Any suggestions for coping with hydrops?

[garnet]

Hello everyone,

I’m new to the forum. I’ve read some of the posts in the past but had my first hydrops on Tuesday and was hoping to get some advice so have decided to become a more active member!

Woke up on Tuesday in a lot of pain and without vision in my right eye. Went to Moorfields hospital who confirmed I had hydrops. I'm still wearing a scleral lens in my right eye which seems to help as wind etc was very painful without it.

I already knew there wasn’t anything I could do about hydrops, but I was wondering if anyone had any tips on making the eye more comfortable? Painkillers don’t work and I’ve become very sensitive to light - even in my left eye, which is okay. It takes me around two or three hours, after waking up, to be able to keep my eyes open without burning. I’ve been wearing a patch on my right eye until it settles down at around 3pm each day. Then if I stay out of bright light (I feel like a gremlin!) I’m relatively pain-free until I take my lenses out again for bed, when it all starts again.

Any suggestions whatsoever would be most appreciated!

Thanks

[red-eye]

Hi Garnet,

I am afraid I'm not able to help you but wanted to just say hang in there and I hope things work out for you. Another member with experience should be on soon.

Out of curiosity, is hydrops the spliting of a cornea? I keep hearing it mentioned on here but not 100% sure what it is.

[GarethB]

Hydrops is where the rear most membrane of the corne tears and the fluid behind gets between the corneal layers.

Some people find there vision just goes blury others find pain is present too. Oddly enough this can result in better vision and stabalise the KC due to the scarring that occurs.

I can understand the Scleral protetcing the cornea, but as you say the sicomfort starts again when you take the lens out, I would suggest going without in that eye. A medically qualified person would be better to comment. By not wearing a lens you will not be stressing the cornea when you put the lens in and out. I know a scleral usualy vaults the corne but you still prod the eye to remove it I think like a corneal lens.

An eye patch might be better for keeping dust out plus it will keep the light out and just wear sunglasses over it as the other eye appears to have come out in sympathy.

When my eyes get tierd and sore I use lubricating eye drops and failing that a cold damp flanel over my eyes is very soothing too.

Hope this helps and welocme to the forum.

[garnet]

Thanks for the quick replies. Moorfields eye hospital gave me the lens to wear - it's not my usual one and they've checked it to make sure it's clear of the cornea so shouldn't be causing any additional problems.

They reckon the pain will go in a week or so, so I guess I just have to wait it out. It is frustrating not knowing when the sight will come back though.

I have an appointment in two weeks to talk about cross linking but I don't think that will be possible in my right eye now. I don't really know much about it except what I've read on here, but my doctor said I could probably only have it in my left eye now. Hopefully if the hydrops heals by itself it'll have the same effect anyway.

If anyone else has had hydrops and has any other tips I'd love to hear them. Thanks again!

[rosemary johnson]

Hi Garnet, and welcome to the forum.
I've had 4 hydrops sof ar, so here goes....
You don't say what type of painkillers you are trying; did the hospital give you piankiller eye drops/ointment, or are you meaning ordinary things like paracetamol and neurofen?
- if you've got special eye drops, try the tablets from the chemist or supermarket; if they aren't doing any good, you could try asking the hospital (or doctor) if they can suggest any eye preparations that might help.
Also, have they given you any other medications, eye drops, etc?
- opinions int he medical world vary as tot he best way to treat a hydrops - some places give you all sort of eye drops, etc, some of which sting like crazy, and others reckon they do nothing, or make things worse if they sting too much, and it is better to leave the thing strictly alone to get on with healing over itself.
The hospital I awas oging to at the time of my second gave me prescription pain-killing eye ointment, which frankly didn't make much difference, and the other three I had nothing for (beyond paracetamol/ibuprofen) and wouldn't have used any of the eye drops some people get given, after previous experience (not that I'm suggesting you should be ignoring medical advice, you understand......!!!! But personally if I have another one, I'd say "no thanks" to anything to put in it... mind, I now couldn't use some of the ones some medics use, having developed hypersensitivity to them).
OK, what else?
I'm surprised you can gt your scleral in! - my (scleral) lens tolerance went right down in the affected eye - after 3 and 4, for several months though they were only small ones. Though I have to say I was putting the lens in for a few hours at a time within in week of the 4th out of dire necessity, as both eyes were too sore.
I did find the pain wore off after a few days, so with luck, yours might too. But pain levels do vary enormously.
You didn't say anything about how extensive it is - is the whole world a white-out, or just a cloud inthe middle?
I have heard of someone being told to point a hair dryer at the hydropsed eye to attempt to dry it out! - that was since my latest one, so haven't tried it, but the person who did seemed to think it worked.
Lastly, don't let anyone talk you into an immediate corneal transplant! - the eye needs to heal over, dry out and stabilise before anyone can tell how the vision will be affected, if at all, whether there will be any scarring, or indeed whether the hydrops has helped to stiffen up the cornea and this could all take several months.
For Gareth: I don't know how you take your lenses out, but I've never "prodded" my eyes to do so! - certainly not sclerals. At least, not intentionally!!!
Good luck! - I hope it clears up soon and the pain lets up pronto. DO keep us posted.
As regards cross-linking - I would have thought that would now be "redundant" in the hydrops-eye - it is probably by now too thin, and that's why it hydropsed. It is certainly too late for it to "prevent a hydrops" which is one of the stated aims of the CXL enthusiasts. And the hydrops could well have the same effect as the CXL in stiffening the cornea - in fact, one of the earlier treatmetns for KC was to induce hydrops precisely for its stiffening effect.
One thing you might like to talk about with the CXL people, though, is the pain and light sensitivity you are experiencing - in case a CXL procedure inthe other eye gives similar results.
Rosemary

[GarethB]

Don't quite understand the lens, but I am sure the hospital knows best.

[garnet]

Thanks Rosemary!

The hospital gave me a new lens that is further off the cornea - my usual one doesn't fit with the hydrops but it doesn't make my vision any better - it's a complete whiteout.

They gave me some antibiotic drops to try to avoid an infection as well but nothing else. They said that painkillers would have little effect because there are so many nerve endings in the eye. They are very good at Moorfields and explained all the options to me - including that I shouldn't rush to make any decisions about a transplant. I just really wanted to hear from people who had actually experienced hydrops themselves. As great as the doctors are, it's nice to hear the thoughts of people going through the same thing.

Although I've read a lot of success stories, I want to avoid a transplant for as long as possible really. Especially since I was getting on so well with the sclerals. I'm 26 now and had hoped to go a lot longer without any complications like this.

I'm still going to discuss cross linking in my left eye but I'm sure I will have to wait until the hydrops has healed completely before going ahead with anything. I'll keep you posted.

Thanks so much for the advice, it's reassuring to hear other people's experiences.

[rosemary johnson]

You're welcome, Garnet!
I wonder whether the new lens is to try to keep the cornea from bulging out "indefinitely" and hence to try to prevent too much more of the fluid from seeping out (which would make it bulge out more). Seems a bit odd, I know, but I've not had any medical input into an active hydrops since 1982 (my second) and never from Moorfields.
This might possibly go some way to explain why it is more comfortable withthe lens in and hurts when you take it out - the fluid starts seeping through again. Hmm.
As for the pain, I can see what they mean about painkiller eyeddrops. Try nurofen, or the like.
I think you'd be very wise to let the hydrops heal over and settle down before having any CXL done - you want one eye working again while the CXL'd one recovers.
as for grafts - well, grafts were mentioned to me at the time of both first and second hydrops - bydifferent people in different places - but it took just over 28 years since the eye that had Hydrops NO 1 got grafted and the hydrops wasn't the main reason. SO no automatic need to go the graft route - depends how well it heals.
I might maybe add that, apart from total panic at the world suddenly going white for no reason I knew of before (!) the worst things about both first 2 hydrops were that the first happened near the end of the Christmas vacation of my first year at university and the second just before the start of the last university term when I was taking Finals (8 3-hour exams in a week, and I spent the first half of the term seeing nothing at all out of one eye, popping round next door to the eye clinic in the infirmary at regular intervals, and not knowing whether I'd be heading straight from my last exam into the theatre for a transplant! To this day I don't actually know if my tutors knew anything about this - and any other place would certainly have been rushing to fill in Special Circumstances forms!
Hope you're not in that sort of a position, at least.
Rosemary

[tneedham]

Hi Garnet

I had hydrops about 9 months ago in my left eye.
I was told not to wear my lens and i coped comfortably (although it was painful) with a patch over my eye for the time it took to heal. it took about 6 weeks although the cloud never completely went away.
i cafrried on wearing the patch until my transplant 3 months ago.
Unfortunately it is just a waiting game once you get hydrops.
I started taking Blueberry Eyebright from a health food shop, its supposed to promote healthy eyes, i think it may have helped my healing??? who knows?

All the best

Tom

[Andrew MacLean]

Hello Garnet

Welcome to the forum. I think with Hydrops you get it and then you keep it until it gets better. Depending on where it is and how much scarring is left behind, I think it is sometimes possible for people with KC to end up with better sight than they had before. Some, on the other hand, end up needing a PK graft if the scarring is too severe and in the wrong place.

All the best

Andrew