Scared - first Hydrops experience!

[rosemary johnson]

Hallo Craig, and welcome tot he hydrops club!

You asked whether having had one, they would become regular events: no, probably not. It is apparently very rare to get a hydrops more than once in the same eye.
Having said that, i've had three in my left eye now. I'm apparently very rare!

If you could still see through it, it sounds like it isn't too bad. My first two (ie the right eye, and first in left eye) were complete white-outs - the world looked like a steamed-up bathroom window and I couldnt' see a thing thorugh it. This tends to be the experience of people who post on here with a hydrops.
The second and third in my left eye were more like what you describe - cloudy vision. And the eye rather sensitive and less lens-tolerant than usual.
If it is less severe, that sounds good for the prospects of it healing up - that is, it will take less long to heal over and the clouding to dissipate than if it was bad enough for the world to be a white-out. It's also quite likely it is milder because there as a smaller split and less fluid getting through. Again, this may be a good sign for it healing with less scarring.

As others have said, no it doesn't necessarily lead to a graft. If the split heals over reasonably well, and doesn't leave you with a lot of scarring you can't see through properly, there's no reason to graft.
My first was January 1980, and I haven't had a graft yet! - despite it being mentioned at the time as a possibility.

As regards the drops - opinions in the medical profession vary! - Moorfields reckon that they don't do any good, and may do harm, and don't prescribe anything. The only thing I've ever been prescribed for a hydrops was (in Oxford) a general eye analgesis ointment. Why, I don't know, as that one wasn't particularly painful!! - and in later years (ie. when not a student and getting free prescriptions - I wouldn't bother as aspirin is far cheaper.
Sodium chloride is the chemical name of salt - yup, the stuff you put on your chips! It is said to be prescribed in the hope that osmosis will draw the water from the corneal tissues out into strongly salty tears and thus reduce the swelling. the effectiveness of it in doing so has been questioned. Salt does also have mildly antiseptic properties - but also it does sting! You know that old expression about "rubbing salt into the wounds"? - well, it might do something to keep the infections at bay - but at the cost of the patient breaking the nose of the first aider rubbing it in!
One reason I've heard for the dilating drops is that, if the fogginess from the hydrops is obstructing the central vision, then making the pupil wider may enable the person to see *something* round the edges of the cloud. As your vision is not blocked but only misty, this is clearly unnecessary. Also, having a dilated pupil makes the eye more light sensitive,a nd people with KC have problems with light-sensitivity and pain from bright lights anyway! - and a hydrops can make the light sensitivity worse anyway.

As I said, medical opinions vary, so do ask your consultant(s) for their reasoning. But as a veteran of 4 hydrops, I personally wouldn't put any of them into my eye if I had yet another.
As for steroids, I pump more than enough of those into myself anyway, and I'm sure the horse I ride would love me to be without them and finding it easier to lose weight!

About recovery times: the worse it is, the longer it takes - that is, the bigger the split, and the ore fluid waterlogging the tissue, the longer it will take to heal over, and for the waterlogging fluid to disperse. With my two white-outs, I found it took about a month for the white to disappear before I could see out again. The fourth one, there was just a bit of mist across the middle, and I had a lens back in the eye within a week - but that was not ideal, as it was far from comfortable and wouldn't stay for any length of time, but the other eye was even more sore after having to do so much more of the work.
As a general rule, one might sy that making any decision about grafting or not in under 6 weeks is rather premature. SO an appointment in early May sounds about right.
In any case, the graft itself shouldn't be done till the split has heal and the aterlogging dispersed.
You might find that the eye tends to be just a little more sensitive, and lens tolerance/wearing times are a bit worse than they used to be for several months, even though the vision has returned. If your other eye is doing so much more of the seeing anyway, this shouldn't be a problem, but it may help to be aware of it.
you might also find that the vision looks a bit "not quite" for a while, and that slowly gets better over a few months too.

Good luck!
Rosemary

[craigthornton]

Thanks, I think the people who think making the pupil wider makes you see "something" are wrong! I know once I had dilating drops in both eyes at an appointment, and had to call someone to fetch me as I could see nothing!

With the right eye now, using the dilating drops don't help, but I'm using them as they've been prescribed.

Does anyone find even with the cloudy vision, their good eye seems to make up, and although you know the cloudiness is there as part of your overall vision, your brain seems to get on with the job in hand. Hope that makes sense!

[jayuk]

Craig

Yes, that is what happens..the brain is a clever little thing! (little in my case! )..and it basically blocks out the cloudiness over time.......and then ull realise that IF you have a graft it takes time for the brain to recognise that it can now get vision !

J

[Geraldine]

well i had a mild hydrops in my right eye in eater 2003..thats how my KC was diagnosed[parents thought i had a cataract cause of the white glint in eye] fortunately it was only mild hydrops and KC

my other eye was diagnosed with early KC so that was part why i had the graft[specialist rekoned other eye would be gone by the time my two year healing and year wait for graft was up which is now]

in the eye casualty i could barely count fingers[didn't have visual correction in that eye till i got glasses 4-6 months post graft] by the time i had my graft 9 months later i could read the first letter uncorrected...hence i wonder if i really needed graft[i know people who could only see 20/200 with rgps going for graft]..no drops were needed in my case just told to go to eye specialsit six weeks later to discuss treatment for my KC[contacts or graft i was told] which was when i was told i had had [mild acute]hydrops episode

so i guess i was lucky

[Ali Akay]

Jay
I am sorry but I havent come across the use of steroid drops for hydrops.As steroids increase the risk of infection (as well as other possible side effects) I wouldnt think they would be a good idea for hydrops as it's essentially not an inflammatory response.The most common treatment is hypertonic saline (5% sodium chloride) drops or ointment (ointment is better).This helps to draw water out of cornea by osmosis but it's doubtful whether it actually has much effect. Nevertheless Craig can be reassured he is in good hands.

The thing with hydrops is that symptoms vary greatly.At one extreme (rare) the eye can be very painful needing eye pad or bandage contact lens and analgesia.At the other extreme the patient doesnt even realise he/she has had hydrops and it's only picked up at routine after-care.When questioned patient would remember having some discomfort in the past which he/she didnt pay much attention to. This is more likely if the other eye has good vision as patient may not have noticed blurred vision.The common scenario is that patient notices the white/bluish scar and seeks help but the eye isnt particularly uncomfortable. Some ophthalmologists prescribe antibiotic drops if they feel there's a particularly high risk of infection. As Rosemary says probably doing nothing and waiting for it to run its course is as as good as anything!

[craigthornton]

A I right in presuming if the hydrops does leave a scar, then your vision afterwards is partly obscured by a small line or similar?

So you would then have to have a transplant?

[jayuk]

Craig

If the scarring is more central and affects your corrected vision; than the decision to have a graft would be in your hands......once the cornea has healed and settled back....you will than need to decide if you can continue on a as is basis....OR...opt for a Graft; or one of the emerging new treatments which can potentially remove superficial grafts on the cornea.

Ali - I am glad you pointed the steroid issue you; this indeed is something that occurs more often than not in the USA post hydrop...for some strange reason Opthams their do actually prescribe them to heal the tissue faster and potentially allow for less scarring. However, in the UK I have yet to meet anyone who was prescribed anything other than SC and dilatng drops. I agree that the osmosis issue is up for debate; as I questioned this myself when I was at Manchester Eye Hospital ...but I didnt actually get a response that had any logic behind it...aside from "thats what we prescribe".

J

[Geraldine]

mmm from what i read it depends on if amount and location of scaring after the hydrops

i remember reading of cases where contacts worked better after hydrops ..but if you have severe scarring as a result of hydrops then yo will need a graft..

i guess hydrops can leave significant scarring that needs a graft but often does not

when i read this after i became very active on KC boards[a few months post graft[ it really made me wonder if i needed a graft . i though the hydrops was why i needed the graft but actually that may not be the case as after the hydrops cleared my vision improved so much i could see the first letter uncorrected[same as with glasses and pinhole]..to this day i have my reservations[two years post graft] and tend to feel guilty i had a unnesicary graft when somebody else with worse vision could have gotton it

[Andrew MacLean]

Craig

as you can see recovery and rehabilitation after hydrops is an individual thing. If the tear in your endolhelium is periphjeral, it may be that you will recover with no marked effect on your vision. But in the meantime you hve the longish period of recovery.

All the bst with that

Andrew

[craigthornton]

Am struggling a bit today with the bright sunshine, will have to get myself some decent sunglasses! I've been fed up with the long winter and the week that Spring comes, I have to go and have a hydrops!!!