UK Keratoconus Self-Help and Support Association

Hi everyone...

I have recently started wearing RGP contacts and have been having some problems and concerns. I figured I airing some of these concerns here would be best as I am in real need of feedback and I am sure other people with similar experiences or knowledge could be of help

My Keratoconus is what you would call "moderate" I guess, and I just had my eyes crosslinked a couple months ago. Once I was fully recovered and ready for a contact lens fitting, i went to my optometrist who is an experienced keratoconus fitter, and she suggested the Rose K2 Abberration control lenses for my case. But it is now close to a month that I have been wearing my Rose K2 contact lenses and although I am now able to wear them for the full 6 hours, I have to admit that Iam not too satisfied with the outcome so far and I am a bit worried. I fully understand that wearing RGPs takes time and patience to get used to, but my problem is not with the comfort as much as it is with the efficacy of the lenses. While wearing the lenses I have experienced the following:

1) Prominent "rings" of light "flare" that don't seem to go away as long as I am wearing the lenses, and they are really annoying as they seem to"get in the way" of my vision especially when I am indoors or outside at night. My optometrist says, patients usually learn to "ignore" these rings with time. I also worry about how safe my night vision is with all this flaring especially if driving.

2) Visual acuity almost never seems to be consistent. On many occasions, I feel that between blinks the acuity of my vision changes significantly, and this especially worries me when it happens while I am driving, as my vision becomes really blurry and I have to blink repeatedly to get back to normal. I worry that this is not safe. It also bothers me when reading and writing as I feel conscious of my vision all the time and unable to concentrate.

3) When I cover my right eye and try to see with my left eye alone I noticed that there is frequent "ghosting". I don't have that problem with my right eye. Also the visual acuity seems much lesser because of
that when I see with both eyes.

My optometrist says that my vision with the contacts is 6/6. The optometrist has been increbily patient with and extremely supportive and forthcoming, and although we have discussed my conerns above at length, still feels that I should give it more time and genunely feels that other types of lens options are unliekly to be better. For the flaring it was suggested that I wear my contacts during day time and slowly extend wear time into the evening as my eyes will adjust to the glare issue which is really bothering me.

What do you folks think of this? Any suggestions? anybody expeireced the same?

Hello and thank you for your description.

I think that you are sailing in uncharted waters; I am not sure how many people who have had CXL are now wearing contact lenses. Could your reaction be a combination of the crosslinking and the lenses? I ask because I do not know, but your optometrist may.

It may also be that the RoseK was the right lens to try, but that experience is showing that it is not ideal for your eyes.

All the best. Please do keep us in touch with your progress.

Andrew

Hi Bluesfan,

Having tried numerous types of Rose K lenses over a number of years i must say your experiences of them sound very similar to mine. Whilst i can't tell if your symptoms are the same as mine or if the reasons for the your problems are similar to my experience, i can tell you what i found over at least 5 years:

1. When i had Rose K lenses, the "rings" and "flare" i had was caused by the lens being too small as compared to the diamater of my pupil. This meant that at times i was looking "around" the side of the lens or through the periphery of the lens which did not give good vision. This fits with your description because when you are out at night your pupils will get larger and the problem can be more pronounced. I never managed to ignore them as they were too much.

One of the ways some Rose K lenses work is by having a smaller diamater lens. Often fitters look for a smaller diamater to get a fit but the smaller lens can take some getting used to. I could never cope with anything below a 9.5mm but you dont say what your diamater lens is and there are loads of factors to fitting a Rose K lens. This may be something worth asking your optician because you can get different Rose K lenses which go to larger diamaters. The following site has more info on the method of fitting and types of lenses: http://www.blanchardlab.com/products/ro ... eters.html

2. I also suffered variable vision with the Rose K which was largely caused by the lenses not sitting as well as other brands i had tried. In my experience the flucuations were caused by the lens moving around in my eye quite a lot.

3. It may be that this eye is the worse of your two eyes. I'm not too sure of the reason for this.

I used to get excellent vision with the Rose K's in the opticians chair and much better than standard RGP's at times. Often i would get 6/5 or better with the Rose K whereas the standard RGP got around 6/6 - 6/9. However this was not the whole story. Managing outside the opticians with the Rose K was not really possible and i ended up going back to my standard RGP's which were almost as good for the vision in the opticians but infinately better in everyday life.

It may also be that the CXL is taking its time to settle down. Please remember that what i found may not be the same for you. My advice would be to consider whether you are happy with the vision or whether you are prepared to invest the time (and expense) in trying other lens options to see how they compare. If so i am sure your optom will be more than happy to give other things a try.

1. I had really bad problems with this light flaire thing. I told my optition (Keratoconus specialist) about this. She explained that it happens because the light hits the contact lens and scatters around the edge. She simply fitted me with a larger contact lens and the problem went away.

Rose K lenses can sometimes affect vision - ghosting, flaring etc, because the back optic zone diameter on this lens design is smaller than most other keratoconus lens designs. It is smaller for a good reason. That is to improve the fit and comfort of the lens and ultimately give better management of the disease. There is sometimes a trade off between comfort and vision. It is possible to increase the overall diamete of the lens which will proportionately increase the back optic zone diameter. But in doing this the base curve of the lens and power of the lens will need to be changed accordingley.
I'm not sure whether the Cross linking may be playing a part in your case. It is important that your optician gets the fit of the lens correct and the lens to centre with good lens movement on the blink. If this is not happening then you will experience these visual problems.

Bluesfan

You already have very good responses from everyone but let me add what my optician said about the glares and the flare. She said it was normal to a certain extent and would always be worse when driving at night (glare from other cars) and when infront of the computer. She therefore fitted me with antiglare sspectacles with photocromatic lenses which I wear all the time now especially when I am in the office and infront of the computer. The spectacles have no power and I used them as sun glasses.

I am really pleased you asked the question though cause I thought I was the only one with this problem.

All the best - Mwana