I have been diagnosed with hydrops

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vsanders0814
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I have been diagnosed with hydrops

Postby vsanders0814 » Thu 29 Jan 2009 8:11 pm

I have just been diagnosed with hydrops a week ago. I woke up on Monday January 19 and my gas permable contact lens was not allowing me to see out of my eye. I thendecided to close one eye and had no vision in the eye. I immediately called my eye doctor. She informed me that she was unable to help me and contacted a specialist to assist me. I went to the specialist and he told me that I had hydrops. He said that my cornea has been toren and I have a build up of fluid in the cornea. I am taking these two eyedrops :

Muro 128 % 5% (Sodium Chloride Hypertonicity Opthalmic Solution)- Every two hours I used this
Prednisolone Axetate Opthlamic Suspension USP 1% - Every three hours

Muro 128 5% Ointment (Sodium Chloride Hypertoncity Opthalmic Onitment 5% ( Only at night)

I went back to the doctor on Tuesday this week and he said that there is no difference this week than last week. I asked if there were stronger medicines that I could use in order to clear this up faster as I would like to continue a normal life. Saying this, he said there is nothing stronger than he can prescribe to me. I must continue this treatment and it could take months before this does get better.

I have a job and also a conference that I have to attend. I would like to know if anyone does recommend anything for my situation that I can research of try. I work with eye in one vision and also I drive to work. He said that there are patients with hydrops and they drive. I was initially apprehensive about driving and only go to work and to the gym.

Will it really take months before this does fluid does go away? The cornea specailist did say my stage is moderate and that after the fluid is gone then he will be able to judge what my next steps are and if I need to possibly have a cornea tranplant.

Any support or advice it welcomed. Thanks!

I just tried to call another doctor but he is not apart of my insurance Cigna so I will have to cancel that. I was trying to get a second opinion.


Stressed and depressed

Please forgive any typo errors. I am using one eyeto support my vision.

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Re: I have been diagnosed with hydrops

Postby GarethB » Thu 29 Jan 2009 9:25 pm

If you are not confident in driving with one eye don't do. I know tehre are many people who only have vision in one eye and even people here who have to alternate between eyes to get decent lens wear for the jobs, a while back that included me but it did take me a couple months to acclimaise to driving with one eye. My local advanced motorists group and local driving instructor helped to assess if I would be safe.

From the years here on the forum, hydrops has affected everyone differntly.

Bottom line is you have a medical condition being KC that gives you certain rights under the disability discrimination act. As such if I am unable to drive to confrences they organise trains and taxis for me. The confrence organisers have been realy helpful too, I just explain the situation and ask for copies of the confrence notes up front so I can enlarge them to suite my needs. Although this is a bit of a hassle I know that any printouts are suitable for my needs some even send electronic copies up front so I could have the presentation on my laptop at the confrence and seats up front. Some venues have even arranged for someone to be on hand to guide me to the toilets and refreshment areas. A very nice touch but a bit over the top for my needs.

Life can continue, admitedly not as normal as it was but it can atleast be made more bearable. It is very much a case of if you don't ask you don't get.

Don't be afraid to admit you have a disability, most people will admire you for having the guts to admit it and fight it.

All the best.

Gareth
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Re: I have been diagnosed with hydrops

Postby Anne Klepacz » Fri 30 Jan 2009 11:03 am

You'll find a very good article about hydrops on the home page of this website (look under Features) plus some leaflets about KC at Work and How the Law can Help you at Work which you can download and will give you helpful tips on how your employer can help in this situation. There doesn't seem to be anything that can hurry the healing of hydrops, but it will clear and may even give you better vision afterwards so it's not all doom and gloom. The wait for improvement is frustrating, but you will get there. And from what you say, you don't seem to have had the initial pain which can often accompany hydrops, so that's good news.
All the best
Anne

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Re: I have been diagnosed with hydrops

Postby Andrew MacLean » Fri 30 Jan 2009 12:11 pm

vsanders0814

Welcome to the forum, and I am sorry that you join us at such a difficult time.

The recovery time from an episode of Hydrops can vary, but it is never fast. Don't panic, though; it will go away. Many of us have been where you are now, and with sensible adjustments it is possible to get through it all unscathed.

One sensible adjustment has to be your decision about whether or not it is safe to drive. In your place, I'd ask my optometrist for advice. You need to satisfy two conditions:

Firstly, you have to be comfortable that you see well enough to drive.
Secondly, you need at least to match the minimum sight requirement with the one eye that remains good. As Gareth has said, many people manage this with one-eyed vision.

All the best

Andrew
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Re: I have been diagnosed with hydrops

Postby rosemary johnson » Fri 30 Jan 2009 8:31 pm

Hallo vsanders!
Welcome to the forums and sorry to hear about the hydrops.
I've had hydrops so far - this is supposed to be impossible ut I managed it! - so I'll try to pass on some experience.
YOur doctor is right about the cause - a membrane at the back of the cornea ruptures and fluid from the far side of where it was seeps through the gap and waterlogs it.
How long it takes to recover and for sight to return depends on how big the tear is, an dhow long it takes to mend, and on how long it takes for the fluids in the wrong place to be cleared away. These of course depend onthe size of the tear, the amount of fluid to be "moved on" and how efficient and effective your metabolism is.
In my case - my 1st and 2nd hydrops meant the world went almost completely white, like a steamed-up bathroom window when you've just got out of the shower. After about a month the edges were starting to recede - so the centre of my field of view wasstill a white-out but I could see things moving round the edges. after about 6 weks the whole filed was clearing, and it then took a few months to settle down properly.
The 3rd and 4th were much smaller - only a little cloudy bit near the centre - and took much less time to heal over and the mist to clear, but still a few months to settle down completely (I was a bit older by then, I have to admit!)
I have heard of it taking 3 months but this is on the longer end of the scale.
As regards driving: some people drive with one eye, and other reckon it is not safe. And I'm sure some do when they aren't safe and shouldn't. Obviously I don't know your drivin or your eyes - but please, don't take risks! A hydrops may be a few weeks and is a right nuisance, but if you cause an accident because you couldn't see everything you should, that will be with you for ever.
SOrry, sermon over! - I can't and don't drive, but I did used to ride a bicycle and do ride a horse and the main road traffic terrifies me even when it isn't scaring him.
OK, next thing.
Treatment and treatment options.
First, where are you? - I note you talk of insurance companies and of "presnisolone" rather than "prednisone" - are you inthe USA?
Medical opinions on thebest treatment for hydros vary. SOme medics reckon there is nothing to do with hydrops but let it heal in its own good time, and that there is no medication they can give that will help. (SOmetimes they may offer analgesic eye drops/ointment - others (and me) reckon they don't make much difference and stick to ibuprofen/paracetamol (do you call that Tylenol?) from the supermarket.
Other medics think that some medications do help and prescribe them. One treatment that gets prescribed to strong (ie, stronger than natural tears) saline. THe idea is that if the tears onthe outside of the eye are saltier than the fluid inside, this will cause the excess water inside to osmose through the outer cornea to dilute the over-salty tears and then be washed away down the tear ducts, thus getting excess water out of the waterlogged tissues. [Osmosis = passage of water from a dilute solution through a semi-permeable membrane to a concentrated solution until both are the same strength.]
The rival view to this is that the extra saltiness is blinked away too quickly to have much effect - other than to sting and annoy the patient!
Other medications proffered have been steroid eye drops such as prednis(ol)one - they did tell you it is a steroid, didn't they?? - which are used as anti-inflammatories. Gotta admit, I can't remember the reasoning behind this as much og the swelling is likely to be the sheer bulk of extra water. It's main effect may well actually be to counteract the pain and irritation from the over-saltiness of the saline drops/ointment.
In the past, peoplehave been given antibiotics, mainly I think prophylactically ("just in case") - though following from the problems of antibiotic resistance caused by profligate prophylactic and "let's see if it does anythign" use of antibiotics, I think this is less likely now - unless there is evidence of an actual infection too (I've never had an infection with a hydros and don't see any reason to think it likely ... someone may know otherwise....)
I'll leave it to you whether to go with you doctor or to ask about the reason and modus operandi of the meds you've been given.
One other thing I've heard someone say their hospital had recommended was a hair dryer. One of the electric hand-held machines that blows out a stream of warm air, I mean. The idea was to point it at the hydropsed eye - the idea being that if the hairdryer dried out the front of the eye, the excess fluid would come forward to replace it and thus migrate out forwards. It sounds a very odd idea, but the person I heard it from says it worked for them! (I don't know how "severe" their hydrops was.)
As regards future prognosis - your doctor is right that one can only wait and see how well it clears up. Some end up with no significant deterioration in vision and may even be stronger because of the scar tissue formed (indeed, an early treatment of KC was to give people hydrops on purpose for this reason!) SOmetimes there is a bit of scarring, and in a few cases a lot of scarring that affects the vision badly and brings on a strong recommendation for a transplant.
Even after the cloudiness has cleared, in my experience, it can take several more months for the eye to settle down again - during which time the eye was more sensitive and the lens wearing times reduced - and get back to "normal". SO even if they do talk of transplants, don't let them rush you.
In my case, the "Professionals" were mentioning transplants around both my first and second hydrops, but they oth cleared up well enough that the possibility rolled away.....
..... for another 28 years at least, but that's another story!
Hope yours clears up promptly and heals over well, and you're back to normal soon.
Rosemary

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Re: I have been diagnosed with hydrops

Postby rosemary johnson » Fri 30 Jan 2009 8:40 pm

PS to the above:
as regards work and conferences - it's amazing how much shock and sympathy you can get from letting out the news something horrible is happening toyour eye - accompanied or not by technical details and/or an eye patch (pink medical or black with skull and crossbones).

DOn't knock it1 - go for it, even. I mean, if you'd fallen off a horse and were hobbling orund on crutches iwth a broken ankle, wouldn't people be ready to help out at conference centres and the like? Well, you're injured.
You might also like to have some dark glasses handy - if you aren't more than usually light sensitive now, it might get more so as the fog starts to clear.
Rosemary

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Re: I have been diagnosed with hydrops

Postby vsanders0814 » Fri 30 Jan 2009 9:22 pm

Thanks for all of the advice and assistance. I tried to get a handicap sticker and the cornea specialist told me that I was unable to get that and he would not sign it because the vision in my right eye was not that of the vision in order to get a handicap sticker. I am interested to know if someone can assist me with getting information on disability. Can you please tell me exactly where I can get that. I live in Atlanta, Georgia. I am going to another doctor on Tuesday also to get a second opinion on what my options are. This doctor is famaliar with kerataconus and I would just like to hear what someone else says also. I only drive to work mainly and the gym. I do not intend on driving really at night and not when it is raining. The doctor did tell me that there are patients that do drive with this and he did write a letter that I could use for my employer to only drive during daylight hours. I will indeed take the advice when I have to attend the conference in March and ask for assistance and make sure also that I get some help getting around and making sure the information is legible for me. The doctor also said that my brain will eventually know that I have vision in one eye. I do suffer from headaches and times and wanted to know if that common for anyone else. I am using the steroid drops, Murino drops and Murino ointment as recommended by the doctor. This is VERY frustrating for sure. Someone also mentioned that there was so additional information where I could read some articles. If you can please tell me the EXACT path on where I can get that information from then that wouldbe most helpful. I am not sure how big the tear is in the eye and when I return to the doctor he did mention that my case of hydrops was moderate. I am not sure what that means totally. I did some research and that seems to be the second level to what is considered severe hydrops. I just do not know how I woke up one morning without any symptoms or signs and this just happened. Was it something that could have gotten in my eye at night, rubbing my eye. I do not understand how this happened especially when you are asleep at night your eyes are resting. I would have thought that something like this would happen at least when your eye is open and you are awake. I do not reallt have any pain associated to this and I agree that it one part that is in my favor. I am truly thankful for that. When I drive and it is sunny outside I do wear sunglasses also. Thanks to everyone that did respond to my post. I sincerely appreciate the knoweldge being shared to me and more important speaking to someone that does understand. Often times people think that everything is OK and it is not and you deal with the circumstances as they come. I hope to hear back from someone with this post and to get clarity on where I can obtain the additonal information I requested about. I hope that everyone does have a great day and an awesome weekend.

Regards,
vsanders

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Re: I have been diagnosed with hydrops

Postby rosemary johnson » Fri 30 Jan 2009 10:04 pm

Hi again.
I'm afraid I'm not an expert on disability issues in the USA - other than to know the name of the Amaericans with Disabilities Act, which is your equivalent of our Disability Discrimination Act. Do you have a local branch of the ACLU (American Civil Liberties Union) or... I think it's AFB?? (American Federation of the Blind). Maybe they could advise. I'm sure there must be organisations of people with disabilities who have all the info on this.
As regards what causes hydrops - my latest understanding is that "No-one knows". They just happen. There have been various theories - some people suggest eye rubbing, or even stress - but no-one knows for sure. There are quite likely a range of possible causes or factors.
BTW, note that what you see is the cloudiness when the cornea has become waterlogged and the flid fogged the vision. The actual tear in the membrane could have happened a while before the quantity of fluid that has seeped through is enough to notice. HOw long? - I don't know. Depends onthe size and shape of the tear.... but think of a dripping radiator turning the carpet wet, rather than Katrina breaking the levess of New Orleans.
As for how big the tear: no-one's going to know that until is has healing the the cloudiness cleared away, and they can see the tera (or the scar where it has healed) through a slit lamp. The classification of mild/moderate/severe till then will have to be absed on looking down the slit lamp at the cloudy patch.
Headaches: yeah, all too common, trying to cope with imperfect vision, and/or vision markedly different in one eye from the other. Alas.
Rosemary

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Re: I have been diagnosed with hydrops

Postby Anne Klepacz » Sun 01 Feb 2009 11:45 am

Our home page is www.keratoconus-group.org.uk That's where you'll find lots more information.
Anne

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Re: I have been diagnosed with hydrops

Postby vsanders0814 » Mon 02 Feb 2009 5:14 pm

Hi Rosemary,

Did the person really say that putting the hair dryer helped them to dry up the hydrops? I wonder if that would help me. Does anyone else have any comments on this or have you heard anything similar?


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