Can I help anyone out there?

[jayuk]

I think this is fantastic that we have two experienced people here willing t help like this!

Ali, so what are your thoughts on contact lens' where KC management is concerned? What have you found, in your experience, to be the better lens types through the four stages of Keratoconus?

[Ali Akay]

Hi Jayuk
This is a tricky one,I have to be careful not to upset anyone so soon after joining the forum!As a general rule early keratoconics cope well with specs, standard gas perm contacts, or soft torics;for moderate and advanced cones gas perm keratoconus designs and more recently soft keratoconus options can work very well.I sometimes use large diameter gas perms (upto 12.5mm) but I have to confess I do not fit sclerals.Actually I fit scleral cosmetic shells to disfigured eyes but not to keratoconics.The main reason for fitting sclerals,I assume, is for lens stability and comfort which can usually be achieved by other lens types but I am sure it can be useful in rare cases.There are always exceptions with some very mild keratoconics finding specs absolutely useless and other moderate keratoconics coping surprisingly well with specs.It depends on the position of the cone as well as its curvature, and also individual variations.

[jayuk]

Ali

I understand where you are coming from, but I think as long as you are not pushing a particular lens for a financial / personal gain anything you say will be welcomed...from me at least anyway; I cant speak for others.

I agree with you on the sclerals....they are an option, but when you get to the advanced stage there not so good for Visual Acuity; which is what I have found. But they sure cant be beaten for comfort when compared against other RGP's in my opinion. I had used Sclerals for about 2 years when I had medium/advanced KC, but as the months rolled by and the cone got steeper the vision also went downhill.....and then I switched between a smaller RGP (rose K2) which gives me 2 more lines on the chart......but there not as comfortable so I switch between the two.

I think its about coping with what you have, each lens design has its own merits.....and initially I thought it was all a sales/marketing gimmick untill I actually took time in understanding how each lens design differs........and its quite amazing as to what these manufactuers do.

I remember Lynn mentioned that she had a good success rate with Kerasofts, but I also noticed when speaking with other Optoms that they wouldnt recommend them for medium/advanced cases.........but thats not to say Lynn was wrong........I think it just depends on the Optom and his/her experience with Lenses. Unfortunately, what I have found is that each Optom has a "preffered" lens type which they feel comfortable in fitting; so rather than looking at patient needs; they are more concerned on there needs; ie fitting a lens which THEY are happy with.............which is fine if it works...but not if it doesnt!

Guess if also is influenced by there scope of practice......if they havent had the wider experience such as yourself and Lynn than they may be reluctant to try something new for various personal/political reasons.

I know of one Opticians in London who will not fit any other lens for KC other than the standard RGP...if they cant get a good lens fit they refer straight to moorefields......so each swings and roundabouts..........money money money!

[John Smith]

I know of one Opticians in London who will not fit any other lens for KC other than the standard RGP...if they cant get a good lens fit they refer straight to moorefields......so each swings and roundabouts..........money money money!

Let's not forget, that for many people, a referral to Moorfields is a bit of a revelation. Waiting lists aside, all of a sudden we have other options to consider.

Speaking personally, I very much doubt that I'd be wearing sclerals unless I'd nudged my consultant towards the idea. And I'd not have known about them before reading this very forum!

[Ali Akay]

As I said before I don't have much experience of fitting keratoconics with sclerals, but I do sometimes use large diameter gasperms which can improve stability and comfort with the added bonus of MUCH higher oxygen transmission with modern high oxygen permeable materials.It doesn't mean practitioners fitting sclerals are doing anything wrong.As you say it's whatever works and I can see from the postings here that there are a lot of people wearing sclerals happily whereas most patients I've seen wearing sclerals (fitted elsewhere) were not happy with them and were refitted with other lens types.

[Pauline Houke]

Ali (& Lynn)
I would be interested to know under what circumstances you would suggest the use of the pinhole glasses that Jacqueline has asked about in one of the earlier posts on the forum.
A the end of te day my eyes do get tired and I would like to take out my lenses but I can't read or watch tv or anything without them in. I guess I would be able to do these things with the pinhole glasses on but I thought I was supposed to keep the lenses in for as long as possible each day. Would it hurt to take the lenses out for a while in the evening and use these glasses instead?
Also what are your opinions on the benefits etc. proclaimed on the website that Jay recommended to jacqueline.
(sorry I do not know how to copy the details into this post)

[GarethB]

Hi Pauline,

Do not know about your specific case, but I have always been advised to wear lenses for no more than 8 hours and if I wear them for longer, this should only be occasional.

The past three days, I have gone 14,12 and 12 and this morning in casualty! I have been told I have over worn the lenses and this has caused agrivation to the eye lid which has become inflamed. It has been confirmed that the top and bottom edges of the lens is flush with the cornea.

To see all day now, I wear one lens at a time, 8 hours per eye which gives me 16 hours. I have done this for so long now that when one lens cmoes out and the other goes in, it is as if a switch is flicked in my brain. Switching off one eye and turning the other on! This does not cause me headaches or eye strain.

Perhaps this may be of use.

Gareth

[Lynn White]

Pauline...

I actually suggested to Jacqueline she try pinhole glasses as she cannot wear her lenses at the moment. How they work is that only "on axis" light - the light that is in focus gets through the tiny hole and the other out of focus light does not. Its not perfect but it works better than glasses for people with KC.

Th reason you are told to wear your lenses as much as possible is to do with keeping the eye a reasonable shape. It doesn't mean you have to wear them every single hour of the day - and as Gareth says, many are only recommended to wear lenses for 8 hours because over wear can be difficult for KC corneas. Obviously each case differs here.

So yes you could try them at the end of the day so that you can see something while resting your eyes.

As for the claims....http://www.eyetrainers.co.uk/ well, since they create a clear (ish) image on the retina there really is no difference bewteen creating it with pinholes or creating it with glasses so that the claims for "weakening" the eyes do not stand up. Glasses do not cause retinal damage... and pinhole glasses do rather reduce your field of vision!

When you take the glasses off, you are just as shortsighted as before - so they do not cure anything... However, as I said, they are a great help in emergency situations when you want to see without lenses!

Hope this helps

Lynn

[Jacqueline Cheetham]

Thanks for recommending the pin holes. I only got them this morning so I haven't given them a fair trial. However, they definatly have given much better vision for reading and for the TV, not so much for the TV. They will certainly do the trick while I cannot wear my lenses. But are no subsitute for the sight I get when wearing both my lenses. Thanks for the explaination on why they work. I thought it might be something like that!!!!.

Jacqueline.

[Pauline Houke]

Thanks for that Lynn,
I think I will invest in a pair.
Mind I think I must be the bionic woman of KC. I have been wearing my lenses for 16 hours a day seven days a week for the last 8 years. And I work on computers for 8 hours a day. My optician has never told me to cut down!