UK Keratoconus Self-Help and Support Association

I haven't been able to get what I wanted from them. Main problems are:

1) My left lens (my bad KC eye) always has a hazy/cloudiness when I have the lens in. It is really annoying, and we haven't been able to fix this.

2)My eyes are EXTREMELY light sensitive with them in, much moreso than without. It's very hard to be outside when its sunny, even with sunglasses.

3)My vision is so terrible for a few hours after I take the lenses out. Its extremely cloudy. I find it hard to do much during this time.

I actually went back to my soft contact lenses the past few days (my keratoconus is fairly mild, so I can get pretty decent vision with soft ones). I've noticed that my sight is really not significantly worse with the soft lenses in, and I don't have any of those terrible side effects. Just the fact that I don't have that annoying cloudiness all day in my left eye makes it so much mroe comfortable. I think I may just go back to soft ones (a tough decision after all of the work we went through).

Anyone have any suggestions about something I should try? I guess I could always try some of the RGP's with the soft lens skirt around them. Would they give me better vision then soft ones? Or are there any other soft style lenses that would get rid of the problems I have been having?

Thanks

Tim

1) No idea why this may be the case, but I have heard of a paper just undergoing a peer review by a Japanese resrearcher. The study from what I can gather is looking in to why in some cases the optom tells us the lens fit is perfect, but no matter what else you do, we still see nothing or vision is poor. The suggestion is that the tearrs between the cornea and lens are casuing secondary aberations n addition to what we already have so making matters worse. This is unpublished at present.

2) Know where you are coming from and sunglasses are useless to me, I use safety glasses from work that are designed for use with UV lights and lasers. Still legal to drive, look live very dark sunglasses and work brilliantly. Made in the US by North Safety, called Tornado. My theory is that you like me have eyes that are not used to light going where it should so it is a shock to the system when it does. Light sensitivity for me is less than it was, but has taken three years to get where I am now.

3) That is normal because of the pressure the RGP lens will put on the cornea. This is why many peopel fear there KC has got worse when it has not. Most optoms I spoke to before trying Kerafofts told me to go 24 hours before trying a soft lens to let the corne relax. The companty I have been involved with trying a new soft lens have found for me anyway that it takes 7 days for the cornea to return to its normal shape once freed from RGP's so need to get a new set of soft lenses made to trial. Having said that, get good vision from the softs.

Tim, you really need to discuss with your optom where you go from here as there are so many styles of RGP lenses they all may be useless or one might be a revelation.

If you want to go the soft route try the Kerasoft lens. The only issue I had was oxygen permeability because I am post graft and I have never heard anyone else having this problem.

Hold on until tomorrow and I can hopefully be able to share with you the information on the lens I have been trying with great success. Just need the OK from the manufacturer so I do not give away any company secrets, but they have seen my draft post and there is not much to add to it.

Tim

I agree with Gareth. There is a wide range of lenses available made in an equally wide range of materials. Just because one lens has not suited does not mean that another would be unsuitable.

The problem is that we are all different. I was helped at different times by a range of different lenses and lens types, culminating in the haptic that I wore in the last months before my eyes became completely lens intollerant.

I'm afraid that it has to be back to your eye care professional: explain why the RGP you have tried has not been suitable and throw down the gauntlet with a challenge to overcome the difficulty.

All the best

Andrew

I had the problem with the hazyness on the lens and in my case things improved when I switched to using a seperate cleaner and conditioner. There was a protein build up on the lens. Now I rarely get the hazy problem.
Worth a try?

Yeah thats good advice. I'll give it a shot. I have been using both Boston Cleaner and Solution. I recently bought a bottle of Clear Care Solution, so I'll open it and try it. The only strange thing is how the haziness only happens on the left lens. Makes me wonder if it's something with that lens on the eye.

You're not getting air bubbles under the lens are you? - mine go cloudy sometimes with air bubbles, I move them around my eye a bit, maybe with some drops in and it usually goes away. I think it's when the fit's not perfect that you get a lot of air bubbles but a perfect fit isn't always possible. Good luck!
Ann

Tim

Been back through my KC diary and there was a time when my eyes rather than lenses went hazy. I was trying one of the early soft lens designs then from the hospital (January 2007). The cause of this was lack of oxygen to the cornea so the cornea became waterlogged as the eye attempted to get oxygen to it. When this got really bad I would see a rainbow coloured halo round lights which disapperaed over the next couple hours.

Something like this MUST be discussed with your optom as it is bad new for the health of your cornea.

Wanted to update my situation...

I went in for an appointment today, and we both felt that going back to soft lenses is my best option for now. We tried SO hard for months to make the RGP's work, but just couldn't get past the complications I was having, and soft lenses were really my best option right now. I'm ok with that for now since my eyes aren't too bad yet. I'll just have to deal with the fighting with my eyes, and the headaches and such...but I've been dealing with it for years now so nothing new. I'm really interested in those new Kerasoft 3 lenses I've been reading about here. Something like that sounds very promising for me. Guess it could be a while until they are available in the US, but I'll keep an eye out for them or any other new developments in lenses.

Hi there Tim

You might want to check out synergeyes contacts. I did give up on RGPs after almost a year trying. I found synergeyes contacts almost as comfortable as soft contact. I belive they are pretty difficult to fit so its worth the extra effort to find someone workt with them for a while and are familiar with fitting keratoconus patients.
http://www.synergeyes.com/ourlenses/synergeyes_kc.html

good luck!
David

Sorry to hear you are having such a rough time with rgps. I think your move to soft lenses makes sense. Although I got good eye-sight with rgps, I suffered with the other symptoms you mention, especially discomfort and photo-sensitvity. I persisted with rgps and ended up with cists and eye-lid infections. Sometimes it is easy to cross from persistence to recklesness as you can see. I get reasonable vision with soft lenses but not as good as rgps. I have since had the left eye grafted which should improve the eye-sight and/or provide a better surface for lenses. But I am sticking with a kerasoft lens for the right eye until I can that eye grafted too. I think you are wise to try all the different kinds of lenses you can.