UK Keratoconus Self-Help and Support Association

hey all,

I posted a little while ago, its now been 2 and half months since i developed hydrops for the 2nd time in my right (non grafted) eye. I have been to see my consultants a number of times now and still there is no change. My eye still has a misty/opaque patch over the pupil/iris and although not uncomfortable it is frustrating as there is no point in putting my scleral lens in as its just blurry and foggy.

I was just wondering has anyone had hydrops that has completly settled after a few months and did the scar dissapear at all? I have just qualified as a physio but my eyes seem to get tired so quickly, i guess because i am working off one eye and the right one is very light sensitive. I have tried driving a little distance but it doesnt feel safe and i wouldnt want to put anyone else at risk so i have decided not to anymore.

I was just wondering whats peoples thoughts are really.... i was originally thinking of having a graft for this eye anyway as it has a large thick corneal scar which the hydrops has since made worse. Do you think i should ask to be put on the waiting list? Im only 22 so i know im young to be having a 2nd graft already but i cant see any other options and i would just like to get on and start my career!

Any thoughts/suggestions would be much appreciated

thanks for listening , sarah

Hi Sarah
Sorry to hear that your hydrops hasn't cleared yet. I've never had one myself, but I do know of people for whom it's taken 3-6 months or even longer before the haziness goes. Have you looked at the article about hydrops on the features section of our home page (under Articles from the KC clinic)? That might give you some reassurance. And a hydrops doesn't automatically mean you need a graft. Again there are people here who've happily resumed lens wear once their hydrops has healed. So be guided by what your specialist says at your next appointment. All the best
Anne

hi sarah,
sorry to hear of the still-hazy hydrops.
I've had 4 - so fellow-feeling.
tried to reply before but computer problems.
as regards grafts - I wouldn't decide anything till hydrops has had minimum 6 months to settle down.
personally....
more in part 2
Rosemary

part 2
" parts of a hydrops asically:
the membrane ruptures, lets fluid through to soak cornea.
Immediate cloudiness is this fluid. It has to drain awy
can take wekks/months.
the rupture has to heal over - quicly at first to stop more fluid escaping
then has to heal over properly.
this stage can leave scarring
van get permanent scarring.
if this is central and bothersome, , may mean graft is only way to get back clear vision
A hydrops can take several months to "settle" - as in , the eye to heal thoroughly
and get back to normal.
I found my eye was more sensitive - lower lens tolerance etc for ages, esp after Nos 2,3,4
I'd say 9 months to a year after Nos 3 and 4 .
I'm always light sensitive - very - at best of times.
more part 3

I was very light sensitive with one of mine as in dark glasses all day long

computer swallowed part 3 yesterday - trying again.
the longer after the rupture, the more likely the cloudiness is to be scarring rather than still the original waterlogging clearing.
But there could still be some still draining.
was it a complete "world-gone-white?
Initial scrarring can leave mistiness, and then improve over time.
sometimes it doesn't ...
just ahve to wait and see really, I'm afraid.
my2nd hydrops, vision seemed to improve over the next several months/year or so.
I came to London from college and started work with 4 month old hydrops still settling.
didn't want to cycle with only that lens for ages.
Settled eventually and much better.
Not really very misty, though, just not-too-good vision.
Hope yours will do the same.
really time will tell
part 4 coming I hope

part 4 got eaten by computer last night - here foes again.
another possibility : not only may misting improve slowly, but the brain gets bettter at coping with it.
that may have been a factor for me. But we all vary....

A thought: it's possible that after a hydrops the eye may change shape slightly.
so a lens may not fit, or be so comfortable, as well as before.
happened to mine after 2nd hydrops .
but again, may take a few months to settle down in this respoect too.

as regards grafts - not inevitable, but so after a hydrops. and always your choice, not a surgeon's! But if a hydrop does leave scarring, a graft may be a sensible option.
Personally, I'd say give it time to settle down before deciding one way or other.
Good luck with the physio! We have a few of us in the healthcare-related areas; not just doctors and nurses but also some masseuses, and other complemeantary therapy people.
How much are you able to work by touch if the eyes are playing up?
Rosemary

Thanks for your replies rosemary and anne very helpful. I think due to my age i am considering surgery for next year as i dont want the hydrops to keep reappearing and stopping me from getting on with my life.

I was just wondering what peoples experiences are post surgery vision wise? with my left eye i now wear scleral lenses which i get on well with but without the aid of lenses my vision is very poor. Does anyone wear glasses post graft? I would love even for when i just wake up in the morning to be able to put on a pair of glasses for my right eye!

Thanks again for your help
x

Hi Sarah

I had a transplant 12 months ago after a hydrops. Subsequently i have had another hydrops in the other eye which is relatively useless and i am now relying on my grafted eye.
I wear glasses and at best i am seeing 6/6 out of the grafted eye, that is without any stitches being removed so there is still a way to go to reduce my prescription etc...
Overall i have been very happy, and am glad that at least in one eye i dont have to worry about a repeat hydrops.
I love waking up and putting on my glasses.
All the best.

Tom

Thanks Tom thats made me feel better already im due to see my consultant at the start of December so i think im going to put my self forward for the waiting list, fingers crossed it goes better vision wise than the last one! Think it was just my age that was getting in the way what with being 22 and the unkown 'life expectancy' of a graft. How much is your hydrops affecting your other eye at the minute?

Thanks again

sarah