UK Keratoconus Self-Help and Support Association

Hi I finally got to pick my Rose K2's last week and have a few comments to make.

First off I kinda made a stupid mistake and didn't check what lens I was putting in to what eye. My vision was okay, not great... but I'll get to that in a bit. Later on in the day, I put them back in, but in the other eyes to see if it was a lot different in case I got it wrong. To be honest, I just can't tell the difference! Very annoying, obviously my prescription is very similar. Is there a way to tell what is the left one and what is the right one!?

I'm finding my vision with them in is actually slightly worse than my glasses for reading at a computer screen, is this normal from a first test run? I've got a follow up appointment next week, perhaps they will tell me my prescription needs adjusting slightly? On a positive note I'm finding driving a lot easier with them... apart from night time, where there's no chance.

I know I need to give it time but it's still taking me around 15 minutes to get my contacts out... I suffer from anxiety a bit and it makes me feel awful when I can't get them out quickly. I guess it's just a tactic thing and I'll get there eventually? I hope so.

Generally, I'm finding them a bit annoying too as everything has a sort of soft glare added to it through my peripheral vision and simply looking 'up' when walking along is quite hard, especially in the wind or when it's sunny... can't stop blinking! At least I don't find them that uncomfortable really, sometimes I forget they're in.

Any general tips or words of encouragement lol? Thanks, Olly.

Hi Olly,

I'm pleased to hear that you've got your lenses. I'll try to answer some of your questions.

CrippsCorner wrote:First off I kinda made a stupid mistake and didn't check what lens I was putting in to what eye

We've all done that! It's best if you can get in the habit of always putting in/taking out the same lens first. Although even following this routine I've occasionally muddled my lenses.

CrippsCorner wrote:I just can't tell the difference! Very annoying, obviously my prescription is very similar

Not necessarily. Most people with KC have one eye which is more affected that the other so that the lenses can be quite different. Bizarrely the wrong lens can sometimes give a better vision than the correct one. I've had this in the past when my right eye had better vision with the left lens, this (I believe) was due to the wrong lens having a flatter (and unhealthy) fit on the right eye.

CrippsCorner wrote:Is there a way to tell what is the left one and what is the right one!?

There are various ways of telling the difference:
They can have R for right and L for left marked on them
Or a single dot on the right, or none or two marks on the left
Or you could have a gRey one for right and a bLue one right
Or if they are of slightly different designs it might be possible to see the difference side by side

As your lenses are both Rose K it might be worth asking if they have been marked. When I had Rose K lenses mine were marked with an R and L which could be quite difficult to see.

CrippsCorner wrote:I'm finding my vision with them in is actually slightly worse than my glasses for reading at a computer screen

Yes you could need a slight adjustment to the prescription, as you can see better in the distance it could be that the lenses are making you slightly long sighted.

CrippsCorner wrote:I know I need to give it time but it's still taking me around 15 minutes to get my contacts out.

You will get used to taking the lenses out, it's just getting used to it. I found a similar problem getting soft lenses out (I piggyback RGPs) even after wearing hard lenses for over 30 years I still struggled to get the soft lens out. But in time it becomes second nature.

CrippsCorner wrote:I'm finding them a bit annoying too as everything has a sort of soft glare added to it through my peripheral vision

This could be, and I may be wrong, something to do with the diameter of the optical zone an your pupil size. It is certainly something worth mentioning at your follow up appointment.

Hope this helps.

Lia

Lia Williams wrote:

CrippsCorner wrote:Is there a way to tell what is the left one and what is the right one!?

There are various ways of telling the difference:
They can have R for right and L for left marked on them
Or a single dot on the right, or none or two marks on the left
Or you could have a gRey one for right and a bLue one right
Or if they are of slightly different designs it might be possible to see the difference side by side

As your lenses are both Rose K it might be worth asking if they have been marked. When I had Rose K lenses mine were marked with an R and L which could be quite difficult to see.

That would be helpful! They didn't mention this at all, but I'm going back next week so will have to inquire.

Lia Williams wrote:

CrippsCorner wrote:I'm finding them a bit annoying too as everything has a sort of soft glare added to it through my peripheral vision

This could be, and I may be wrong, something to do with the diameter of the optical zone an your pupil size. It is certainly something worth mentioning at your follow up appointment.

I found this brilliant website yesterday that helps me to explain this...

http://visionsimulations.com/vision-sim ... -simulator

If you put the scroll bar up to about 1/3 way across, that's how I'm seeing any kind of light source. It's strange though, as it comes even from lights etc. on a television programme, not just 'in real life' as it were only other thing to mention at this point is that every 30 seconds or so I have to blink around 5-10 times and then the vision is very good, but it gradually decreases... I wonder if the contacts are moving too much. I can also see another effect of this by looking at text and moving my head around, watching the shadowing move with it. At first I was sure the shadowing was much better than glasses, and I can see that it can be, although I'd say it's negligible, overall. Hopefully we can improve on this.

Check out the 'Ghosted Vision' simulator too, really helped explaining to my mum how I see things without my glasses/contacts!

Thanks for your lengthy reply Lia, very helpful and reassuring as usual.

Well, after all that, I went back for my follow up appointment and we've decided to leave RGP's for the time being. I woke up the other day with horrendous pain in my left eye, honestly felt like there was a razor blade in there. It totally knocked my vision out for the day too... luckily I feel fine now but she had a look and could see marks on my eye. She said it could have been a one off or perhaps my eyes are intolerant to RGP's. To be honest, although I didn't find them that uncomfortable, they're still pretty horrible. They completely ruined my eyesight after taking them out for the rest of the day (i.e. putting my glasses on in the evening was pointless) and driving at night was just terrible.

At the end of the day the vision wasn't that much better than my glasses... so, I think I'm just going to have to put up with shadowing and double vision etc. on the basis that I can see well enough.

We are however, going to try another brand of soft lenses for high astigmatisms; I'm particularly interested in pursuing some kind of contacts mainly for driving, which I find frustrating in glasses. So, after 4 months I feel like I'm almost going back to stage one again, but I knew this was never going to be an easy or quick process.

Hi Olly,

I'm really sorry to hear that RGPs didn't work for you. There are lots of different lenses out there and what suits one person doesn't another. There is no standard fix. Good luck in trying the soft lenses for high astigmatisms.

Lia

Just thought I'd throw up a little update. Picked up my soft lenses yesterday... oh man the comfort! On another level to RGP's, and tbh the vision I'm getting atm is almost on par. I have:

Biofinity Toric in my left eye
Sauflon Clariti XR Toric in my right eye

Anyone have any experience with either of these? I'm finding the left eye to be very good (my better eye) but the right eye is still way off... hoping they can tweak that out with a prescription change.

Soft lenses I find are far superior than RGP's.

My only experience is of the Kerasoft brand, the Kerasoft II was an excellent lens and then I moved to the newer Kerasoft IC when that became available. Both are specialist soft lenses for KC and irregular corneas, so you always have this option if the high astigmatism lenses reach their design limits.

RGP lens mould the cornea, so depending on how long you were in RGP lenses will dictate how long the cornea demoulds, but once settled I now see better with soft lenses than I ever could with RGP lenses.

Hi Olly,

I'm pleased that you find soft lenses comfortable after your disappointment with RGPS.

I believe that the lenses you now have are for normal astigmatism rather than the irregular astigmatism caused by keratoconus, which is probably why you are getting better results in your better eye. They may be able to tweak the prescription to an acceptable level as, I understand it, soft toric lenses are commonly used in early KC. If they you can't get an acceptable level of vision with these then a specialist KC lens, such as the Kerasoft lens, could be the next option.

Lia

GarethB wrote:Soft lenses I find are far superior than RGP's.

My only experience is of the Kerasoft brand, the Kerasoft II was an excellent lens and then I moved to the newer Kerasoft IC when that became available. Both are specialist soft lenses for KC and irregular corneas, so you always have this option if the high astigmatism lenses reach their design limits.

RGP lens mould the cornea, so depending on how long you were in RGP lenses will dictate how long the cornea demoulds, but once settled I now see better with soft lenses than I ever could with RGP lenses.

I did actually start a trial with Kerasoft IC... then went to RGP's (long story) now I'm back to trying soft contacts. I didn't really know what I was getting until I picked them up as my optometrist has been on holiday! I only wore the RGP's for a couple of weeks, so shouldn't have a problem there.

Lia Williams wrote:Hi Olly,

I'm pleased that you find soft lenses comfortable after your disappointment with RGPS.

I believe that the lenses you now have are for normal astigmatism rather than the irregular astigmatism caused by keratoconus, which is probably why you are getting better results in your better eye. They may be able to tweak the prescription to an acceptable level as, I understand it, soft toric lenses are commonly used in early KC. If they you can't get an acceptable level of vision with these then a specialist KC lens, such as the Kerasoft lens, could be the next option.

Lia

My keratoconus is described as 'moderate' so hopefully there's something they could do with these. Strangely I found RGP's gave better vision in my bad eye than my good eye! But it's currently the other way round with these soft contacts. I wonder if it's possible to use a toric lens in one eye, and a Kerasoft in the other? I even wondered if piggybacking just in my bad eye would be a possibility but I'm not sure if that would just feel too weird?

Thanks for your replies guys