.

Regards

Gareth

Hehehe monsieur! Are you talking about me again!! LMAO!!! Well the original idea came from Gareth in a post saying that he thought it would be brilliant to work with people from here as we would be able to understand and support each other with KC problems! So in true welsh spirit i thought i'd start a post and see who wanted to join and along came our little workforce!!

Anyway ....

Neil, hello and welcome to the forum! You are welcome to ask whatever you feel you need to, someone will always be able to help you out We are very supporting here and someone has always been where you are and can give you some advice!

On a graft, i would leave it unitl the very last minute as you are probably aware that it is considered as being the last option. This is because it cannot be undone so you need to think carefully on it and make sure that it is the right decision for you.

I would say to try contact lenses first, not many people have a graft straight away, and lenses have helped many people see without the need for surgery. I left my graft until the very last minute. I couldn't tolerate lenses on the eye i had grafted for years and had never had any vision with it. I decided to have a graft only when i had problems with the other eye and couldn't see anymore! So i would recommend trying lenses first and see how you go. It can be a very long process as we are all very different but at least you would satisfy yourself that you had tried.

As for driving as already said, you need to make 6/12 vision, which is roughly five lines down on a chart but you will need to check as all charts are different. This can be in only one eye so if you make this already then you will be fine.

Wishing you the best of luck, and if you need any answers don't hesitate to drop back in and post!!

Sweet X x X

Neil

Was any of this any help?

I see you are a teacher. Are you the sort of teacher who works in a chalky environment, and if so does this impact on the dryness of your eyes?

If so, you ought to mention this when being tested for contact lenses. The situation is not without remedy, but your optometrist would be helped if (s)he knew about your working environment.

All the best

Andrew

Neil

Welcome to the forum!

A question for you; When you spoke to the consultant was he aware or did he ask if you was wearing contacts/glasses?......Did he carry out a topography?.....before alluding to a graft?

J

Re: being a teacher - I am teaching in a secodnary school where I have a whiteboard and an Interactive Whiteboard - I love the technolgy however in the past I had to use the black board and yes my eyes were a bit dry.

I was getting sorted to wear contacts - he did a test mapping my eye - I stared at the little house on the prarie (or something equivilant!) and then he asked whether I wanted Contacts or to go down 'other avenues'. I did not figure what other avenues meant until he mentioned grafting!

I had KC diagnosed in 1999 but it was never a big issue. I am getting contacts because my eyes are beginning to feel the strain.

It sounds silly to say this but many people on this forum are a hell of alot more gend up on this than I feel I should be - I guess I need to read up some more on this.