My Story & Problem's with RGP

[Steve Richardson]

Hi all,

Just found this site and glad to know I'm not the only one with Keratoconus around here!

After years of what I considered bad vision with glasses (although my opticians seemed to think it was ok!), I change optician and it was immediately recognized I had Keratoconus. So off to the hospital for me.

It's been over 1 1/2 years since I've been seeing the Ophthalmologist at my local hospital and it has seemed like a very long road. At a couple of pints I've had 2 lenses I could where but either 1, or both of them have been uncomfortable and I've not been able to wear them all day at all. This is a big problem when the glasses I have are so way off in their prescription now that I can't wear those instead. Without my lenses I don't think I should drive and I am a window cleaner so really need to be able to drive around.

Basically I am now at the stage where I have an RGP lens I can wear on my left eye all day with no problems (I can still feel it but it doesn't cause discomfort anymore). As for the right eye, that's a different matter. I have had about 5 I think, different fittings for my right eye lens and it just doesn't fit correctly. My current lens is the best I've had it for a long time, but after "wearing it in" for a few weeks I can still feel it all day and am only managing to wear it for around a morning at a time, but the morning is hell as my eye is constantly sore!!

I've just spoken to my Ophthalmologist and he mentioned that maybe my right eye won't "take" to a lens now...great

What is strange to me is that my left eye has ALWAYS been the eye with really bad vision, from glasses wear onwards till now. The eye guy (quicker than writing Ophthalmologist every time) has told me that my left eye has Keratoconus worse than my right eye...so...why can't he get a lens to fit my right eye correctly?

I really hope he doesn't give up trying to get one to fit although I think it's heading that way. He has made a few comments in the past how many people with this condition get by with only 1 lens etc etc, but to be honest, my vision isn't great at all with only 1 lens. I don't understand why my really bad left eye can get a lens ok and improve my vision from only being able to read the 2nd or 3rd line on the eye chart down to almost the bottom, whereas my no-so-bad right eye is such a problem and I've never had a lens that improves the vision in it much at all....

I've been getting a bit down today about it after the phone call with the eye guy, which the soonest he can see me is bloomin middle of November so got a long wait as usual...then the 2 week+ wait for the new lens...then the 2 week "wearing it in! period...then the realization that this one doesn't fit either and is no good...then the 2 month wait for another appointment....yes it's been like this for about a year.

Anyway, wanted to share. Any advice you guys can give me on what I can say and/or do at my next appointment would be most appreciated.

Cheers guys
Steve

[GarethB]

Steve,

This time last year I was having a real problem with lens comfort. To cut along story short, after at least 2 hospital visits per month for six months I asked if there were eye drops I could use.

Well I found systane was best and I also made sure I drank more water and reduced the other drinks. Took more frequent breaks from the PC, ever 30 minutes have a 5 minute break. After a month the lens wear had gone from a max of two hours upto 8. For six months now I regulary achieve a minimum of 12 hours comfortable lens wear with the lens I was originally fitted with 2 years ago.

It might be that you have to ask and investigate other factors that can combine to make the lens uncomfortable in addition to the lens fit. Subtle changes in all areas can soemtimes have a more significant benifit than a single major change in one area.

Then there is the other types of RGP lenses or RGP lens combinations such as piggback lenses, sclerals etc.

Hope this helps.

[Steve Richardson]

Hi, thanks for the reply. I do have Systane which my eye guy swears by! It may be that I need to give the lens a better go before I give up with it.

Thanks for the advice, I will have a chat with him about what else he suggests I can do to improve my chances of the lens taking to my eye ok.

Cheers
Steve

[James Colclough]

If you are having real discomfort with the rgp ask about piggy backing.

I have been doing this July, although today was hell as I ran out of dailies although a local optician came to the rescue.

The soft lens acts as a cushion, so you don't feel the rgp, just a suggestion.

Good luck

[BusyLizzy]

Hello Steve,
Welcome!

You didn't mention which hospital you're being seen at, or how old you are.
It's always interesting to know how old people are when they either first began having KC problems, and the age when they were diagnosed.
You will find that you will probably try several lenses before settling on one that "suits", unless you are very lucky and manage to strike gold with the first one you are given.
How well you take to RGPs depends on several factors such as the state of the cornea (some KC corneas are more irregular than other...it's rarely a case of it simply being more "rugby ball shaped" or conical as the name of the condition suggests), allergies, hayfever, eczema etc.

Some folk with KC such as myself also have concurrent atopic conditions such as eczema, atopic conjunctivitis and allergies to dust mites, mould, pollens and various drugs etc. These can come into play where lens tolerance or tolerance of contact lens solutions is an issue.

Going down the NHS route is way more sensible than going privately. NHS hospitals will make the lenses and only charge you £40 per lens, whereas it will cost a fortune for privately made custom lenses.

My vision is 6/24 in my right eye with no lens, and the best vision I get with a lens is 6/14.
I've tried a lens for my left eye but I have so much difficulty with lens tolerance, that I'm happier to stick with glasses to correct the left eye, with plain glass for the right. I guess they also protect the eyes from allergens, too.

If you are going to use Systane, try to get it in inidividual containers, not the bottle. The individual containers have no preservative in them, so they are less likely to irritate the eye.
There is also something called Hyco-San which is preservative free in a large bottle. That might be worth a try.

Occasionally I use Celluvisc because it is thicker and cushions the cornea from the lens. You can drop a tiny bit into the lens before inserting it.

Best of luck.

[Steve Richardson]

You didn't mention which hospital you're being seen at, or how old you are.

So I didn't! I am 30 now and was first sent to the hospital about my KC about 1 1/2 years ago. I go to the Shrewsbury Hospital and see a guy that is only there every Thursday (annoyingly!).

It's always interesting to know how old people are when they either first began having KC problems,

I have had the symptoms that I now recognize as KC related for a very long time, but my old optician missed it entirely. I could never understand why, having just received a new pair of glasses with a new prescription, that within months (sometimes weeks) it was as if the prescription was just wrong for me. Now I know why.

You will find that you will probably try several lenses before settling on one that "suits", unless you are very lucky and manage to strike gold with the first one you are given.

I have been through about 4 or 5 for my left eye which has now been sorted I think, even though at first my eye guy told me my left eye was chaning a lot more than the right. I must have had 7 or 8 or more for my right eye and am still having fitting problems. I'm just concerned that he doesn't give up on trying to get one to fit it. I just keep coming back to the thought that if he can get one to fit and work very well in my really bad left eye, why not my not-so-bad right eye?

How well you take to RGPs depends on several factors such as the state of the cornea (some KC corneas are more irregular than other...it's rarely a case of it simply being more "rugby ball shaped" or conical as the name of the condition suggests), allergies, hayfever, eczema etc.

I do actually have hayfever and mild allergies, although this year wasn't really that bad and to be honest it doesn't really effect my eyes too much. I did stop taking my usual hayfever tables this year as my eye guy told me that they can dry out your eyes, which is something I really didn't want whilst trying to get well fitting RPG's! I also have asthma and regularly take Salbutamol, I'm not sure if that can affect my eyes in any way?

Going down the NHS route is way more sensible than going privately. NHS hospitals will make the lenses and only charge you £40 per lens, whereas it will cost a fortune for privately made custom lenses.

Why do I pay £50 per lens then?

I've tried a lens for my left eye but I have so much difficulty with lens tolerance, that I'm happier to stick with glasses to correct the left eye, with plain glass for the right. I guess they also protect the eyes from allergens, too.

Wow, now this is something my wife has suggested on many occasions but I wasn't sure if it was done at all. When I used to wear glasses I could get a reasonable prescription for my right eye, I wonder if I still could now? I did ask my eye guy on the last visit about getting glasses as a back up to lenses but he sort of put me off by saying I would probably struggle to get a working prescription...but I may just try and see if I can at least for my right eye.

If you are going to use Systane, try to get it in inidividual containers, not the bottle. The individual containers have no preservative in them, so they are less likely to irritate the eye.
There is also something called Hyco-San which is preservative free in a large bottle. That might be worth a try.

Now sure if we are talking about the same thing? I am using the Systane lubricating eye drops, although I have found the Blink ones from Boots to be ok as well.

Occasionally I use Celluvisc because it is thicker and cushions the cornea from the lens. You can drop a tiny bit into the lens before inserting it.

I've not heard of that, my eye guy only has set solutions & eye drops he sells as he says they are the best. I ahve used Boots own stuff in the past (I am using their cleaning and soaking/wetting solutions at the moment) with no adverse effects to my eyes at all.

I took the plunge today and put my right lens in after not wearing it for about 2 months, and it went in ok, but I can really feel it in my eye and my wife wonders why I am winking at her so much

even with Systane drop they only help for a few moments until they have "washed away".

Thanks for the comments, it is all helpful and nice to know that I'm not the only one struggling with something that most people don't understand unless they have it.

[BusyLizzy]

Systane comes in individual containers OR a bottle.

If your optician doesn't stock it, try:

http://www.postoptics.co.uk. Usually they have it. Or you could try a different optician.

Best of luck!

[GarethB]

Some hospitals do charge £50 per lens on the NHS which is what I paid 2 years ago, fortunaty I have not needed to replace them and you nly pay for what you leave the hospital with, so the dozen that did not work, I never paid for

Other medication can affect lens tolerance, I found Diclophenac pain killers dried my corne just enough that my lens would not sit right. It took a week for the effect to take place, but once I stopped the painkillers (as they did nothing for my eye despite helping a neck injury), a couple days later my lens comfort was fine and the lens was in the correct position.

[Steve Richardson]

Yeah, I've only had to pay a couple of time when the eye guy told me that the reason for the needed change in lens on that particular occasion was to do with my KC, not the process of getting a lens to fit.

For instance, I think this was because I had a lens that fit my left eye ok for quiet a while, then he said my eye had changed shape so needed a new lens, hence it was down to KC. Whereas all the lenses I've had for my right eye have never felt right and been down to getting the fit right. So glad I haven't paid £50 for each of those as I would have given up ages ago!

Going to try a few of the suggestions here and on the rest of the forum to see if I can improve anything to help the fit of the right lens I am really struggling with at the mo. Drinking more water already