Piggyback lenses

[Helen G]

Hi
This is my first post although I have read a fair bit of the forums.
I was diagnosed with keratoconus about 20 years ago. My right eye was much worse than my left and I had a cornea graft for my right eye about 15 years back. The vision after the initial (very long) recovery was brilliant, I barely used the glasses I was prescribed and used to enjoy needlecrafts, really there was no issue with my vision at all.
Around 12 months ago I noticed my vision wasnt so good, by christmas I was struggling to see to do things I always took for granted. I made an appointment to get new glasses thinking that I was just getting old - it didnt occur to me that there was any significant problem at that time. My optician was concerned about left eye (non graft) and although he prescribed new glasses warned that they were a huge increase and to learn to wear them slowly. I tried for weeks to wear them but I was disorientated and suffered with even worse double vision, the blurriness was almost better.
After several phone calls and trips to my gp I finally got a call back from my hospital consultant who suggested refering me to the hospital optomotory unit for contact lenses. I now have RPG lenses for both eyes, a large lens for the grafted eye and a small one for the other. I have been wearing them about 6 weeks so far. Short distance are fairly good, but long distance is awful,to see a persons facial expressions I need them to be standing no more than about 6-8 feet from me with the lenses in. I went back to the hospital 2 weeks ago and they took another scan and said that my eye had worsened again (only 4 weeks since the last scan) and the left lens wasnt fitting properly, hence I did not have stable vision. They tried many different lenses but were unable to find one that actually fitted, they all moved excessively when I blink. So then they tried using a soft lens under the RPG to hold it in position better, there was still some movement but it was an improvement. I go back to the hospital tomorrow for a new lens, I am pretty fed up with my poor vision for the past few months, my vision still seems to be getting worse week on week.
The lens I have at present I can only wear for 7 hours, i wondered if other people wear piggyback lenses and if they have good vision without any problems?
I also started using some optrex dry eye drops recently, they seem to really help me eyes feel more comfortable, so I didnt know if I should talk to my doctor about that too?

Helen

[Anne Klepacz]

Hi Helen and welcome to the forum! And if you're not already on our postal mailing list, do e-mail me anne@keratoconus-group.org.uk with your postal address, and I can send you the DVD of our 2007 conference which covered all the current options for KC. You'll also get our regular newsletters and the DVD of our recent 2009 conference when that is produced.
Sorry to hear that you're having problems now after so many years of good vision. But contact lens technology has come on a long way in the last few years, so hopefully you'll find something that works for you, even if it does take a little while to get there! I've never piggy-backed, but there are lots of people here that do, so I'm sure they'll share their experiences with you. And lots of us do use various drops to help with dry eyes. Again there are loads of different ones now, though it sounds as though you've found one that works for you already. All the best for your appt tomorrow.
Anne

[GarethB]

Helen,

What you describe in your right eye sounds similar to what Iwent through in early 2004 at a similar graft stage. Although with RGP's I got good vision and all the optometrists (including the one that fitted me with the Kearasoft lenses) thought the RGP lens fit was as close to ideal for a post grafted KC eye until I became lens intolerant. December 2008 I started to use Kerasoft K3 lenses and we found that the RGP lens had actualy drawn the cornea out so making it appear worse than it was. Over the last six months my corneas have gone flatter and so have become easier to fit with a lens. From personal experience I would urge caution if you try piggybacking on a grafted eye as the distance oxygen has to go through is greater. I suffered odema and just thought it was a lens fogging which ahs been reported by soem who piggyback lenses. Instead it was the graft being unable to get enough oxygen so it became waterlgged which is a risk business for a graft as it could lead to rejection. I found this to with the Kerasoft II lens but the later Kearsoft 3 and Kerasoft IC lenses are a high watre content, high gas permeability silicone hydrogel soft lens which means I am RGP free now.

We think now the problem of fluctuating vision was more down to dry eye, so a simple change in diet, more fruit rather than fruit juice, less cafinated drinks now on planty of water and milk and eye drops for dry eyes and antihistamines for the summer and my eyes are much improved.

So it might be that the RGP lenses might not be the best solution for you, we are all differenct so have to try many lens types before we find the one best suited to our needs.

[Helen G]

Thanks for your reply, the lens for my grafted eye seems to be ok, they are trying piggy back with the other eye only, so i don't know if the risks are the same.
I am not really very knowledgeable about the lenses or treatments, the hospital do not say what they are and I didn't really think to ask. The vision in my right eye (grafted) is just about at the 4th line of the eye test chart with lenses, my left tye is now worse than the right. They have said i have atypical keratoconus and the problem is in getting a lens that doesn't move too much, not because of discomfort, the vision just isn't stable as when I blink I have half the lens in my field of vision. I just want to be able to see well enough to drive - or failing that to be able to catch a bus on my own!

Helen

[optom]

HI Helen welcome!!!! dont fret yet contact lenses fitting can be a long process which much trial and error but it will hopefully be worth it in the end. my background would be as follows , i have been wearing rgps on my left since i was 12 years of age and i am now 21. About two years ago i changed from virgin (for want of a better word) rgp wearing to a piggyback combination. For me this consists of a pure vision soft lens -0.25 power and 8.6 base curve and on top of this i wear a rose k specialist KC lens. i have no difficulty with it at all however i am using a piggyback combo more so for comfprt and protective purpose rather than unstable vision. i know it must be frustrating when your vision seems to be getting worse and no solution seems to be working but i urge u to stick with the contact lenses trials as i think there is a lens out there that will hopefully suit you

[Andrew MacLean]

Helen

Just wanted to add my "welcome" along with the others.

Andrew

[Lynn White]

Helen,

Gareth is right, there is a body of research that shows that fitting RGP lenses CAN steepen the cornea. Here is one article that found,in an experiment, steepening within 4 hours on normal eyes. http://cat.inist.fr/?aModele=afficheN&cpsidt=15911594

Now, this is not something that always happens but many RGP fitters will agree that sometimes when a keratoconic starts wearing RGPs, the lenses have to be changed very rapidly due to steepening. It then becomes difficult to separate out steepening due to KC progression and that due to the effect of RGPs on a cornea that is less rigid than normal. (As is the case in keratoconus). Incidentally, when I lecture on fitting soft lenses for keratoconus, I am asked by optoms - surely they are even worse than RGPs for coping with continuing steepening. Well, actually, no. Patients do not tend to suffer rapid steepening such as you are describing. Also, especially with new soft lens materials, wear times of up to 18 hours are quite normal due to both the comfort of material and also oxygen transmission.

There are lots of different contact lens options out there: Soft, hybrids, semi scerals, sclerals as well as piggy backing. RGPs tend to be the first port of call for fitting keratoconics but are certainly NOT the only option. Seven hours wear is NOT an acceptable situation to be in - so you need to make sure all avenues are explored.

Which leads me onto why your keratoconus has started to activate again now. It is, possibly, due to hormonal changes which can trigger off dry eyes etc. I would most certainly discuss this possibility with your doctor and get him to run blood tests and general health checks to identify if hormonal changes, or anything else medically, could be contributing to your keratoconus. As well as the excellent advice from Gareth, consider looking at cod liver oil and flaxeed oils as they too can reduce dry eye symptoms. Make sure you don't have a magnesium deficiency as well, as this has also been shown to affect KC in some cases.

Dry eye can affect normal eyes markedly - I have seen topography readings that look dreadful but recover markedly when dry eye therapy is rigorously applied. The effect can be much worse on keratoconic eyes, which are more sensitive to any condition like this.

Lynn

[GarethB]

I think the only technical term Lynn missed out was Corneal Warpage

[melissa]

i have been wearing piggyback in left eye for 4 years (right for 3 until transplant), and found they dramatically helped my comfort and stopped the lenses opping out. i went from suffering regular abrasions to hardly any (none on left eye at all) and found confidence to do more active things as i wasn't so worried about loosing the lenses all the time. i suffer a bit from dry, burny eyes as there are now 5 surfaces to be lubricated instead of one, but some drops seem to keep that under control.
everyone is different so i hope you find the soultion that suits you.

[Helen G]

Thanks for your replies again, its great that I now have new things I can try that may well help!

I went to my appointment at the hospital again yesterday, quite a lot of things went on. The new RPG lens they had ordered did not fit, so after many different lenses the best they can do for now is a piggy back - PureVision soft lens with my previous RPG on top. Actually the vision does seem much more stable and its very comfortable, so for now I feel a little happier.

She also prescribed some eye drops for dry eye, which should mean eyes feel more comfortable too.

But... whilst testing my vision, I told them I could see the letters at ends of the lines more clearly than the centre, and that if they turned off the backlight I could actually read almost an extra line. Although every letter (as indeed everything that I see) has shadows or double edge to it. Apparently this isn't consistent with KC vision so I got sent off for more tests, and they found some snowflakes at the back of my lens. From what I'm told it is some kind of cataract and is causing the light sensitivity and double vision... but most importantly can be fixed. I am now awaiting a phone call to arrange an appointment to see the consultant to discuss it all.

In a way its a blow, finding that there is another problem, but on the other hand relief that there is actually something there and its not just me complaining about nothing!