Hi Guys
Im a patient with KP at Moorfields however have moved to Mancehste ron a six month project
All was well with my Scl Lebs until last nite!
Out of the blue....I woke up at about 6am had a bath then went to put my lenses in....and my right eye was Blurred WITH the lenses in....so I thoight "Ok maybe didnt wash it with Saline enough" so Did it again..same thing..blurry vision
Thats when I panicked..........then I got my head straight and thougght this must be Hydrops....so got on the web and found the Manchester Eye Hospital....went to AE and then got refered to the Specialist all with 2 hours....and they confirmed it was Hydrops. They said it was good that I came in fast...however all they did was give me Ant biotics and also another solution which dilates the pupil
Now I cant wear my lens in that eyes until the mistyness goes; I also have an APPT there in 2 weeks...
Anyone been through this?.....any info GREATLY appreciated right now..had a bit of a depressing day about this.....just wanted to hear others who have had it and what they did, how long it lasted etc
The Opt there said I will have some scarring on the Cornea and started talking about Transplants etc....and surprisingly enought was surprised i was wearing SCL lenses......lol oh well!....if its between wearing corneal and scl lenses ill have Scl lenses anyday!!!
Jay
Quicktopic posts: Dec 2003
Moderators: Anne Klepacz, John Smith, Sweet
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sajeev
Hello Everyone,
I have FOUR things I want to share with you guys:
1, I tried on the NEW "Mini"-Sclera lately, WOW ! They were really great. I think they are a real break-through in lens design. They are smaller than the older type scleral, with all the benefits of the older larger sclerals.
2, Does anyone know what is happening with INTACS in this country. It has been approved in the USA and it not only corrects vision for keratoconus patients but it has been proved to stop any more progression.
3, what do you guy think of the info. at http://www.lombardieyeclinic.com
$, I think we all need to make more NOISES, exspecially because "we are all in the same boat, together" and facing all these problems when there is treatment on offer in other countries, (when we are needlessly suffering).
Thanks
Sajeev
I have FOUR things I want to share with you guys:
1, I tried on the NEW "Mini"-Sclera lately, WOW ! They were really great. I think they are a real break-through in lens design. They are smaller than the older type scleral, with all the benefits of the older larger sclerals.
2, Does anyone know what is happening with INTACS in this country. It has been approved in the USA and it not only corrects vision for keratoconus patients but it has been proved to stop any more progression.
3, what do you guy think of the info. at http://www.lombardieyeclinic.com
$, I think we all need to make more NOISES, exspecially because "we are all in the same boat, together" and facing all these problems when there is treatment on offer in other countries, (when we are needlessly suffering).
Thanks
Sajeev
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gemstone@umbilical.demon.
Dear Jay,
Welcome to the hydrops club! We seem to have had several folks
having hydrops recently. Is it time we posted some "case
histories" on the KC Group web site?
Anyway.....
I've had 4 and survived, so far without needing a graft.
As I presume you know, a membrane splits and lets fluid through, and the fuzziness you see is the waterlogging of the tissues on
the far side of the membrane, where the fluid has flooded in
through the split.
There's nothing you can do about it until a) the split has healed and b) the excess fluid has drained away. Some hospitals seem
to like to give out medications, others say there's nothing that does any good so don't bother to waste them on you. I've had
people try to prescribe me pain-relieving ointments; if you pay
NHS prescription charges, it is cheaper to go out to Boots and
buy a pack of paracetamol/aspirin/neurofen if the eye hurts.
How long will it take? - anything from a fortnight to three
months. If you vision is "misty" rather than totally white,
then probably at the shorter end of this time scale (though it
may have gone whiter by now??) Be warned, though, that the eye
may feel "tender" and have reduced lens tolerance for a few
months, even after it has allegedly healed.
You'll be lucky to escape with no scarring whatsoever - however, th amount of scarring varies quite a lot. My first hydrops left almost none (and was whited out for a month); the second a bit
more so. SOme people are really unlucky and the healed split
scars badly. You can't really tell until it has healed up and
drained, and then see how it is doing.
Whether it will need a graft depends on how much scarring there
is - you shouldn't "need" one unless you get bad scarring. In
most cases, one can live with a bit of scarring and often that
is preferable to surgery (the brain does get used to seeing
round it) - though opinions of hospital staff seem to vary quite a bit on this.
One thing to note, though, is that it is not possible to do a
graft until the hydrops was thoroughly healed up and the
waterlogging dried out completely. BEWARE of any hospital that
tries to tell you otherwise!!
Hope this helps. I know the sudden onset of a hydrops can be
very worrying and it doesn't feel very reassuring to hear
there's nothing you can do for a month or so bit sit and wait
and see what happens, but I'm afraid that's so (and no, I don't
know why your A&E people said it was good you came in so soon,
nor why they made an appointment in only two weeks - changes are this will be too early to tell you anything useful). I hope it
does all clear up well for you, and that you can manage to cope
meanwhile.
Keep us posted, won't you?
Rosemary
--
Rosemary F. Johnson
Welcome to the hydrops club! We seem to have had several folks
having hydrops recently. Is it time we posted some "case
histories" on the KC Group web site?
Anyway.....
I've had 4 and survived, so far without needing a graft.
As I presume you know, a membrane splits and lets fluid through, and the fuzziness you see is the waterlogging of the tissues on
the far side of the membrane, where the fluid has flooded in
through the split.
There's nothing you can do about it until a) the split has healed and b) the excess fluid has drained away. Some hospitals seem
to like to give out medications, others say there's nothing that does any good so don't bother to waste them on you. I've had
people try to prescribe me pain-relieving ointments; if you pay
NHS prescription charges, it is cheaper to go out to Boots and
buy a pack of paracetamol/aspirin/neurofen if the eye hurts.
How long will it take? - anything from a fortnight to three
months. If you vision is "misty" rather than totally white,
then probably at the shorter end of this time scale (though it
may have gone whiter by now??) Be warned, though, that the eye
may feel "tender" and have reduced lens tolerance for a few
months, even after it has allegedly healed.
You'll be lucky to escape with no scarring whatsoever - however, th amount of scarring varies quite a lot. My first hydrops left almost none (and was whited out for a month); the second a bit
more so. SOme people are really unlucky and the healed split
scars badly. You can't really tell until it has healed up and
drained, and then see how it is doing.
Whether it will need a graft depends on how much scarring there
is - you shouldn't "need" one unless you get bad scarring. In
most cases, one can live with a bit of scarring and often that
is preferable to surgery (the brain does get used to seeing
round it) - though opinions of hospital staff seem to vary quite a bit on this.
One thing to note, though, is that it is not possible to do a
graft until the hydrops was thoroughly healed up and the
waterlogging dried out completely. BEWARE of any hospital that
tries to tell you otherwise!!
Hope this helps. I know the sudden onset of a hydrops can be
very worrying and it doesn't feel very reassuring to hear
there's nothing you can do for a month or so bit sit and wait
and see what happens, but I'm afraid that's so (and no, I don't
know why your A&E people said it was good you came in so soon,
nor why they made an appointment in only two weeks - changes are this will be too early to tell you anything useful). I hope it
does all clear up well for you, and that you can manage to cope
meanwhile.
Keep us posted, won't you?
Rosemary
--
Rosemary F. Johnson
-
gemstone@umbilical.demon.
PS: Solution to *dilate* the pupil????
Any idea why they gave you this?
My experience of hydrops is that the eye affected can get more
light-sensitive than usual - if so, the last thing you want is
to have the pupil *dilated*, as that will only make the pain
from the light-sensitivity worse!
Rosemary
--
Rosemary F. Johnson
Any idea why they gave you this?
My experience of hydrops is that the eye affected can get more
light-sensitive than usual - if so, the last thing you want is
to have the pupil *dilated*, as that will only make the pain
from the light-sensitivity worse!
Rosemary
--
Rosemary F. Johnson
-
Brian Taylor
-
Jay
Rosemary
Many thanks for the response
I have no idea why he have me those drops either; he also gave me antibiotics as well....and just researching I have seen no cases had this prescribed; maybe he was being safe?
I have seen people over in the states having taken Sodium Chloride 5% which allegedly drains the fluid out by drying the cornea...B&L make it called Muro 128; but not sure where to get it...I mean at the end of the day its sterile salt so I doubt anything bad could happen
My experience at the Manchester Eye clinic was some what mixed. I knew there place would be full of final and post grad students and I was correct. The guy who saw me was around 26 ish and just came across so Blase....and he has this trainee with him and got excited when he saw me....oe -err lol....but I mean as I had KC. So he called another 2 people...to take a look.....then he just mumbled off text book definition of KC.....YAWN....lol
But the funni thing was....guess what he said first...if it doesnt heal youll have to have a Corneal Graft....in this case it was in one ear out of the other...but I thought Id play along with him and say "Why" and he said well its bund to come and go, and its not good for the eye, and yull get bad scaring blah blah blah....but to him the solution was a graft....bless him!!
I just find that in most cases of KC I have known more on the condition than the person seeing me....I can confidently say that aside from Ken at Moorefields and 2 others also at Moorefields...alot of the rest just dont know more that Text Book rambling...sad but true!!
When I was went for my first lens change about 5 years ago I went into a well knownHigh Street Opticians...No Names Mentioned......and the lady day just didnt have a clue...she said a) my cornea will eventually come off; I shuld get a transplant and she was refering with me URGENT stamped n the letter to my GP LOL..............NO JOKE!!!
So you see...if and when I do go the Trnasplanr route there is no way in hell ill go with anyone
Jay
PS - I remembered why he gave me the pupil dialating drops...he said that it will help my eye open...and not get lazy....suffce to say I have NOT taken any of the drops.....no because Im being stubborn but in this case I just feel I know a little more on the overall condition than the person who saw me....But on a lighter note...there is now NO pain in the eyes, I can open it fully, and its still Misty...but not white thank god.
Many thanks for the response
I have no idea why he have me those drops either; he also gave me antibiotics as well....and just researching I have seen no cases had this prescribed; maybe he was being safe?
I have seen people over in the states having taken Sodium Chloride 5% which allegedly drains the fluid out by drying the cornea...B&L make it called Muro 128; but not sure where to get it...I mean at the end of the day its sterile salt so I doubt anything bad could happen
My experience at the Manchester Eye clinic was some what mixed. I knew there place would be full of final and post grad students and I was correct. The guy who saw me was around 26 ish and just came across so Blase....and he has this trainee with him and got excited when he saw me....oe -err lol....but I mean as I had KC. So he called another 2 people...to take a look.....then he just mumbled off text book definition of KC.....YAWN....lol
But the funni thing was....guess what he said first...if it doesnt heal youll have to have a Corneal Graft....in this case it was in one ear out of the other...but I thought Id play along with him and say "Why" and he said well its bund to come and go, and its not good for the eye, and yull get bad scaring blah blah blah....but to him the solution was a graft....bless him!!
I just find that in most cases of KC I have known more on the condition than the person seeing me....I can confidently say that aside from Ken at Moorefields and 2 others also at Moorefields...alot of the rest just dont know more that Text Book rambling...sad but true!!
When I was went for my first lens change about 5 years ago I went into a well knownHigh Street Opticians...No Names Mentioned......and the lady day just didnt have a clue...she said a) my cornea will eventually come off; I shuld get a transplant and she was refering with me URGENT stamped n the letter to my GP LOL..............NO JOKE!!!
So you see...if and when I do go the Trnasplanr route there is no way in hell ill go with anyone
Jay
PS - I remembered why he gave me the pupil dialating drops...he said that it will help my eye open...and not get lazy....suffce to say I have NOT taken any of the drops.....no because Im being stubborn but in this case I just feel I know a little more on the overall condition than the person who saw me....But on a lighter note...there is now NO pain in the eyes, I can open it fully, and its still Misty...but not white thank god.
-
Brian Taylor
Jay
I have used the salt solution you mentioned. It can be obtained from a chemist and my Doc put me on it to dry out my cornea when my grafts were coming to the end of their life and were waterlogged. It did help and caused no harm to me, but if you want to use it I would check with your Doc first.
Good luck
Brian
I have used the salt solution you mentioned. It can be obtained from a chemist and my Doc put me on it to dry out my cornea when my grafts were coming to the end of their life and were waterlogged. It did help and caused no harm to me, but if you want to use it I would check with your Doc first.
Good luck
Brian
-
Jay
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Andrew Thomas MacLean
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