6 months on and looking for advice

[madeye]

Hi Everone

First I'd like to come to the defense of Donald Cameron, one of the optometrists who presented at 2009 KC Conference. I've seen some posts where its been implied that Donald advocated RGPs as the only lenses for KC. My understanding from the Conference is that Donald believes that the newer lenses to-date had failed to deliver improvements in comfort, contact and corrective vision in the vast majority of KC patients compared with RGPs. And in that respect RGPs remain the gold standard. Just becasue something is new (e.g. Kerasoft3) doesn't mean it's better... everyone thought that rofecoxib (Vioxx) was the answer to replace NSAIDs (such as diclofenac and ibuprofen) on the account that it caused less gastro-intestinal upset, turns out rofecooxib increased your risk of heart attack too, and was removed from market... just a thought...

Rant over.

I am now 6 months post graft (DLK) in the right eye. I am a little confused. Before I saw the consultant I spent time with the optometrist who wsa checking I believe the refraction of the eye. Pre-graft no vision (apart from a blurry mess) was in the right eye. I always put this down to the progression of the KC and steepness of the cone etc. At the refraction the optometrist manged to get vision of sorts (I could see the 1st 3 lines of the chart) but they had to use a Sph -12 and a Cyl of +10. I was under the impression that post graft the refraction needed would be less? And why such a large power? I don't remember needing such a large power before the KC progressed. Can anyone explain? When I later saw the doctors and asked how the graft was healing, they seemed quite happy. However, when I asked specifically about the vision they said it was still early. I know 6 months it is earlyi but that response is just frustrating. If it helps I still have the stitches in and the pressure in my eye is slightly elevated (I'm really steroid sensitive despite being on only 1 drop Maxidex a day and Co-sopt).

Grateful for anyone's thoughts,

[rosemary johnson]

Hi madeye
SOundslike your graft has come up pretty shortsighted and very astigmatic.
It happens....
They should have explained to you pre-graft that it is rare indeed for a graft to give perfect vision. The aim is to make a surface that can be corrected (wth glasses/lenses) more easily.
Mine, three months post graft, came up as -14 on one axis and -9 on the other.
If I'm understanding it right, that's -14 sphere and +5 cylinder.
It's got more astigmatic since - probably by now about -14 sphere and maybe 8 cylinder.
ANd the angle of the axis has changed.
It's true that 6 months is early days - it can take 18 months or so to settle down.
Frustrating as that is.
If you have separate stitches, and if that level of astigmatism is bothering you, it may be possible for them to take some of the stitches out to try to even the shape up and lessen the astigmatism.
Contactlenses should take out the astigmatism - but if they fit anything but sclerals now, you'll be needing a new one in a few weeks, quite probaly.
Glasses, you'd need a gefty cylinder correction on the lens prescription, which can take some getting used to (I gather).
INcidentally, if you sit with a newspaper, do you open at a sudoku or crossword, that one set of lines is in focus with th paper about 5" away, and the other set quite a bit further - but when the horizontals are in focus, the verticals are a blur?
(you may have to turn the paper diagonally).
My grafted eye was quite sharp ab aout 4" within a week of the operation,and has been getting worse ever since. Igather lots of people do find it imprvos.
Rosemary

[rosemary johnson]

PS to the above:
it has been often observed that the medics' opinions on a "good graft, in terms of how well it has healed, etc, and lack of signs of rejection, and the patients' perception of how good the vision is, how well they can tolerate contact lenses in it, etc are two completely separate things.
They keep saying, for example, that mine is a super graft. Ha ha.
Rosemary

[Andrew MacLean]

Further to yours on RGP -v- other lenses: nobody whom I have ever read here has questioned the value of the RGP among the variety of lenses available for people with KC.

I wear an RGP in my left eye, and I like it. At times in the past I have worn a scleral (my all time favourite) and I have tried soft lenses with no success.

There is a debate in the optometry profession, and it is going on all the time in the Contact lens society.

Further to Rosemary's comment: six months is very early after a graft to be expecting settled vision. My sutures did not start coming out until 18 months, and it was a month or so before my vision stabilized enough to make it worth paying for specs. I now have good vision wearing glasses for my right eye and my RGP in my left.

All the best

Andrew

[GarethB]

At the 2007 confrence one of the ophthalmologists presenting said when they take the donor material, no two are a like because we all have slight differences in eye shape and you need to fit that into a KC eye which can make it hard to fit the precise shape.

If you have ever sewn a badge on a shirt or something which is flat it is hard to get it wrinkle free. Now try doing the same from a sphere to something resembling a shape of a rugby ball.

It should have been (and may be was) explained to you that the idea of a graft was to make lens fitting easier. Although your prescrpition is high (and you are still quite recent post graft as Andrew says) the astigmaitism may well be more regular which in itself may well make lens fitting easier.

Roesemary is quite correct in what she says a medical idea of a succesful graft is different to ours. Medically the cornea is clear, thriving and no signs of rejection. For some bizare reason the quality of vision we have is secondary but for us it is quite important as why elese would we go for the graft?

If you have a series of nidividual sutures, the consultant may well be able to control the level of aastigmatism and remove individual stitches. For most recovery period before being able to be fitted with glasses or lenses appears to be 12 - 18 months. Optometrists I have spoken to recently have said grafts can become damaged if fitted with lenses too early, so unfortunatly you are still in the waiting period for everything to heal.

Hope this helps.

[rosemary johnson]

I don't know why fitting a lens )or spectacles) early should e bad for the graft - unless the graft is already having problems.
The main problem is, when the eye is still changing shape, the required lens fitting and/or prescription is changing so rapidly by the time you get the lens, you need a new one already.
One can be fitted with clerals three months post graft (and someone on here had a scleral one month post graft).
A scleral will still fit over quite a bit of eye shape change, because it arches right over the cornea.
A corneal lens, you
'll probably keep needng a new fit. And prescription. ANd new glasses because the prescription changes.
NOTE: a contact lens corrects astigmatism just by being a contact lens (or at least, a scleral lens does). If you have glasses, you need a "cylinfer" power built into th elens to correct the astigmatism. So if the astigmatism changes, you need new glasses.
I got almost 6/5 distance vision with a scleral 3 months post graft. I still do (though the eye has got slightly less short sighted so I need reading glasses). I don't wear them because of lens tolerance problems for various reasons - a long story!
If a graft is healthy, th emain reason for not correcting the vision before 6 months is financial - most patients wouldn't want/be able to meet a bill for new specs/lenses every few weeks!
Note: IF - there may be some reasons this may not be advisable - ranging from rejection episodes or infections, or adverse reactions to eye drops.....
Rosemary

[GarethB]

If a lens is fitted while the cornea is still settling post any op it is possible that the cornea rubs on part of the lens and so causing scaring. this is why many consultants wait for three successive topographies that show the cornea has settled before fitting a lens.

Less of an issue if vision can be achieved with glasses because then it is a case of cost to replace lenses if th precription is still changing frequently.

Fitting a lens too early was one of the issues raised by NICE in their background information for CXL when they requested feedback.