UK Keratoconus Self-Help and Support Association

Hello,
This is my first time on here, so not really sure what to expect..!

I'm 26 and was diagnosed with KC 10 years ago. I've been coping "ok" up until this year. I wear gas perm contact lenses which I get from my local NHS hospital, from the contact lens specialist there. The lenses I have currently are only 4 months old and have not felt quite right since I ahd them in April. I have been back to the hospital 4 times over the last 4 months, and each time I go there are a new set of lenses waiting for me. The consultant tests my sight with them in my eyes, however, each time my vision "up to much". Increasingly, I'm feeling that this is down to me - although rationally, I know I cannot help the condition I have!!

I've been back to the hospital today, and again was given another set of lenses to try. However, I could only read the 3rd line down on the letters board. I could sense that the consultant was getting frustrated with me - he says that he doesn't seem to be getting very far with me! As you can probably imagine, I am feeling quite frustrated, as we all know what it feels like to a) wear uncomfortable lenses and b) have unclear vision (both of which I am currently suffering from!). Today, he pointed out to me where on the letters board I could read last month, and it was a lot smaller than what I was getting today. He said (quote) that "it is a mystery". However, am I right in thinking that KC can cause vision to fluctuate from time to time? Surely he should understand this??

I was wondering if there is anyone reading this who has a similar problem? Is there anywhere else I can go to for a second opinion, or is the NHS the final port of call for KC suffers? After today, I feel as though there is never going to be an end to the discomfort I'm feeling, and I feel as though my consultant thinks I'm either lying or wasting his time. I think he maybe losing his patience with me. He is getting me some new lenses, but I'm feeling anxious about going back to him because I feel like a bit of a hinderence to him. Daft, I know, but it's sooo frustrating!!

Thanks for reading this, and any comments are greatly welcomed.

Hi there Amesley, and welcome to the forum.

It sounds like you're seeing an optometrist (like a high street optician), albeit a contact lens specialist.

You should also be under the care of a consultant ophthalmologist (an eye doctor) who can do various tests (including a contour map of the eye) to determine the level of your KC. I would ask to see that consultant assuming you're not seeing them at the moment. Very few consultants fit contact lenses.

It may be that your KC has progressed beyond the stage where RGP lenses are useful; or it could be that you need a more specalised lens, like a "Rose K", or a scleral. You may even be approaching the time where surgery is called for.

Only your ophthalmologist can see your eye and is qualified to talk about it. You should be able to get an appointment through the hospital, or via your GP.

You could also go private if you want to. Each consultation would cost about £70-£100; but you would at least feel "in charge" more.

Hello amesley

Let me add my weldome to the one already extended by the boss!

It sounds a bit like your KC is progressing. This does not necessarily mean that you have arrived at the time when surgery will be inevitble, but John is right that you ought to be in a position to ask your consultant ophthalmologist about options.

Meantime there are loads of different sorts of contact lens that you can try. Your hospital optometrist is well placed to try the full range. I went through the whole gambit of RGP corneal lenses (usually the firts thing they try), I did use a Rose K lens and then moved on through a hybrid lens to kerasoft and then to a scleral.

From this you may gather that I am very old indeed; and so I am.

The main point here is "don't panic"

All the best

Andrew

Amesely

In mid-2005 I had al sorts of lens problems and each new lens we tried did nothing to improve on what I had. So we did a topography to see if there had been any KC progressions and there was none. Yet I could only get an hours lens wear with poor vision.

The problem was eventually put down to poor tear production. Although the test conducted showed my tears to be normal, they were on the lower limit of what was considerd normal. So this and KC having to wear lenses was the problem. We then tried many different lubricating eye drops ebfore finding one that worked. Further improvements came when I significantly reuced the caffeine and fods/drinks containing dieretic ingredients, drinking at leat 2 litres water and eating whole fruit rather than juice drinks and eat foods high in rhiboflavin.

Still on the original lenses I was given three years ago, KC is stable and I get an easy 12 hours plus lens wear. Now use the eye drops jut before putting lenses in and again when I take them out. Was I time I had to use them every couple hours.

Like John says see the opthalmologist for further advice, it might me more than just lenses. General eye health, rest of your health and life style I have found also have an impact on lens wear.

Amesley

Did you make any progress after your initial post?

We really do have you in our thoughts and we all hope that things are moving in the right direction for you.

All the best.

Andrew