Advice needed

[aimlette]

Hi, I'm new to the forum and this is my first post. I'm just wondering if anyone out there can tell me whether my experience with KC is 'normal'...just feeling a bit alone with this really.

I was diagnosed with KC in the summer of last year after being referred to my local hospital eye clinic and at the moment am still using glasses - not because my KC is at a stage where I can (my vision is ropey and I get lots of headaches), but more because, after eight visits to the hospital, I still can't get lenses to work for me. I've tried 6 or so different RGPs, they all 'fit' apparently, but I can neither see anything in them, nor tolerate them in my eyes (I go cross-eyed, can't focus, tears streaming down my face). They then tried me with 'special' soft lenses, but I don't know what they are other than they're springy and large (10p piece-size). The fitting pair was fine, and they ordered them in my prescription. They arrived, and I was optomistic they would work for me. But I can't see in them! They sent me away with them to try (no case or solutions as they'd run out) and I've tried and I can't read in them, I can't see a computer screen. Can you really learn to 'see'? Everything is blurry and I feel sick and dizzy. I'm concerned because I'm back at the hospital tomorrow for my nineth visit and last time they said if I couldn't get used to these they don't know what else to try.

I don't want to rush towards surgery yet, not least because after reading lots of posts on here I now think there's lots more lens options left to try...but I don't think my hospital knows what to do now. Neither do I. I'm a proofreader by trade and starting to really struggle with my sight in glas ses.

Does anyone have any thoughts or advice?

[GarethB]

Hi Aimlette

Welcome to the forum.

You are not alone and lenses are hard for us.

Regarding RGP's there are many that come under that categrory, Toric, RoseK, RoseK II and it often takes three or more visits to get a lens right.

There are combinations too, such a piggy back where you wear a plane soft lens and the rgp sits on top. The soft lens prevents the rgp moving about so much so less eye irritation. There are also soft perms which is an RGP and a soft skirt round the edge which also help reduce the lens movement.

I tried the soft lenses for KC and had the same experience as you which was complicated by the fact I have had 2 grafts. The fitting I got perfect 6/6 but when they arrived they were not sitting where they should. Like you I was sent away so I could get used to them. Never got as far as trying a new set due to another problem.

The lens in my right eye is not the ideal fit from a fitting perspective, but is the most comfortable and gives good vision so there is a compromise to be had.

At you next visit ask for your eyes to be tested for dryness as this can cause problems and KC people are quite prone to it. You may not feel you have dry eyes, one symptom is running eyes! Afetr 12 months lens wear I suddently could not tolerate lenses for more than an hour or two and that was uncomfortable.

After finding that I did have dry eyes, I was lacking the surfactant component that lets a fatty comonent of the tears that acts as a lubricant beinf distributed by the water component of tears.

Now I use lubricating eye drops, plus I drink more water (at least 2 litres per day) and have cut out juice, fizzy drinks and lots of caffeine. Now I get really good lens wear for a regular 12 hours and this has been the case for 12 months now.

There are plenty more lens options to try and to some extent depends on the skill of the optom fitting the lenses and their experience with different lens types.

Hang in there, it is frustrating, but the call us patience for a reason.

[aimlette]

Thanks Gareth, it's comforting to hear that repeated trips to the hospital aren't uncommon in getting lenses fitted. I'll put these different ideas to them tomorrow, I'd also heard about scleral lenses - feel odd telling the optoms what to try, but I'll give it a go. If they can't try other lenses, do you know how I go about going somewhere else? Do I have to get a referral from my doctor? My KC was picked up at an Asda opticians - but they aren't in a position to fit me with lenses.

Thank you

[Andrew MacLean]

aimlette

Welcome to the forum! Gareth is right about all he says. The best advice is



You may take a bit of time to find the lens that is right for you, but there are lots and lots out there!

Andrew

[GarethB]

Aimlette,

Your optician may well be unaware of all the lens types due to size of the unit or their expereince. It is equally possible they refer to lenses y a generic term for fear of causing undue fear and concern to the patient. Some people go with what they are used too.

Stick with your current hospital for a while longer, but should you need further help, they should be able to refer you to another eye unit.

The eye unit I go to is quite large, but if they could not help, then the next one would be the Birmingham Eye Hospital.

Just noticed you are a proof reader, are you self employed or employed by someone?

If you employed by someone, you do haverights under the disability at work act. Employers are obliged to make reasonable adjustments and this might mean magnification software and larger screen to see documents. I know a couple of school teachers with KC wo have a CCTV camera linked to their pc so they can read students work better. Work place assesments can be provided by Occupational Health if you have one, RNIB or Action for the Blind.

[Matthew_]

Aimlette,
Good luck. The thing is to hang on in there if you can. I know its frustrating when a solution seems so close and yet so far.

[aimlette]

Thanks for all your advice. Just got back from the hospital, where I was referred back to the consultant. I was told 'piggy-backing' wouldn't work for me because I was unable to tolerate RGPs so wouldn't get on with that (that made sense), the soft-on-the-outside-hard-in-the-middle type aren't 'any good' and sclarel lenses wouldn't work for me as the problem is not fit but getting useable vision.

So back again in two weeks time to the consultant and if he wants the optoms to try scleral lenses then they will, but otherwise not.

Might be time to get referred somewhere else now I suppose...don't really want to go down a surgical route yet, which was suggested today, when my KC is comparatively moderate. I have worn standard lenses before KC, so don't really understand why, when they fit, the Kerasoft lenses don't allow me to see ok.

Trying to be patient...

[Pat A]

Hi
This might ne worth a shot if you can tolerate soft lenses OK - my local optician tried this for me and it worked for a while - special soft lenses with NO power in them (I don't know whether you are short sighted or not, and if so by how much) - this helps with the KC type multiple images and blurriness, but then wear glasses of appropraite strength over the top for distance/reading or whatever.

Just a suggestion...cos anything is worth a try!

[Andrew MacLean]

aimlette

I have read and re-read you rpost about the sorts of lenses that are "not suitable" for you, but I still cannot make sense of it.

Who told you all this? If it was a High Street Optician, then it may be that (s)he is just not experienced at fitting KC eyes.

Did they try you with piggy back lenses or sclerals?

Andrew

[aimlette]

Sorry if I'm not making sense. I'm pretty confused too. I'm being fitted by a hospital optom.

I've tried multiple pairs of RGPs - all were excruitiating, none of them gave me good vision, but all of them 'fit'.

They then tried what I now know to be Kerasoft. I tried clear with glasses on and got pretty good vision. They were ordered in a prescription (I'm short-sighted) but when they came I couldn't see anything. They too fit. I was sent away for three weeks to try them, but still couldn't see at all well (couldn't read, look at a monitor, drive).

Then today when I went back, I suggested the other three options I'd learnt about here:

Piggy-backing - they concluded it would be pointless as I'd been unable to tolerate RGPs and they would be on top and my eyelid would still rub and be painful. And if I couldn't see with RGPs I wouldn't see with them.

Soft/hard - "they're not very good"

Sclerals - very big (which I knew), if I didn't get on with RGPs then unlikely to get on with these because fitting is not the problem, vision is.

So that's where I am today - no further on than 9 months ago. Is all this true about the lenses? I really don't understand how lenses can fit but I can't see.