My name is Mac Greco. I recently became aware of the group and registered earlier today. I was diagnosed with Keratoconus about 4 years ago, but with the aid of gas perm's I have been able to avoid any substantial interference with my life. This changed last Tuesday when I woke up with a complete white out in my right eye. It has remained unchanged. After presenting to my cornea specialist, I have been told I have hydrops. Although I have been researching this complication pretty extensively since the onset, I would be interested in hearing from members who have experienced this phenomenon and what i can expect as far as best and worse case scenarios for resolution or the chances I may need a transplant. Also, I have been told there are no drops that can assist the healing or assist in allowing the edema to leave my cornea. Has anyone received different information?
Thanks,
Mac Greco
Hydrops
Moderators: Anne Klepacz, John Smith, Sweet
-
Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Mac
Good to meet you. I am sorry to hear about your hydrops.
I guess that by now you know that this is a slight lesion (a tear) in the membrane that stands between the inside of your eye and your cornea. Some of the fluid from inside your eye has seeped into the cornea, causing your vision to be compromized.
Best case scenario: the hydrops heals and your sight returns to pretty good.
Worst case: they may suggest a graft sooner rather than later. Even this is not so bad, really. When we need a graft, it is good to know that people make donations so that we can see well agaion.
What meds, if any, are you on? Where were you seen? Are you in the UK? I think that in different jurisdictions they adope different protocols when treating hydrops.
It is good that you found your way to the forum.
Andrew
Good to meet you. I am sorry to hear about your hydrops.
I guess that by now you know that this is a slight lesion (a tear) in the membrane that stands between the inside of your eye and your cornea. Some of the fluid from inside your eye has seeped into the cornea, causing your vision to be compromized.
Best case scenario: the hydrops heals and your sight returns to pretty good.
Worst case: they may suggest a graft sooner rather than later. Even this is not so bad, really. When we need a graft, it is good to know that people make donations so that we can see well agaion.
What meds, if any, are you on? Where were you seen? Are you in the UK? I think that in different jurisdictions they adope different protocols when treating hydrops.
It is good that you found your way to the forum.
Andrew
Andrew MacLean
-
jayuk
- Ambassador
- Posts: 2148
- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Mac
Welcome to the forum!
Hydrops can be soemthing that lasts a few weeks or something that can take up to 12 months to heal. It all depends on the size of the tear and also the sensitivity of your eye
With regards to drops etc, I am assuming your Consultant has given you something?.....
People get prescribed various things for hydrops, such as Sodium Hydrochloride, Chloramphenicol and even some pupil dilating drops. There is some evidence to suggest that steroid based drops can actually help heal the tear faster and thus avoid the payload of a hydrop....the scar........however it appears that this practice is more prominent in the USA and other parts of Europe than the UK......
Best case scenario - Heals within 2-4 weeks and all is well...worse case scenario...healing tiem takes alot longer and you get a central scar which then would require a possible corneal graft to remove.
However, the latter is an extreme worse case scenario....
Over the next 4-6 weeks you will get a better idea as to how serious the hydrop is/was..depending on the state and light sensitivity of the eye
HTH
Jay
PS - Also do a search on this site for Hydrops as there are quite a few topics where others have given good advice
Welcome to the forum!
Hydrops can be soemthing that lasts a few weeks or something that can take up to 12 months to heal. It all depends on the size of the tear and also the sensitivity of your eye
With regards to drops etc, I am assuming your Consultant has given you something?.....
People get prescribed various things for hydrops, such as Sodium Hydrochloride, Chloramphenicol and even some pupil dilating drops. There is some evidence to suggest that steroid based drops can actually help heal the tear faster and thus avoid the payload of a hydrop....the scar........however it appears that this practice is more prominent in the USA and other parts of Europe than the UK......
Best case scenario - Heals within 2-4 weeks and all is well...worse case scenario...healing tiem takes alot longer and you get a central scar which then would require a possible corneal graft to remove.
However, the latter is an extreme worse case scenario....
Over the next 4-6 weeks you will get a better idea as to how serious the hydrop is/was..depending on the state and light sensitivity of the eye
HTH
Jay
PS - Also do a search on this site for Hydrops as there are quite a few topics where others have given good advice
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
Hydrops
Thanks for the reply Andrew. I am in Tampa, Fl. treating at the University of South Florida Eye Institue with Dr. Lewis Groden. The only medication I am on is Zymar, an antibiotic drop. I was told after asking repeatedly that there are no drops that can be given to help the tear heal or to help drain the edema from the cornea. After reading some of the past Hydrop messages posted on this group, I understand this is as odds with the experiences of some members of the group who have used a steroid drop or some kind of sodium saline solution. My doctor said he would prescribe the salt water drop if I had pain, but I do not have pain. I simply have a white out in that eye. Therefore, I was told it just has to heal with time. I appreciate any insight you may have.
Thanks,
Mac Greco
Thanks,
Mac Greco
Mac Greco
-
rosemary johnson
- Champion
- Posts: 1478
- Joined: Tue 19 Oct 2004 8:42 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: East London, UK
Hi Mac, and welcome to the forums.
SOrry to hear about the hydrops.
I've had four of the so far.
This is RARE! - apparently people don't usually have more than one in one eye. So having three in my left eye is a piece of extreme individualism!
What can you expect? - well, if it is a total white-out, it will probably take some time to clear. My first two were white-outs and took about a month to get to the stage I could tell the fog was lifting, and about 6 weeks to go away completely.
Best case - the split heals over, the fog (caused by waterlogging clears, and there is little or no scarring, and you can go on as normal.
Better than best - the heal leaves slight scar tissue that is not enough to disrupt the vision, and actually makes the cornea stronger and tougher and reverses - or at least slows down - the effects of the keratoconus.
Worst case: well, I suppose the worst case is that you get a medical practitioner who doesn't know much about hydrops, assumes it always means a graft, and hauls you in for a graft while the eye is still waterlogged and foggy, and the graft result is not too good because grafting waterlogged corneas isn't at all ideal.
From what you have said, they know what they are dealing with and you shouldn't get that problem.
Worst likely scenario: the split heals over, but leaves a lot of scarring in a place where it is in the way of your field of vision and disrupts the vision.
If this happens, a graft (corneal transplant) may be suggested.
It will than be up to you to assess how bad the effects on your vision are, and whether to put up with it or go for the graft.
You might also find that your eye is a bit more sore and sensitive than normal for the next few months, even after the fog has cleared, and your contact lens tolerance is not as good as it used to be. I found with the 3rd and 4th ones that it took about 9 months before the eye (my left one) didn't get lens-intolerant more than I tought it used to do (though I did spend three and a half months in africa in that period, completely raddled with hay fever because I wasn't used to African pollen!)
You might also find that, even if after about 6 weeks or when the fog has cleared, the vision looks more becasue of scarring, it will go on settling down over the next few months. and it is also possible that your brain just gets used to compensating for a slight blur from a little bit of hydrops scar and doesn't worry about it any more.
For the record: my first occurred when I was 18 (during my first Christmas vacation from college) in my right eye, healed over very well and was never any more problem. THe second was in my left eye, and was just before I went back to college at the start of my fInals term (perfect timing, huh??) and healed over but did leave a little scarring. The vision did seem to be a bit blurrier for some months and I can still see a little bit of white cloudiness if I peer closely in the mirror, but after a while either it improved or my brain got used to it and it wasn't a problm any more.
Both these were complete white-outs that took a month to begin to clear and about 6 weeks to clear properly.
The third and fourth were at age 37 and 38, both in my left eye, and both much smaller - only a little bit of fuzziness and soreness. They both healed over OK, though the eye was rather sensitive for some time.
I have yet to have any grafts.
As regards drops/ther treatment: I have to say that opinions vary about this - some medics will prescribe all sorts of strange-sounding drops, and others think these are a waste oof effort, pointless or possibly damaging.
For none of my 4 was I ever prescribed anything other than time to heal and, for the second, some mild painkiller ointment to relieve soreness in the eye. Actually, that wasn't particularly painful, and i only bothered because in those days as a student I got fre prescriptions. If it happens again, I'll go to the supermarket and get some paracetamol and/or ibuprofen - they are much cheaper than a prescription charge!
It sounds like the medics you've seen are on the "nothing but time will really help" school of thought - but it does suggest to me that they know about hydrops, enogh to have come to that conclusion.#
hope yours clears up promptly and completely and leaves no lasting problems. Please do try not to panic - though I do know all too well how much of a worrying time this is, wondering what's going to happen.
Good luck.
Rosemary
SOrry to hear about the hydrops.
I've had four of the so far.
This is RARE! - apparently people don't usually have more than one in one eye. So having three in my left eye is a piece of extreme individualism!
What can you expect? - well, if it is a total white-out, it will probably take some time to clear. My first two were white-outs and took about a month to get to the stage I could tell the fog was lifting, and about 6 weeks to go away completely.
Best case - the split heals over, the fog (caused by waterlogging clears, and there is little or no scarring, and you can go on as normal.
Better than best - the heal leaves slight scar tissue that is not enough to disrupt the vision, and actually makes the cornea stronger and tougher and reverses - or at least slows down - the effects of the keratoconus.
Worst case: well, I suppose the worst case is that you get a medical practitioner who doesn't know much about hydrops, assumes it always means a graft, and hauls you in for a graft while the eye is still waterlogged and foggy, and the graft result is not too good because grafting waterlogged corneas isn't at all ideal.
From what you have said, they know what they are dealing with and you shouldn't get that problem.
Worst likely scenario: the split heals over, but leaves a lot of scarring in a place where it is in the way of your field of vision and disrupts the vision.
If this happens, a graft (corneal transplant) may be suggested.
It will than be up to you to assess how bad the effects on your vision are, and whether to put up with it or go for the graft.
You might also find that your eye is a bit more sore and sensitive than normal for the next few months, even after the fog has cleared, and your contact lens tolerance is not as good as it used to be. I found with the 3rd and 4th ones that it took about 9 months before the eye (my left one) didn't get lens-intolerant more than I tought it used to do (though I did spend three and a half months in africa in that period, completely raddled with hay fever because I wasn't used to African pollen!)
You might also find that, even if after about 6 weeks or when the fog has cleared, the vision looks more becasue of scarring, it will go on settling down over the next few months. and it is also possible that your brain just gets used to compensating for a slight blur from a little bit of hydrops scar and doesn't worry about it any more.
For the record: my first occurred when I was 18 (during my first Christmas vacation from college) in my right eye, healed over very well and was never any more problem. THe second was in my left eye, and was just before I went back to college at the start of my fInals term (perfect timing, huh??) and healed over but did leave a little scarring. The vision did seem to be a bit blurrier for some months and I can still see a little bit of white cloudiness if I peer closely in the mirror, but after a while either it improved or my brain got used to it and it wasn't a problm any more.
Both these were complete white-outs that took a month to begin to clear and about 6 weeks to clear properly.
The third and fourth were at age 37 and 38, both in my left eye, and both much smaller - only a little bit of fuzziness and soreness. They both healed over OK, though the eye was rather sensitive for some time.
I have yet to have any grafts.
As regards drops/ther treatment: I have to say that opinions vary about this - some medics will prescribe all sorts of strange-sounding drops, and others think these are a waste oof effort, pointless or possibly damaging.
For none of my 4 was I ever prescribed anything other than time to heal and, for the second, some mild painkiller ointment to relieve soreness in the eye. Actually, that wasn't particularly painful, and i only bothered because in those days as a student I got fre prescriptions. If it happens again, I'll go to the supermarket and get some paracetamol and/or ibuprofen - they are much cheaper than a prescription charge!
It sounds like the medics you've seen are on the "nothing but time will really help" school of thought - but it does suggest to me that they know about hydrops, enogh to have come to that conclusion.#
hope yours clears up promptly and completely and leaves no lasting problems. Please do try not to panic - though I do know all too well how much of a worrying time this is, wondering what's going to happen.
Good luck.
Rosemary
Hydrops
Thanks Jay. I am sure you saw my reply to Andrew where I indicated i am only om Zymar, an anitbiotic. I was told this is because it is possible one of the beads of water in the cornea can get infected. It seems I should also be on a steroid drop to help the healing. I have confidence in my cornea specialist, but if it can't cause any harm I wonder why he didn't prescribe the steroid drop even after I asked about a drop to help the healing process. I appreciate your help.
Mac
Mac
Mac Greco
Hydrops
Thanks for the support Rosemary. I just have to hope my course of recovery mirrors yours in being able heal appropriately without a graft. My doctor said he would wait three months before even talking about a graft.
Thanks again,
Mac
Thanks again,
Mac
Mac Greco
-
GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
One reason steroids are not prescribed is firstly even the newer steroids are far from suitable for all.
Secondly as was presented at the KC AGM in March by MR Tuft (a consultant at Moorfields) and as so eliquently put by Rosemary, the scarring if not in the visual field can have a benefit as it leaves the cornea slightly stronger than it was and having the net effect of receding the KC symptoms.
In the past, hydrops was deliberatly brought on because of this very process.
Good luck with the recovery.
Secondly as was presented at the KC AGM in March by MR Tuft (a consultant at Moorfields) and as so eliquently put by Rosemary, the scarring if not in the visual field can have a benefit as it leaves the cornea slightly stronger than it was and having the net effect of receding the KC symptoms.
In the past, hydrops was deliberatly brought on because of this very process.
Good luck with the recovery.
Gareth
-
jayuk
- Ambassador
- Posts: 2148
- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Mac
The Steroid drops are a kind of grey area....but I have heard of many cases being prescribed...to increase healing........
As its a very early stage; bind your time and re-evaluate with your consultant in 4 weeks, or whenever you are sheduled to see him next..........
Do bear in mind, that we are all giving our own experiences here thus please do not feel that you may be getting the wrong care....if in doubt pick up the fone or visit the eye clinic!
I did forget to mention, but something Gareth kind of implied, was the KC aspect of Hydrops......on majority of cases of Hydrops the cornea actually flattens and you manage to get a better fit of a lens.......however.....again I must stress that this is not a definite!.......
As you can see...recovery et al is very individualistic.....
Jay
The Steroid drops are a kind of grey area....but I have heard of many cases being prescribed...to increase healing........
As its a very early stage; bind your time and re-evaluate with your consultant in 4 weeks, or whenever you are sheduled to see him next..........
Do bear in mind, that we are all giving our own experiences here thus please do not feel that you may be getting the wrong care....if in doubt pick up the fone or visit the eye clinic!
I did forget to mention, but something Gareth kind of implied, was the KC aspect of Hydrops......on majority of cases of Hydrops the cornea actually flattens and you manage to get a better fit of a lens.......however.....again I must stress that this is not a definite!.......
As you can see...recovery et al is very individualistic.....
Jay
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
-
craigthornton
- Chatterbox
- Posts: 188
- Joined: Thu 30 Mar 2006 6:43 pm
Hi
Have just been reading the above. My hydrops occured two months ago and only last week have I noticed a small amount of periphary vision coming back (i.e. I can see things on my extreme right, but not straight in front or slighly right).
Does this mean it is a "bad" case and will take months to heal and then scar?
Have just been reading the above. My hydrops occured two months ago and only last week have I noticed a small amount of periphary vision coming back (i.e. I can see things on my extreme right, but not straight in front or slighly right).
Does this mean it is a "bad" case and will take months to heal and then scar?
Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 27 guests