Hydrops

Corneal Hydrops is a nasty complication resulting from Keratoconus. Thankfully, it is a rare one (one site says only 3% of eyes with Keratoconus get it, which makes the prospect of getting it in two eyes pretty remote). It can occur at any time and with no warning, though it is more common among advanced Keratoconus patients (i.e. those unfortunate enough, like me, to have very steep corneas).Corneal Hydrops early stages

A Hydrops occurs when one of the internal layers of the cornea (there are many layers of cells) splits and fluid from the eye enters the cornea. This causes the cornea to swell and become cloudy and white.

Here are some examples of what this will look like. Click here.

Levels of cloudiness vary, but many people have a complete white out of the eye, so it looks like a white marble. This can be quite alarming both for you and others, but you get used to it. You can also get a lot of pain with Hydrops. I have had one in both eyes, two and a half years apart. The first I had no pain with, and the cloudiness was very bad. The second was horrendously painful, but less cloudy.

Obviously, the affected eye is rendered pretty much blind while the condition is at its worst, but your brain adapts quickly to seeing purely through one eye. With the first, I did not miss any time off work because of the condition and I was working as a sub-editor on a magazine, so you can see how quickly you can adapt! However, with the second, I had a day off with the pain, and then two more days off to get used to seeing out of my left eye, which was affected by the scar from the first Hydrops (in certain lights I can see perfectly, in others very poorly, because light hits the scar.)

The most difficult time is actually when you begin to be able to see out of your eye again as it recovers and vision begins to return, as your brain begins to try and use that eye once more. This can make you feel quite dizzy and disorientated. I can recommend a pair of sunglasses with piece of cardboard stuck to the lens that covers the affected eye. An eye patch, basically, but one that does not draw attention to yourself!

There is no real treatment for Hydrops. You just have to sit it out and wait for the swelling to go down and the fluid to drain away. Steroid drops can help reduce the inflamation and sodium chloride drops can help evaporation (apparently). There are other methods people have used that you can read in the comments below, but personally I have found patience to be the best policy. Recovery is down to each case, my left eye is back to full vision with a scleral lens and that took around a year and a half, my right eye is still progressing and that is nearly two years on from the rupture of the cornea. Like everything with Keratoconus, everyone is different. Patience is a must. Despite nothing seemingly getting better for months you can suddenly have a week where your eye gets better massively. These long lows and brief highs were common in my recovery period.

As the eye recovers, you begin to see where the split in the cornea occurred, as the cloudiness recedes into one particular area – the place in which the break in the tissue happened. As with any other cut or tear, a scar is left as a reminder, but in this case it looks like a mini cloudy milky way star collection on your eye ball. If this scar is off the centre of your eye, you are very lucky and vision will probably return to normal pre-Hydrops levels. In some cases, it can be even better, as the healing process from a Hydrops can flatten the cornea, making it easier to fit a contact lens.

If the split is over the centre of the eye, however, then there is nothing you can do with lenses to correct the problem. The scar will inflict itself on your vision by clouding it (this is because you are looking through that Milky Way constellation I was telling you about). You can read in the My Experience tab all about how much/little I can see with my Hydrops.

One thing I can recommend for everyone though, is that you wear dark sunglasses as they reduce the glare and the amount of light entering the eye, making your pupil bigger and the scar less of a factor in your vision.

As the cornea recovers, Scleral lenses can be fitted. These sit on the Sclera (white bit) of the eye and do not touch the cornea, allowing it to heal.

Even though my own Hydrops episodes were major ones, I have been fortunate in that my left eye is now less steep than previously and that, depending on light conditions, I have very good vision from it, much better than before. So, though if you are unfortunate enough to get a Hydrops episode the doctors will probably give you the worse case scenario, don’t get downhearted and stay positive. It might be that you are one of the lucky ones and that it is the best thing that could have happened to you.

Here is my left eye at one month after the hydrops, you will notice that you cannot see the pupil at all and the cloudiness covers the whole of the iris:

hydrops-one-month1

Left Eye One Month After Hydrops

Below: My left eye after 14 months, the scar is clearly visible on the right-hand side of the pupil, but has reduced dramatically compared to above:

hydrops-scar

Left Eye 14 Months After Hydrops

Below: Left eye after 28 months, scar can be seen lower left of pupil (7 o’clock position on pupil)

Left Eye 28 Months After Hydrops

Below: My left eye after just over four years

Left Eye Nearly Four Years After Hydrops

Below: Four pictures of right eye after two days (in the first image the pupil is dilated from eye drops)

Right Eye Two Days After Hydrops

Right Eye One Month After Hydrops

Right Eye Around 10 Months After Hydrops

Right Eye Just Under Two Years After Hydrops

163 thoughts on “Hydrops

  1. Keith says:

    I was just recently diagnosed with corneal hydrops in my left eye, it was a very scary quick onset. It is in the left hand area around 7 oclock. I visited a well know opthalmologist and he said I should consider thinking about a corneal transplant. I was scared and down on myself. I am a dentist and I really need to see as do all of us. I am presently on a saline drop and ointment at night routine I also am using a steroid
    and antibiotic. I can wear my lens without any pain or discomfort. I really need to wear when doing long procedures because my right eye is 20/50 corrected at this time. I am at the time to get a new set but I have to wait it out for now. My opthalmologist is going to see me this friday and advise. The transplant surgery thing scares me. What Dr related answers did you receive. It sounds like your hydrops were worse than mine. I also hope this doesnt get any worse.

  2. keratoconusinfo says:

    It depended on who I talked to to be honest. The first doctor I spoke to said Corneal Transplant was my only option. The second said it was my decision. And the third said the contact lens route should solve the problem. I realise that is pretty unhelpful to you, but what it does show is that you should never take one doctor’s opinion as golden. Get as big a range of options as you can.

    You are in a slightly different situation to me as you are more reliant on your eyes for work than me, but I would still advise patience. I doubt very much your problem would get worse, as after the initial onset the scar heals rather than worsens. It sounds like your doctor has you on a lot of medication for it also, so it would be very unlucky for any further damage to be done.

    I had no treatment on my hydrops. I just simply left it. I did not put a lens on it for around 9 months and experienced no discomfort at any point from the condition. Improvement wise, it was minimal for around 3-4 months, and then my site began gradually returning. It is now 15 moinths since my hydrops and it is still getting better slowly.

    The doctors are now saying it is a remarkable recovery in that I can achieve very good vision out of my left eye in the right light (be it a slightly hazy vision lacking colour definition). I would try using dark sunglasses and seeing if that improves your vision at all. The reduced glare can be very beneficial for hydrops in my experience.

    So best of luck Friday and please do keep the site up to date with your progres as it would be interesting to know how your treatment progresses, especially as your initial treatment is very different to mine. Also, Ensure you try your eye out in all light conditions, with squinting, with glasses, whatever you can, as you may stumble on an effective solution yourself.

    Best of luck, stick with it, and hope to hear your progress soon!

    Jon

  3. Keith says:

    Well I m back from my visit and at first I thought I was gonna cry until he brought in his partner who is a corneal specialist. He basically said to be patient and my healing will take time. He did mention that my vision may improve as time heals the hydrops and the cornea flattens, he was more patient and less I need the transplant type. I am slightly in that the hydrops is in the lower cornea and not in the middle of my pupil. I am still on saline drops prednisone and an antibiotic which has been decreased to 1x a day. I still need the ointment at night. I did tell them that i cheated and put my lens in for a patient or two and I needed it to drive at night. I was nervous . I was told by both this may be a stable thing and I could wear my lenses from time to time but if the condition worsens the transplant issue arose again. I have disability but not to work for 3-6 months scares me and the ability to provide for my family. Do you know of anyone who has had a transplant? And if so what series of events transpired. I am also lucky in that I live in South fla and Bascom Palmer is just 45 mins away so if I need another opinion I will see someone there. My nexr appointment is approx 2 weeks from today.

  4. keratoconusinfo says:

    Sounds positive to me Keith. They have told you pretty much what they told me and as you can see from the pictures above the swelling goes down, it just takes a long time. What contact lenses are you using now? They recommend Scleral lenses here in the UK for Hydrops so if you aren’t using these you might want to ask about it. You can read about them on the other tab. They are a bit intimidating in size but they are really comfortable after a while.

    I don’t know anyone who has had a transplant, no. I am intimidated by the thought of one myself, like you. It is a very individual decision. Some people have one asap and take the risk, others try all lens options out first until they hit a dead end. I am doing the latter.

    Be patient, keep trying it out, try the dark glasses and see if they help, and good luck! Let me know what they say in two weeks. Will be interesting to see if the treatment you have had will make your recovery a speedier one than my own.

    On a side note, good to hear you are driving ok. my vision is sadly not good enough at present!

    If you have any pics of your eye and want to show people where your scar is at the moment so they can chart the progress, just email me over a pic via the tab on the right. Don’t feel you have to tho! Likewise if you have any useful links for US readers that I can stick on this site.

    Cheers

    Jon

  5. Keith says:

    Well here is the latest from my perspective. I have been wearing my RGP lenses to work and I feel pretty comfortable. The cloudiness seems to me to be less than the day I first noticed it. My lenses are pretty comfortable and I feel good. The sunnt days are interesting but wearing sunglasses helps. I am starting to fell better and not as scared as once thought. I am still seeing the opthalmologist this thursday.I havent missed 1 medication to date. I am hopeing for a good exam this thursday and I dont want to hear any transplant concerns from him. I was told to run for another consult if he pushes the issue.

    So how are you doing? Is there any progress? What is your future game plan? Keep me informed as I will do with you.

  6. keratoconusinfo says:

    Sounds good Keith. Am encouraged that you are able to wear your RGP lenses already for long periods. Also great to hear the cloudiness is beginning to go already. The medicine seems to have progressed the healing process alot quicker and so perhaps I should have been given a similar treatment!

    As for my eye, it is still getting flatter it seems. The left lens is beginning to get lose again (generally meaning it is getting flatter) and the cloudiness is reducing each day still. Not sure how much clearer my vision is going to get, but in bright sunlight I can see way more than I could 6 months ago. The scar itself looks a lot smaller also.

    As far as future game plan goes, I think i will give it another six months and see what point the eye is at then. My hope is that it will be functional enough for me to rely on, as my right eye is really steep now and so am fearing a hydrops in that eye, which would obviously not be ideal! So it is still a wait and see game unfortunately.

    Hopefully your eye will have a much quicker healing process than my own, as the measures your doctor took seem to have sped it all up already.

    Out of interest, how steep was your eye when it got the hydrops? As in, were they truggling to fit with you RGP lenses? Mine came when the eye was steep enough to make RGPs tricky.

  7. Keith says:

    Hi there well I am jumping for joy so it seems. I just got back from the Dr and he says it appears to be better . It looks like a 30% reduction. I am still wearing my RGps and I can work just fine. They reduced my drops to prednisolone to 2x day for 1 week then 1x day the next then done. The muro is still 4x a day and I no longer need the vigimox. His only concern is where the scar will develope, he hopes it is not in my central region. it is more to the 7 o clock position he is hoping for. I am able to see 20/40 with my lense and he is happy with that. In 1 month I return for a follow up and I hope he says good things because I am eager to get fitted for new lenses.

    In answering your questions I do not know how steep my cornea is from the edema. Pre or post I spoke to my optician and she says she can fit me in my right eye for a new lens to get it off my cornea. I think at this stage we both need more frequent rgp lenses so we do not fall into this situation again. So I am running in a month to get a new set or a lens if I need to wait longer . What does your Dr say have u been seen recently? And how often do u get lenses I need them every year. The web research I have been doing states at our stage we should see our Dr at least every 6 months. Keep me posted.

  8. keratoconusinfo says:

    Hey keith, apologies for the delay.

    My doctor basically says the eye is still healing and their is potential for the scar to get smaller, tho how much smaller they cannot really say.

    Lenses wise, they reckon they can continue to fit me with scleral lenses (those that do not touch the cornea) for a bit longer, but it is getting harder and harder to do so because my right eye is so steep now. The right eye is also distorting the images quite a bit so they are trying a lens/glasses combo hoping that they can get light through the eye onto one spot. so far, these attempts have just given me double vision however. Next appointment 26 April at the refraction clinic. I see a doctor pretty much every two-six months. But as i see separate people for refraction, contact lenses and the cornea, then i tend to go a lot! Next appointment with the surgeon is June. Hoping he will advise i continue as I am, as though my vision is too bad to be able tod rive legally, I can at elast work and get along, which is preferable to an operation in my book!

  9. Keith says:

    Today seems amazing for me I see so much better than I can imagine. I am still using Prednisolone 1x aday now and the NaOcl drops 4x a day . Things apperar sharper than before. I hope Im not imagining it. The Dr thinks that if the cornea flattens out my vision can improve pending where the scar develops. I still have a minute amount of cloudiness but it does not affect me whatsoever. I think about what you are going thru as well everyday and I only hope and pray for both of us that this gets better so we can avoid the GRAFT word. I will keep u informed as much as I can and I hope you do the same. I have a picture that I can scan and upload to show you where my hydrops developed. I will get it to u soon. Hope you are doing well

  10. VINOD says:

    Useful Site – Thanks
    I have the Hydrops from teh past 1 week. I’m a KC patient for the past 10 years, with my left eye already transplanted, butrejected graft, Having the hydrops in my Left eye now, scares me that I am walking into the world of darkness

    Fortunately, the hydrops are on tehfemoral/interior of the cornea, and center seem sto be clear. I do wear a scleral lens, and can manage the routine activities no.

    My question is, the hydrops spreads over teh cornea upto what time? a month ? or more?

    I have may be 10% of the cornea affected no, for the past 1 week, and didnt see a vast spread in these days (since I ever noticed it) – So, is it stable now? or it can spread any time further??

    With 1 week old Hydrops, I have a slightly hazy leftside vision, but, manageable.. only worry is that if this is going to be spread all over the cornea in the future –

    Reg teh medication, I have a prescription from a doctor as below- I copy it here

    /For your hydrops you can start using Hyerson eye drops 4times per day and Hypersol eye ointment at bed time. and some tears substitutes, if eye is inflammed you can use mild steroid like FML ( Flurometholone eye drops 1-2 times perday) and to keep the intraocular pressure slightly low so that fluid entering the cornea can be reduced like Timolol maleate eye drops 2 times perday/

  11. Keith says:

    I did not notice any spread of my hydrops. I have since forgotten about mine because I can see absolutely clear as can be. I even think I have a super vision because I see so sharp and clear. My lenses amy be to strong. I am going to see the Dr in 2 week and i will know more. I want new lenses. I don think the hydrops spread from the research I ve done so that may be a good thing. Do you have allergies/ How old are you? I too am on the same meds as you. I recently stopped my steroid med as per my Drs instrs.
    Keep me posted. So did you have a second transplant? and why did u need it originally? Did u wear RGps and how well did u see.

  12. VINOD says:

    Hi Keith,
    Thanks for teh response, glad to know that Hydrops doesnt spread, I hope for it/ I am 34 Yr old male

    My right eye was transplanted in 1998, and got graft rejection, due to infection! Did teh regraft in 1999, but still have a opaque graft, but far better than the first graft. I might try teh third graft soon

    My left Eye was developing keratoconus or=ver these years, and tried many RGP’s, I dont have any allerigies, but teh corneal steep was quite big, and had the RGP pops out very often! It was then I decided to go for teh scleral

    I use the scleral now for 8 months, comfortwise its perfect- never pops out of the eye-

    But I read somewhere that Hydrops are more common in those who used scleral! Any truth in it?

    Now, I have the hydrops (1 week old) and slightly hay femoral/inferior vision, \ My right eye is already opaque withe the past regraft, so, I am off the work now for 2 months.

    One of my doctors said, hydrops doenst have any medication.. all those prescribed are just for teh placibo effect!

    Also, after teh ehydrops, you might have to change your expensive scleral lens changes, as the power/fit of it changes!
    I have a 10% of cornea affected with hydrops for the past week.. I can still manage with this vision, if it doesnt spread over the left eye ..

    I might try a regraft on teh RIGHT eye soon- Keep in touch

    Answer to ur last Q: Since 1999 I am wearing the RGP for my left, and the vision was very good- I had 6/6 almost and the problem was those lenses were poping out very often due to teh steepness- Now with teh Scleral, that problem is solved- But personally I think RGPs gave me a crispy vision in teh past

  13. Diana says:

    Please email me, so that I can connect my daughter to this site. She is 35 and was diagnosed with keratoconus at age 15. She needs to be in touch with others to share, but she doesn’t know it yet.

    I wish I knew how I found this!

    Duh!

    Thanks,
    Dana

  14. keith says:

    i need ur email address

  15. Diana says:

    Duh again! (smile)

    Hi Keith, My daughter Virginia’s address is maxi_care@hotmail.com

    My address is dlmpc@bellsouth.net

    I had a parotid tumor in 08 and I felt so isolated until I found a forum like this.

    I told Ginny that I’d found your site. There’s nothing that compares to someone that can relate to what we’re going through.

    Thanks so much,
    Dana

  16. keratoconusinfo says:

    For those in the US, and elsewhere in fact, might be worth checking out Dr G: http://globalrefractivesolutions.com/wordpress/

    His surgery is here: http://leukoma.com/

    I don’t do links to individual practices as a rule, but Dr G provides some very useful info and comes with a recommendation from a good friend. So this is the one and only exception!

  17. Shais says:

    Hello so whilst I was washing the dishes all of a sudden my right vision blurred just been told today that I have hydrops my doctor said it would take up to 8 weeks to dry and has given me sodiem chloride and said depending on where the scar is then will decide on the cornear transplant now that just got me scared hearing the words operation…

  18. Jon Severs says:

    8 weeks? In my experience that is far far too early to make any decisions. Mine took around two years for the first one and the latest in the right eye is still improving all the time 8 months later!

  19. Bhuvan says:

    Hi, I felt my right eye cloud up this past Sunday. I have had kerataconous for the past 11 years, since the age of 16.My Kerataconous is very advanced, especially in my right eye, where I cannot do without corrective lenses. I have been wearing the Boston Scleral Lens and they have been helping me a lot.

    I just moved to Melbourne, Australia a month ago, to start a new business. I went to see an opthamologist here on Tuesday. He confirmed I have Hydrops and scared me saying that a corneal transplant may be necessary, but told me that we should wait till the corneal swelling goes away. The Doctor has given me Flarex Eye Drops, which is a steroidal eye drop to put 4X a day to help numb the pain. Its only been a couple of days since the hydrops began, but every morning my Right Eye throbs with pain and its difficult to keep them open. I have resorted to wearing sunglasses throughout the day and taking aspirin, which helps in a little. How long does it take for the swelling is come down and how long for will i have this throbbing pain?

    Fortunately my left eye is strong and i am able to wear my scleral lens in that eye, so I am able to continue with work, however it feels so wierd not being able to see out of my right eye, and I do feel impaired by it.

    According to a lot of posts, i’ve noticed that the hyrops takes a long time is go away, but is the pain temporary or does it take just as long??

  20. Jon Severs says:

    For me, the pain lasted around two months with the second hydrops, tho this was controlled with the steroids – basically as long as i had the steroid drop in it did not hurt. The first hydrops I had did not hurt at all!

    As I said before, it depends where the scar settles as to whether you have a transplant really, you just have to sit and wait. You get used to seeing out of one eye tho, your brain adjjusts. than as the sight comes back, you have small periods of dizzyness as your brain adjusts to the increased vision.

    Best of luck, my left eye is still improving after 2 years and my right is getting better all the time after 8 months.

  21. Vinod says:

    Hi Bhuvan, Dont worry, Hydrops can be a blessing in disguise.. It strengthens your cornea. In many cases the KC progression stops after teh Hydrops. I had it in March 2009, it lasted for 6 weeks, and settled with some scars.. but luckily the scars were not in teh center so it didnt affect my vision.

    There was some pain for the first 3-4 weeks.. but I had a very good doctor to support.. I used hypersol drops/ ointment
    It was a terrible 2 months..but, think positive… it is going to clear in few weeks.

  22. Bhuvan says:

    Thanks for the support. I really feel it helps when I hear other people that have had hydrops and are getting through it without many issues.

    Traveling and driving around is a big part of my work and Im getting scared that without my right eye, driving at night is going to become impossible. Even when I try driving during the day, i don’t have the necessary depth perception to make proper judgements on the right side of the car.

    My doctor tells me it is ok to put my scleral lens in my eye once the corneal swelling goes away, but how do I know that the swelling goes away. I don’t feel any pain anymore but I am afraid of putting it in and worried that something else may go wrong…any experiences with this problem?

  23. Jon Severs says:

    I waited until the docs ok’d my eye to have a lens in. That es last week after a hydrops in February, so around eight months. I can see fourth line down unaided now without a lens.

    As for driving, I have the same problem at night, the light splintering is real bad. One thing that can help is wearing glasses on top of the lenses. My scleral helps most of the way then I have some glasses on top with a refraction in them, it really helps. Ask your doc to try a refraction on top of the lens and if it works get yourself some glasses

    Good luck!

  24. RR says:

    Afternoon all,

    Firstly, thank you for writing about this in such detail- I have already had some of my questions answered.

    Anyhow, I am a 27 male from London UK. I have been a sufferer ( I hate that word!) of keratoconus since the age of 15(since it was diagnosed 12 years ago).

    Now, I only regularly wear one rgp in my left eye and my overall vision is very good!

    Last week I developed what is believed to be a hydrop in my right eye( this eye isn’t great for vision but is helpful for peripheral vision). The hydrop is partially across the pupil and luckily (for now at least) isn’t really affecting my vision. The best way to describe it would be likening it to an almost clear windscreen- feels like a small White show very similar to having some residue on your lense.

    Anyway, I was alarmed by the vision issue and saw my opthamologist that day. She said it was a hydrop and was surprised as how I lacked any pain or apparent infection. A good thing I guess. She also said it was lucky that it wasn’t my left eye!
    What did alarm me was her idea to go and see a corneal surgeon – a mr daya, anyone know him?
    I am apprehensive about the prospect and have a view that I would rather have poorer vision than no vision from an issue with a corneal graft. Paranoia maybe, but it’s understandable, right?

    So, I have a few questions:
    1) once you had the hydrop, did it get worse or better?
    2) did it pain to start with or did it get worse?
    3) what treatments were recommend ( other than surgery)?
    4) i see a mention of improved flatness and vision as a result- i am so pleased to hear this for you! Is that a lucky or probable side effect?

    My main issue is my profession as I work in the city in a largely male dominated office and ailments are not something that are easy for people to be understanding about and i would prefer to keep it to myself as people are always saying ‘why not get laser surgery etc’ when this isn’t an option.

    Anyway, I hope you can give me an insight to my questions and I hope everyone is managing with their condition the best they can.

    Rgds

    R

  25. Jon Severs says:

    Hi Rahul

    Your situ sounds very similar to mine!

    I have keratoconus in both eyes, am 27, and have had since i was 15 too. My left eye was always worse but right eye soon caught up.

    With the left eye hydrops I had in 2007, I got no pain, and as you say, it was like something covering the contact lens – was odd. They treated it with nothing but time and 2.5 years later – actually it’s around three now – it has resolved to be pretty normal, I got no pain throughout the recovery and as time progressed the eye got flatter than it ever had been and the vision a lot better. I’m lucky in that respect tho.,

    My right eye, like you, has been more of a peripheral vision thing rather than a seeing thing, it was really steep. And in February that got a hydrops too! This time it was rather more painful, it blew up massive and was incredibly sore for two months. this time i got put on FML steroid drops. 9 Months later it has resolved relatively well already, the scarring is central but i seem to be “seeing” passed it and it is getting better all the time, tho i am on FML soon for it.

    I think that answers your first few questions – as to whether the flatness always happens with better vision – it’s luck really but personally i think time can be incredibly helpful and so I have ignored the almost constant calls from the guys at Moorfields for an operation to transplant the corneas because i am getting on better without it. For some people transplants work, but for me, I’ll wait til the last possible moment. For the same reasons as you. You have to be pretty strong at Moorfields and insist on following your own path. Try and get them to let you see Dr Ken Pullum when you are next there – he would definitely be worth you talking to for lens options and very interesting thoughts on hydrops/transplants/keratoconus treatment. Ask Mr Daya to refer you…

    As for work stuff, yeah i must have said a million times what my condition is! No glasses, no laser treatment… blah blah. People tend to be quite interested when you rinse out the old Rugby Ball shaped eye explanation tho, so i don’t mind :)

    All the best anyhow, hope you get on ok. Let me know how it goes, would be interested to see how someone else’s hydrops progresses. I really do recommend sitting it out and leaving the eye to sort itself out as best it can. I will stick up a picture of my right eye again to this page so you can see what it looks like after 9 months.

    Jon

  26. B.G says:

    @ RR,

    I too am 27 years old and I also was diagnosed with Kerataconous when I was 15/16 but my condition is switched. I just developed hydrops in my right eye, Its been about 2 months. I remember my optometrist telling me to see a Corneal Surgeon and I freaked out too, but after seeing him I was more at ease. Some Corneal Surgeons really think things through and he told me that we should wait to see how the Hydrops resolves before thinking about a Corneal Transplant.

    Since I was told I had hydrops I have not worn my lens in my Right eye. I have adapted to using just one eye and in these 2 months I don’t even notice the scarring anymore, so the condition could have improved, ill find out when I next see the doctor in December. The pain goes away after a few weeks as the corneal swelling disappears.

    When it comes to treatment, the Doc will give you some steroid drops to numb the eye so that you don’t feel any pain, apart from that there really isn’t anything that can be done. Like what Jon said, some people get a transplant done, while others will try to get through without it. We are all still young it terms of our careers and going through a transplant may cause you to take a long break and if you’re on a roll in your field like I am, I can’t afford to take a break. Its a difficult decision to make because my Kerataconous is at an advanced stage, so I get pressured a lot by Doctors.

    I have finally tried wearing my Boston Scleral lenses in my right eye and have not felt any pain whatsoever. I have now wearing it for a couple of hours everyday and my vision is much better, plus the scarring doesn’t affect my vision, so maybe getting a Scleral lens is something you should look into if you don’t already have it.

    I think everyone has been questioned about why we don’t get laser, its common for them do so, because they don’t know any better. Just ignore them and go on with your life. But sometimes I like talking about it, makes me feel a little smarter than them.

    Anyways wish you all the best with your eye, just make sure you don’t scratch your eye or wear the RGP lens until the swelling goes away.

  27. RR says:

    Thanks for the information. I went to see a cornea soecialist who confirmed the hydrops and was very sensible about corneal transplants saying that I am not near that, yet! So that made feel better coming from an expert. He explained the reasons for hydrops and explained potential for a flatter cornea but let’s not get ahead of ourselves.
    He prescribed sodium chloride solution, 5% to be used for a wee and also some steroid drops to be used in decreasing doses over a 4 week period.
    So, 2 weeks in, how do I feel?
    Mornings are awful! The pain and watery eye is just unbearable but alas, one has to get to work! So it takes about an hour to feel better and I muddle through getting ready and struggle to work the coffee machine. I did find the sod chloride solution worked well but I can’t use this any longer!
    Any ideas how to ease the pain in the morning! There are days i need to get up early and be at work!
    I am going to see him in 2 weeks for a checkup so let’s see how that goes!

    Any advice is welcome but I am wearing one lens only and it is fine! Obviously the initial morning pain of hydrops is my issue!

  28. Chix says:

    Hey to everyone i am from South Africa and have been suffering with keratoconus for the last 9 years. I was also a week ago diagnosed with hyedrops in my right eye.
    I have been for the last 7 years or so wearing hard (rgp) contact lenses in both eyes. My left eye had stabilized with the lenses and i get good enough vision with it while the right had just continued degrading and getting steeper until now.

    I am unable at the moment to see anything with my right eye and cannot even put my lens back in because with the swelling to the cornea it just falls out immediately. While my right eye never really gave me great vision anyways i still do miss it.

    Both my optometrist and and the corneal surgeon immediately said cornea transplant however they said they its going to take at least a month for the eye to heal adequately for the operation.

    I really don’t mind the transplant even tho it is scary,costly and might mean me being completely without the eye for a couple of months if its going to repair the eye once and for all and get me seeing normally again without the need for contact lenses or the like.

    However after reading everyones posts here i am starting to wonder whether my docs are jumping the gun and rushing me into a transplant. I mean if my eye is going to heal itself in a few months and the bonus possibility of getting improved vision anyways should i really rush into a transplant? Has anyone here gone through with the transplant and what are your experiences? According to the docs the success rate is very high about 98% of which 40% get perfect vision while the remainder just have to wear glasses.

    The other question i have and maybe you guys can help with your own experiences.How long does it usually take for this cloudiness to disappear from the eye and how long before i will be able to put my lens in again? I am currently using saline gel and antibiotic prescribed by my optometrist.

    Also what are the possibilities of a hyedrops developing in the other eye while the right eye is still recovering?
    This could be catastrophic for the obvious reason that it would render me completely blind.

    Also is it possible for my left eye to get worse with all the strain its going to be taking ?

    Thank you all in advance for your replies. Hope to hear from you guys soon.

  29. Jon Severs says:

    Hi

    It took around a year and a half for the cloudiness in my left eye to disappear, and my right eye (in which I had a hydrops as well) is just clearing nicely after 10 months. As for likelihood of you getting it in two eyes, it is pretty rare but not uncommon, I’m living proof of that!

    I’d say a month is far too soon. give yourself at least 6 months to see how the eye progresses, there’s no point rushing into things. My left eye recovered to a point better than before and my right eye has done the same thing. I may just be very, very lucky, and transplant may be the best option for you, but I would definitely wait to see what the eye does. In the UK, they wouldn’t go anywhere near a transplant for about that long anyway as oeprating tooe arly can cause a lot of problems.

    I wish you all the best :)

  30. Bob says:

    I came across your page almost by accident from Google. Been reading with lots of interest as I too have have a similar problem.
    Had keratoconus and my RGP lenses for maybe 25 years (I am in my late 40s). All was okay-ish up until a couple of years ago.
    Aboout 13 months ago or I suffered a hydrops to my left eye. I’ve never suffered severe pain with it but I do still have ongoing, nagging aching pain. A bit like a hangover if you drink too much red wine – but in your eyeball of course rather than in your brain. Soluble aspirin takes the pain away for a few hours, but I’ve been taking aspirin in reasonably large doses for over a year now and I want to discontinue. Been to see doctors and surgeons and they don’t seem particularly interested in the pain. I did get prescriped HYLO-CARE – see http://www.dry-eyes.co.uk/acatalog/Hylo-forte.html
    and that has certainly helped. I think part of my problem is dry eyes – and I understand from the keratoconus support group that this is common when you have been wearing lenses for a long time like myself. But the pain is more an “eyeball” pain than a “discomfort” pain – and not any different with or without lens wear.
    4 months after the hydrops I was fitted with scleral lenses but very mixed results. Vision was fantastic with them – I could even see the leaves on the trees at 100 yards distance but I really struggled getting the lenses into my eyes without air bubbles – and I never really overcame the “ych” factor of putting something so big in your eye. Also the comfort was a big problem and I was only really able to wear them for a couple of hours or so at a time (and I did persevere). I’ve now gone back to RGPs which I can wear in both eyes (and occasional “piggy-backing” with daily disposables (for comfort)). I’ve been very lucky that the hydrops has left only a small scar across the centre of my cornea, however I do have good vision with RGP lenses (but uncorrected vision is very poor now). My only real problem is this nagging pain which doesn’t seem to be getting any better over time. I understand patience is a virtue here but after more than a year of discomfort and headaches I am getting really fed up with it. I have discussed the options for a corneal graft at the hospital but the consensus seems to be if you can possibly live with lenses (and I can at the moment) then that is the better option. I understand of course that everyone is different but for me I’m putting off surgery if I possibly can.
    Also, I’d suggest to anyone reading this that my experience of my local hospital was that they only had 15 minute appointments and were really not able to look after my advanced keratoconus as it progressed. These short appointments were okay when all was fine but once I started having problems it was hopeless. Go find a specialist. I have now found a really wonderful guy at Southampton General who fits all sorts of weird and wonderful eyes like mine and I’d recommend to anyone reading this – his name is Rory McClenaghan.
    So for now I’m just putting up with the nagging pain. There seems to be no real pattern to it although I will say that cold weather and certainly cycling in cold weather is guaranteed to bring on the pain (so use the car!).
    If anyone has experienced this and can tell me how long this might go on for / tips for pain relief I’d be very interested.

    Bob

  31. Jon Severs says:

    Hi Bob,

    Thanks for the comment, hopefully this will strike a chord with someone and they can relate and help you out!

    My personal experience is constant pain originally in my right eye’s hydrops, this was solved completely by steroid drops (FML) which I have been off and on on for the past year. In my left eye I got no pain at the beginning. Subsequently, after a few months, I get maybe twp-day bouts of the dull ache you describe which tends to be followed by an improvement in vision. 2.5 years later i still occasionally get this in my left eye and it still seems to improve after (in clarity more than vision if you get what i mean). The right eye does the same, though this eye takes a lot longer to focus for some reaosn.

    An added thing I have recently experienced is an icnrease in black floaters in my left eye. Apparently this can be as a result of damage to the eye so my hydrops is probably the cause. It is not affecting my vision at all but is a little distracting and is definitely a new development!

    A final thought as well, I saw a report once about the sleeping patterns of keratoconus sufferes, in that they tend to sleep with their head in the pillow, face down, and the thinking was that they rubbed their eyes this way while asleep. I certainly find it most comfortable to sleep this way, with pressure around the eyes (no idea why!) so would be interesting to see if anyone else does the same!

    Best of luck to you Bob and hopefully someone can help with your problem

    Jon

  32. Chix says:

    Hi everyone

    Just a recap on my situation described above. It has been almost four months now since the hydrops occured in my right eye. My vision in that eye has actually cleared up quite a bit and can now actually make out objects with that eye. Looks like it about 90 % to what it was and the whiteness in the cornea has decreased quite a bit as well. Went to see my opthamologist this week and he was extremly pleased. He said the swelling on the eye has completly dissapeared and the whiteness is almost gone and i can now stop using the drops. However he still feels that i should not wait and go back to my hard lenses but should rather do the cornea transplant in the eye. According to him my eye is now ready for the operation and we can do it as soon as possible. He doesnt believe my vision would be great with the lenses due to the fact that the large scar has developed in the centre of my cornea. I would just like to get opinions from both those that have done the operation and those that havent to get my pros and cons for going through with it.

    Thanks

  33. Diana says:

    Hello Again,

    We haven’t gotten very far, my daughter and I. Keith, are you the patient in South Florida that’s has disability and went to Bascom Palmer? If so, please email me.

    Thanks,
    Diana

  34. Jon Severs says:

    Hi

    Glad to hear things are approving! The advice I had was that nothing should be considered operation wise for at least 9-12 months to give the eye chance to fully be restored to “normal” size. Personally, I would push for the lenses to give them a chance, not just hard lenses but scleral and soft as well, mix it up and see what works. They said I would never see through the scar on my left eye but I am driving with it nowadays, they don’t know how and neither do I but with scleral lenses my brain ignores the scar and i can see perfectly well!

  35. DB says:

    Hi,
    Thank you for this very useful website. I experienced my first hydrops in my left eye 7 weeks ago, I am a KC sufferer for 12 years now and have worn by RGP lenses everyday for vision correction. Since the hydrops occurred (overnight) I have been unable to wear the lense in my left eye for the past 7 weeks. I haven’t been driving due to low to no vision in my left eye. I have also been told 2 to 3 months, howver it is now 7 weeks and I feel as though the swelling has gone down but the scar might be right across the front of my pupil which is a little disturbing for future sight. I have the transplant in sight also, tho I think my Opthamologist is balancing the timing and my ability to recover from this. My op has advised that I am unable to be fitted for lenses in that eye atm, have others had a similar experience, and thoughts on driving?

    Cheers

  36. Chix says:

    Hi DB

    It has been around 5 months since i had my hydrops.I also wore rgp lenses and occured very suddenly ie overnight like yours. My opthamologist advised me over a month ago that iwas ready for the transplant however i have decided to wait a while longer to go in for the operation just to see how much it has healed and also because I have heard that the longer you wait for the eye to heal the better chance you have for the new cornea to take. I will be going in any day now for the op just waiting for an available cornea. About the driving I have been driving for the last 4 months or so even with basically one eye. This even tho I was advised by my opthamologist to keep driving to a minimum. I just got fed up on being dependent on others especially for things like getting to work. Started of slowly just went to nearby places work and back home etc but recently have been taking longer journeys. It was really weird at first driving with one eye not just because your vision has been reduced but also your depth perception is really screwed up which really sucks for parking. However i have gotten used to it after a while and now i drive everywhere i used to before just alot more carefully and keep night driving to an absolute minimum.

  37. DB says:

    Thanks Chix,

    Your experience provides useful insight into my current situation. Particularly your experience driving, the lack of depth perception is my biggest concern, i have driven a couple of times locally but am dependant on friends and family for everything else. Good luck with the op, please come back and share your post op experience.

    DB

  38. bt says:

    Thanks for creatng such an intelligently done site. I have had keratoconus for about 20 years and its quite advanced in my right eye. So far I have been luck as my corneal scaring did not cover the enter of my corneas so my 20/400 vision was correctible to 20/40. Unfortunately I developed a small hydrops this weeek and now have multiple visits set up asap. Anyway I appreciated your site.

    BT
    San Diego, CA

  39. C B says:

    I had hydrops about 25 years ago. At that time they gave me Diamox pills to dry up the corneal edema. It took about 2 weeks for the eye to recover and for me to go back waering the RGP lenses. Very little scarring occured and not in the line of sight.

    CB
    Chicago, IL

  40. AG says:

    There are so many stories and experiences here that I can directly relate to. I’ve KC from last 5+ years and have been pretty happy using Scleral lenses till last Dec (2010). Out of the blue one fine morning I discovered my right eye developed hydrops. It didn’t pain and the recovery almost took 6 months. I did underwent the only procedure known for hydrops C3F8, strongly recommend others to find out about it. As my right eye was improving and I was beginning to see well again my left eye developed hydrops too in June. Now it is about 1 month + and the water accumulation looks to go down. I did go the C3F8 procedure in my left eye and as the recovery has not been too great my doc is recommending to go thru another C3F8 procedure. I’m scheduled for this Thursday (21st Jul 2011) lets see how it goes. I was very lucky in terms that the scarring didn’t affect my vision and my right eye cornea actually became pretty flattened. I’m still work in progress as far as getting correct lenses is concerned but I’m sure with time I’ll get my correct fit (Sclearal).
    The last 6 months have been very frustrating and difficult for me to manage. Only couple of times I got pretty bad light sensitivity in my eyes and had to take couple of days off from work, other then that I’ve been pretty good and have been able to work in front of the computer for most of the times without any issues.
    I really don’t know what triggered the hydrops esp in my left eye which was the eye I was functioning with, thank God the hydrops didn’t develop 2-3 months earlier otherwise I would have been totally useless.
    For all those who don’t know about C3F8 it is basically a procedure in which compressed nitrogen of some form is inserted in the eye and it pushes the water accumulated out of the eye. The gas expands with time so it leaves less and less space for the water to be inside the eye. It does help in the healing process too I’m not sure how though.
    More difficult then hydrops is the constant queries I get about my eye condition from co-workers and their infinite suggestions. I’ve not got used to all that and hoping that the situation will improve soon. Does anyone know if hydrops can reoccur? From whatever research I’ve done it looks very unlikely and if your cornea gets flattened with minimum scarring it is actually a blessing in disguise.
    My right eye vision (unaided) is pretty good now I can read, watch TV and do basic things without putting my lenses on which is a great thing.
    All the best to all of you guys and keep your fingers crossed this too shall pass.

    – Amit Gupta
    Bangalore
    18th July 2011

  41. Jon Severs says:

    Thanks for this comment Amit. You’re experience is very similar to mine though I didn’t have this procedure you talk of. Best of luck with your recovery

  42. marcel85 says:

    Hey,

    Everyone my name is Marcel I was diagnosis with corneal hydrops almost two weeks ago I’ve had keratoconus for 6 years. I when to a corneal specialist and was advised it could clear up in a couple of weeks or a couple of months not years this sucks and the sqecialist only has me doing Muro128 twice a day and I get headaches every other day I’m suppose to see the specialist next week for a follow up. but I’m thinking im going to try to go see him this week.

  43. Nigel Waghorne says:

    I have just found this website. I have bilateral keratoconus. I had a left corneal transplant in 2000 which has had no problems. I wear rigid scleral lenses on both eyes. I suffered an acute hydrops a week ago in the non-graft eye which is very painful.I am using 5% aline drops & antibiotic ointment which is very soothing. I am reassured that patience is the key & I don’t have to make rash decisions about another graft yet. My Ophthalmologist has referred me to a corneal specialist for a second opinion. I am a physician in an emergency unit but my suturing & other procedural techniques haven’t suffered because I think my brain is used to working with monocular vision. I can even use a slit lamp to remove corneal foreign bodies from patients’ eyes !!

  44. Jon Severs says:

    Hi Thanks for the comment. I am very heartened by the fact your transplant was so successful, I do not hear many good stories! Also, that you are able to persist in your work. I am a journalist and am also managing to persist, despite two hydrops (one in each eye). The Hydrops does indeed require patience I am afraid, but both mine have cleared well and seem to be getting continually better. I wish you the best of luck!

  45. Is anyone from the US that has had puberty onset keratoconus. My daughter has doubt about keratin binding if she did get a cornea transplant. Thanks

  46. Mathapelo says:

    Hi, My name is Mathapelo and I have Keratoconus and currently suffering from hydrops from my right eye. This condition is really frustrating me and I was advised to do a corneal transplant. I have advanced keratoconus so I am the unlucky one. But knowing that there are others who have walked in my shoes is quite comforting.

  47. Bhuvan Gandhi says:

    Hi Mathapelo,

    I have advanced Kerataconous in my right eye as well and a couple months ago i had Hydrops in that eye. A lot of doctors will suggest you get a transplant right away, however I after a month of keep a lens out of my right eye, how was able to put one back in. Yes its a month, but depending on the placement of your hydrops, it should actually improve the vision in your right eye as it heals. Matter of fact, my vision in my right eye slightly improved. My suggestion is to ask your doctor about whether you can correct your vision with Scleral lenses, they work for me. My doctor is Dr. Perry Rosenthal of the Boston Foundation for Sight, he is very well known in the field and according to him: as long as the scleral lenses allows me to see, i don’t need a Corneal Transplant. But for the meantime you need to bear with the discomfort, the more you leave it a lone the faster it will heal.

    Hope this helps

    Bhuvan

  48. Chix says:

    Hi everyone

    Sorry that I have not commented in a while. Just wanted to update on my progress. In January this year I had developed a hydrops in my right eye and was told that i needed a cornea transplant by my doctor.I waited till the eye cleared up to check if there would be any improvement in vision etc but unfortunately due to the scar being right in the centre this was not going to be possible. So in July this year I decided to go in for the transplant. I was really afraid of this operation for the obvious reasons but was largely surprised to discover that it was not as bad as I originally thought.

    The operation took about 2 hours so i spent around 4 hours altogether at the hospital and was sent home right after. The operation was fairly painless since I was had a local anesthetic to the eye and was on a drip so was out for most of the operation.I had a blocker applied to the operated eye so could not see a thing out of it which helped alot. The eye was patched up after and I returned home. When i returned home could not feel a thing since my eye was was still under anesthetic.It was only the next morning when i opened my eye there was some discomfort and felt very strange. Sort of like I had a loose contact lense in my eye. The eye was very irritable at this stage. I went later that morning for my first check up and the doctor said everything looked good. I have had regular checkups (twice monthly) since to check the progress and things have been going well. I was required to keep on wearing a patch for the first three weeks but after could keep the eye open. I needed to use cortisone drops and well as tear gel and use them till today. The cortisone to prevent the eye from rejecting the cornea and the tear gel to keep the eye hydrated as the dry eye becomes scratchy and irritable. Now five months after the operation the eye has healed pretty nicely and i am getting some very good vision. However i do have to wear spectacles which sure beats hard lenses but is still a bit of a nuisance.I have removed the first set of stitches about a month ago however the will only be able to remove the main ones in about 6 months. At that point the eye accrording to the doctor should be fully healed and i should get perfect vision by then so I am holding thumbs.

    So this is the update on my progress. I had to go the transplant option but in the end i must say that i am really happy i went that way and cant wait to do my other eye. I get better vision now then i was getting before the hydrops even without my glasses and I no longer have to wear an uncomfortable lense in the eye. I think I have made the correct decision and hope this helps others in making their decisions. The transplant might not be the best option for you but at least now you have an idea whats it all about

  49. Jon Severs says:

    That’s really useful thanks and it’s great to get an insight like that! Glad it has all gone well for you as well!

    Sent from my iPhone

  50. rajkumar says:

    The God that created earth and loves each person like a child, was my inner strength.

    http://www.persecuted.org/passage/?search=Revelation%203:18&version=NIV

    thank Living omnipresent GOd protect you.

  51. Miskin says:

    Hi,

    I have a digonised with KC since 1 .5 years. and I was wearing rose hard lens but suddenly one fine evening I noticed a while bublle in my right eye covering my corenea , I could harly view any object.. I consulted of the doctor and he suggested for gas injection and AC wash , I would like to know if any body happen come across this situation ..I would like to know whether hydrops comes again in future after the injection.. Could any one let me know about scar that comes after the injection and is there any chance not to have a scar…

    Best of luck to every one..

    Thanks and regards.
    MM

  52. Jon Severs says:

    Hello MM

    For my two hydrops (one in each eye) the scar was left in different places, both relatively central. I can still see through it though and it improves over time. It took two years to improve in my left eye and after 18months my right eye is improving and good in low light. Never heard of the injection!

    Sent from my iPhone

  53. MM says:

    Hey Jon,

    Thanks for the response , I would like to know what was treatment u underwent after you noticed acute hydops ,.I am undergoing gas injection and AC washnext weak and I will let u know about it ..

    Have a bless day.
    MM

  54. Jon Severs says:

    Hi MM

    I had steroid drops for a months but that is it! The rest was just giving it time

    Best of luck

  55. MM says:

    Hi Jon,

    Could you let me know which place u are from ? if possbile I can suggest you the procedure and hospitals where gas injection are perfromed.

    Thanks again.
    MM

  56. Jon Severs says:

    Thanks MM

  57. MM says:

    anytime.

  58. Steve says:

    Jon, thanks for your great blog. It shows how someone with a unique challenge can use that for the benefit of others. Hydrops in both eyes! Geez. I called my doctor in a panic this morning and after reading your blog and others’ responses I’m feeling better now. I’m prepared to tell me opthamologist what his diagnosis will be.

    I’ve read everything, but don’t have the answer to this Q: If the ailment starts as as small as a pinhead, will it progress to t he size of a BB or even bigger after the first day? If so, how fast? In other words, when can I feel comfortable that it stopped growing in size?

    I’m curious about the c3f8 treatment. Perhaps too new for me to feel comfortable with though.

    Steve
    Salt Lake City, UT

  59. Keith says:

    Hello everyone. I have been following this thread ever since my first bout with Hydrops in my left eye. See the top photo that is me. Well 3 weeks ago it happened again this time in my right eye. Upon awakening I noticed cloudiness and first thought it was my RGP lens being dirty, I never sleep with them in. I wish that was my problem. I immediately went to my neighbor a optomotrist and she confirmed my nightmare. While I was there she contacted my opthalmologist and I was immediately put on prednisolone drops and muro 128 and ointment at bedtime. I was unable this time to wear my lens. The right eye is my weaker one. So I am able to see well with my left 20/20 with my lens. My next appointment is in 1 week.

    I guess I am the unfortunate person to have gotten hydrops in BOTH eyes. My vision is cloudy and the opacity seems to have spread since onset.

    Today is the first time I can actually see words on my cell phone and also see the road while driving. I am hoping the cloudiness clears up and the scar I keep hearing about is away from the pupil area.

    So in getting back to your question I have noticed spreading of the cloudiness as told to me by my wife. I am crossing my fingers that this all clears up soon.

    One positive note if you can call it one is I definitely notice that I can READ words without my lens. If this holds up and clears out I will be able to see better. And my script would be a weaker one.

    I was also told that I could need a graft I am starting to think that may be the case in this eye but Im keeping my hopes up that it doesnt come to it.

    I also may consider the crosslinking if it clears up. I hear good things about it so im crossing my fingers and toes. I will keep you posted

    Good luck everyonr.

    Keith

  60. jarratt says:

    Thank u man,does hydrops ever return?

  61. Hady says:

    Dear Sir

    I have been told by my doctor that I have a keratoconus condition in my eyes, me and my twin brother. We are confused how to take action.

    We are still in the beginning I believe as the only thing happening now is the decrease in vision ability. We don’t have eye drops yet or other pain condition.

    I am slightly sensitive to light and I always have to focus a lot of time on things to be able to see them properly.

    Would you kindly advise me what is the best thing to do before things get worst? Is operation the only treatment or cure ahead of me?

    Thanks for this great blog. It helps so much

  62. Keith says:

    Hady first I would see an opthamologist. There are studies that show collagen crosslinking strengthens the cornea. This may be an option for you to slow the progress of KC. My case is advanced and my Dr suggests the crosslinking so when this hydrops episode calms down I will surely consider it.

    Good Luck and dont get frustrated. I can see 20/20 with my RGP les in my left eye

    Keith

  63. Santiago says:

    Hi
    Im Santiago and i was diagnosed from keratoconus at 18. I had a severe cone in my right eye and i were using like 3 years hard contact lenses, One week ago my doctor said i have my right cornea very thin in some parts, like 150 microns and that i have a hydrop. I were very very scared, he said im not a candidate for cross linking, and told me to stop using lenses on that eye. Im using hipertonic drops (Sochlor 5%) 4 drops a day 6am, 12pm, 6pm, 10pm. Im afraid of the thinnest of my right cornea and for the hydrops.
    Hope we all get better.
    Im still afraid

  64. Ruben Brunt says:

    Hi everybody, my name is Ruben, I am 14 years old and I was diagnosed with Leber’s Congenital Amourosis when I was 3 months old. I am registered blind. I was diagnosed with advanced kerataconus with acute hydrops in my right eye in November 2011. It has been very painful which was originally treated with cycopentalate and atropine drops which didn’t help because they caused bouts of pain, higher pressure and photophobia. In April 2011 I went to the Queen Victoria Hospital in East Grinstead, Sussex, UK which has a specialist corneal plastic unit and they prescribed sodium chloride ointment and celluvisc eye drops taken 3 times a day, ointment first then celluvisc. This treatment helped until I had cross-linking done which was very painful, it has been a success. For a month after the op I saw a cloudy grey patch which was the scar which has reduced in size and I cannot see the cloudy bit anymore.

    Unfortunately exactly 1 year later I got acute hydrops in my left eye and I am using sodium chloride ointment and Optiv eye drops in both eyes as much as possible, as and when I feel like it. According to my surgeon, Mr. Lake at QVH in East Grinstead they will perform a slightly modified cross-linking procedure on my left eye later this year which does not involve scratching the surface of the cornea therefore will not be as painful.

  65. Ruben Brunt says:

    I have just read back what I have written and I noticed a mistake. It was November 2010 that I was diagnosed with Kerataconus and acute hydrops in my right eye, not 2011. I have been suffering with Kerataconus for over a year now and it is a painful and uncomfortable condition. Ruben

  66. I would seriously recommend you all to try Tachyonised water in your eyes as drops. I do that, and have been doing so for almost 9 years now (since my diagnosis of Keratoconus). I’m not a doc, but I keep looking for alternative treatments. Don’t ask me for what tachyonised water is scientifically etc, I use it and feel it has helped me slow down progression so far – touch wood! Meet a good homoeopath and start treatment for your eyes- it can’t do you any harm!

  67. Thandekile Tolman says:

    I’m 23 years and i was diagnosed with Keratoconus when i was 18. I am one of the few people with corneal hydrops on both eyes.
    10 months ago i woke up to find my left eye cloudy, and i had an exam to write.
    After my exam i googled searching for a diagnosis after realising it was hydrops i made an appointment with my opthamologist.
    B months later all that was left was a scar and i can see through my left eye better than i used to (under certain light). Last week my right eye had the hydrops, the specialists tell me i need corneal grafts in both eyes.

  68. Keith says:

    Well I too had corneal hydrops in both eyes and since my vision has gotton better in my left 20/20 corrected with RGPs nothing needs to be done. My right eye recently had a bought with hydrops far worse than my left. This started Dec 6 last year and is all but gone effective last weeks visit with my Dr. He said I escaped it again. Im still thinking about X linking on my right because its a weaker eye. I am ready to schedule with my optomotrist to see what my new RX is in my right,
    Good Luck I will keep you posted.

    Keith

  69. jorge says:

    i was just diagnosed keratoconus but they say my left eye is very bad, my doctors say that a hydrops is very rare, is that true? or a hydrops is something all keratoconus patients will suffer? also did the rgps help slow the condition?

  70. bryan says:

    Three weeks ago I had a transplant in my left eye (PK). It has been awesome. The first week was rough and the second got better, but by the third my eye is feeling mostly normal and looks normal too. Im at about 20/50- 20/40 which they say is rare and very good at this stage. I cant wait to get the second one done, which should be in about 5 months or so. Judging by my vision in the left eye now- there is a good chance I will not need correction when its time to get the second eye done. I figure if Im around 20/30 in 5 months, (stitch removal improves acuity to a degree) then I will be ready to go.

    I’m 40 and was diagnosed 14 years ago, and have endured RGP’s, collagen cross linking, and most recently sclerals. I thought the sclerals were gonna do the trick, great vision and comfort at first, but eventually with my degree of steepness, the corneas were rubbing and causing extreme discomfort. I still had good vision, which causes some Dr.s to advise against transplants. However, experienced Dr.s who understand how uncomfortable life with KC is, and appreciate all the advances in transplantation see it as a no-brainer.

    If you have KC and are uncomfortable, have good insurance, get the transplant- it will change your life- this from a guy who is only 3 weeks out from having one eye done. The unhealthy corneas affect your sleep, cause headaches, the way your eye looks, and of course vision. They have DALK (partial tranplants- no rejection rates), IEK (laser assisted transplants) to name a few advances. I had traditional PK after the Dr. first attempted a DALK but saw that my endothelium had some bad areas so it was converted to a full PK. Thats ok, the trade off is actually better vision in the long run. The down side is the longer recovery, weaker wound stability, and risk of rejection.

    One of the key factors that sold me on the transplant are the laser treatments available after transplantation. I already had pretty good vision, but my main goal was to achieve comfort and quality of life. So I was really not happy with the thought of having to wear lenses after a transplant, since they have been my nemesis for so long. The good news is that since your new cornea is “normal”, the comfort level (and vision) with contacts are vastly improved. The even better news is that PRK and other new laser ablation techniques (not LASIK) offer the opportunity after a transplant to have absolutely no need for correction (not covered by insurance- but worth it)

    So its my advice, try every possible avenue you can, but if you are uncomfortable and have insurance, get the transplant. Find a great Dr. on the Internet first, dont just go to anyone. Another reason I decided to do this now, is that I envisioned myself at 70 or 80 years old, having to fumble with contacts- not good.

  71. sulaiman says:

    Well, i’m experiencing acute hydrops in my left eye for almost six months now. The first opthal i consulted gave me sodium chloride eye drops prescription for two weeks. After i done with the two weeks priscription without any drammatic improvement, then i went back to the doctor for further medical treatment suggestions. On my next visit the opthal direct me to a corneal specialist in another different clinic..

  72. hi im also having a keretoconus in both two eye, i even quit my studies at university bcz i was not cooping with the situation, so im luking for help, my left eye is worse, i went to so many eye specialist but i nevr got help you can call me at 0762126472

  73. UA says:

    i am 37 years and have keratoconus in both my eyes from about 6 years now. Last month on, I started wearing scleral lenses. What I want to know is, does hydrops occur for all having keratoconus or is it rare?. Will i also eventually have to suffer hydrops?

  74. Remarkable issues here. I’m very glad to look your post. Thanks a lot and I’m looking ahead to contact you. Will you please drop me a mail?

  75. Sunny says:

    Hi to all.

    I have had keratoconus for about 8years now ever since it was diagnosed when i was 31, so i’m probably a late starter, however, it accelerated rapidly over the last 4years, and I have been comfortably using sclerals for both eyes since the last 3years with 20/20 in both eyes.

    Two weeks ago, the hydrops materialised painlessly in my left eye rendering me totally blind in that eye and after reading all the posts above, I have decided to wait patiently to see how it develops over the next few months before deciding the next course of action. The right eye is 20/20 with a scleral so luckily I can still drive and maintain a certain level of work stability.

    My question was to Bryan who had the transplant done. I would like to know where you had your transplant done and perhaps which doctor so that I can consider my options and possibly get an opinion on my case? I would be very grateful for this information.

    Sunny

  76. Jon Severs says:

    Best of luck with it Sunny – two years down the line my right eye still clears more every two months or so.

  77. Sunny says:

    Hey Jon,

    Yeah, I’ve been following your posts and can see you’ve really stuck it out, which is what I intend to do also for as long as possible before resorting to the knife. Two years for each eye to get back to normal vision seems a long stretch, but is worth it in my opinion, so long as the quality of sight comes back to what it was with sclerals. Hopefully, I won’t get the hydrops in the right eye until the left one clears! As with your case, there is no pain with my hydrops so I’m only using the standard prescribed drops of 5% sodium chloride, even though I get the feeling, like others who mentioned above about placebos, that the drops will not really make much difference and time will be the best healer.

    The sclerals ( from Moorfields ) really made a big difference to vision and quality of life, and allowed me to continue my squash playing and other fitness acitivities which was not possible with the RGP’s before that. Now with one eye, sports is out, lol, but I’ll be patient for now. Then again, if, as some people have said, the residual hydrops scar ends up being in the centre of the left eye, then I will have no choice but to consider surgery options. hence I would like to keep tabs on those options.

    Will keep updating here on the progress.

  78. DM says:

    I am suffering from last 4 yrs karatokonus by left eye please suggest me the best medicine for this

    DM

  79. Tom says:

    Hi Jon,

    I’m a 21 year old student in the UK and have one year left of University. I’ve suffer from KC since I was 11 years old and my right eye is in pretty bad shape, yesterday I woke up to find I had developed Hydrops in my right eye, I just had a few questions I was hoping you could help me with:

    I started wearing a patch (like a pirate) over my right eye to stop the light getting to my eye but will wearing this patch stop my brain from getting use to seeing out of one eye? I don’t fancy walking around University with a patch on.

    How long will it take roughly for me to get use to seeing out of one eye? everything I look at right now just has a milky patch around it

    I really underestimated how serious this condition was and I’m starting to panic about what might happen to me so some advice would really be appreciated

    Thanks

  80. Jon Severs says:

    Hello Tom

    Every case is different so is tough for me to give you any specific advice but I can give the benefit of experience.

    First hydrops I had I had no pain and it was like having scum across the eye – milky as you say. The second I had a hell of a lot of pain and no vision at all. In both cases the brain stopped using the eye altogether. I felt dizzy for maybe two days then it got used to it. Occasionally in certain lights I would have to close the affected eye as the brain would remember it was there but for the most part it coped ok. That said for the first week or so I cut some card and stuck it to the lens of some wrap around sunglasses – blocking the eye but not obviously as a patch!

    The eyes recovered at different rates but both in ‘leaps’. By that I mean they’d suddenly be able to see more than they could before and that would make me dizzy again for a day or two but not that seriously, then things returned to normal.

    I would say the condition is only as serious and restrictive as you let it be and any decision has to bd yours and yours alone. Find out as much as you can about everything then choose what is best for you. I have had ten years of people telling me to have an op but have resisted as it is not right for me so I stood my ground!

    Best of luck

  81. Greg says:

    Hi All,
    I guess misery loves company so I am going to jump in. I am 52 and have had KC for at least 15 years. I had my 2nd hydrops Thursday. Both in my right eye. The first was about 6 weeks ago with very little pain and almost no clouding. This last one was much different. I noticed a little clouding in my right eye and a little pain this time at first. But this time, the pain was much worse after I took out my contacts. (I wear an RPG piggyback over a soft) I went to see my dr (he was out in surgery so I had to see his partner, he is not a corneal expert). He put a patch on and told me not to wear my contacts. The pain gradually increased during the day. Just after I went to bed, the pain was extreme. I could barely open my eye. I put my soft contact back in and the pain diminished substantially. The next morning, I went back to the same dr. He chastised me for wearing my contact, and gave me another patch. I asked about the extreme pain and he pretty much said to suck it up and use tylenol and aleve. I went home, and my wife, who is a family practice dr, brought me a shot of nubain with phenergan. It put me to sleep, but it really didn’t help the pain that much. My question is, why would he not allow me to wear my soft contact? It relieves the pain and I assume would be less agravating to my cornea. This morning, the pain is about 2/10. I am taking OTC pain meds and Muro 128 5x/ day. He said I could start wearing my contacts on Monday. I cringe at the thought of this pain going on for weeks. I have no or very little clouding. It’s the pain that bothers me the most. It hurts the most when I blink. Thanks in advance to any advice.
    Greg

  82. Jon Severs says:

    They did not let me wear a regular lens either – I think this is because the eye inflames much larger so the lens won’t fit anyway and also because it aggravates a very tender area – like putting a sock that rubs onto an open wound.

    The pain for me was just as you say – really intense. I was on steroid drops and also was given a very large scleral lens that kept my eye lids from aggravating the hydrops. I was on steroid drops for two months and used the oversize scleral for around a week. This meant I did not feel the pain. When I came off the steroid drops briefly in that two month period the pain was intense.

    I would say your temporary relief from the lens is because it stops your eye lid aggravating but it sounds like the lens aggravated the healing process. Ask your doc for an oversize scleral perhaps? These sit on the sclera and protect the eye.

  83. [...] Eye patch after surgery: … http://www.pediatric-ophthalmology.com/html/procedures.html 15.Hydrops « Keratoconus Info An eye patch, basically, but one that does not draw attention to yourself! … You just have to [...]

  84. Lillian Joyce says:

    I am the mother of a 22 year old special needs daughter who is suffering terribly with an acute case of hydrops. She is taking an antibiotic, steroid, and muro ointment as well as pain medicine but at night her pain seems unbearable. Does the group have suggestions of things that made you feel better? My daughter cannot communicate accurately what she feels. This started on last Tuesday night September 25th. Thank you for any suggestions and assistance. Lillian

  85. Jon Severs says:

    Hi Lillian

    What really helped me was: sunglasses, a large scleral lens to stop my eye lids aggravating it and cold compresses

    I hope she feels better soon

  86. Bob Evans says:

    Lillian – I’ve had the same issue – best remedy I found to be co-codamol; but see http://tinyurl.com/6sgr2a9 you’re not supposed to take it for too long. The pain/vision too does improve given time so don’t despair. As for contact lens / no lens / drops etc I found made no difference to me but I appreciate every case is different. Best wishes to you both. Bob

  87. Lillian Joyce says:

    Thank you Jon and Evans. How long did it take your hydrops to go away? I do not think my special needs daughter would keep contacts of any kind in her eyes? Thanks for your comments and support. Lillian

  88. Bob Evans says:

    Lillian – my hydrops (left eye) happened about 2 years ago. I had maybe a month / 6 weeks of real discomfort (i.e pain) (that’s when I was using the co-codamol) – and since then the pain has subsided but I do still (2 years on) get occasional “twinges”. This is usually a few seconds long and fades away – happens now twice a day, maybe 5 times a day but then I have days when I get no pain. Wearing / not wearing a contact lens makes no difference. I’d best describe the pain as about the intensity of a red-wine hangover, but of course in you eyeball not in your head. It does though pass quickly nowadays

    I did make a conscious decision about a year in to stop using painkillers unless I really had to as I think long-term it’s not a good idea.

    What DOES reliably make it hurt are bright lights (morning sunshine especially difficult) and even indoor lights.

    Of course what happened to me might be completely different to your daughter – this all seems to be very individual.

    Now the good news (not much good news surrounding keratoconus!) – the hydrops has left me terribly short-sighted in that eye – my focal length is only about 2 inches (but this is corrected OK when I wear a contact lens). I use a smartphone to read kindle books and watch BBC- difficult to do for long but I can at least I can now read without contact lenses – I couldn’t do this before my hydrops episode.
    I’m now wearing a pair of lenses again and able to drive / work although I can’t tolerate the lenses all day I have to take breaks.

    Bob

  89. Lillian Joyce says:

    My daughters hydrops seems to be getting worse and not better. It started on September 25. We are doing 4 times a day antibiotic drops, lotemax steriod drops , atropine drops, and muro ointment 6 times a day. Please tell us if this is similar to what everyone else used thanks Lillian

  90. Pamela says:

    I’m 27 years old and have been suffering with this disease for about 11 years now. Yesterday at work, while I was on the computer my left aya, which has always been far worse then my right eye, Got blurry all of a sudden, I thought it was dust or an object tjhat had entered my eye, I washed my face several times and then eventually came to terms that something had definetly changed in my vision, I called my doctor and went in, The doctormlet me know that I have hydrops in my left eye, and I’m so sad, I can’t stop crying I hate the fact that Their is now this cloud blocking half of my eye, I fel like everyone can see it, I avoid all eye contact. It hurts and I’m seriously getting depressed.

  91. Jon Severs says:

    The first few days are bad but the good thing is in my experience it can only get better after it initially occurs. Stick with it at stay positive and remember for many people it can be a good thing with the eye flattening slightly! Best of luck

  92. Jodie says:

    First of all, thanks for the great info! I’m legally blind in my left eye due to KC, and my right eye is at 6/38 corrected. My last checkup they said my left eye has quite a bit of scarring, I’m worried that this could mean Hydrops could occur due to the cornea being so steep plus the scars. My KC seems to progress quickly, and hasn’t shown any signs of stopping. Both eyes are past Kerra Rings, CXL and contacts stage (both cornea’s are too thin and steep apparently) with a transplant left as the only option (which scares the hell outa me!) I can still manage quite well with my right eye vision and glasses (although they don’t help a great deal). Is there anything that can prevent hydrops? Or do I just wait and hope it doesn’t happen?

  93. Jon Severs says:

    It’s random unfortunately but if it does happen you could get lucky like me and it improve things! How many years have you had it?

  94. Jodie says:

    I was diagnosed 7 years ago. My vision in my right eye was almost perfect back then and my left eye was correctable to 6/7 (almost 20/20) with glasses. I was legally blind in my left eye 3.5 years later. So quite fast in progression :(

  95. Jon Severs says:

    Mine was quick but not that quick – sounds like you a tough run. hopefully things will now get better. try and stay positive. My attitude is try not to worry about it getting maybe worse, just try and deal with it if it does get worse. It’s tough but it works for me most of time – still get down days though!

  96. Jodie says:

    It has been tough, I always allow myself one day to be miserable then pick myself up and remember there is always someone worse off.
    This page has been so helpful, it’s nice to talk to others who share the same frustrating condition.

  97. Jon Severs says:

    Haha I do the same. Those miserable days are what make the good days even better.

  98. Tom says:

    Hi Jon,

    Sorry its taken me a while to reply but I’ve been incredibly busy since I asked for your advice back in September. My hydrops in my right eye has drastically changed since then, with the pain stopping about 2 weeks after being diagnosed. I had some trouble with the eye drops I was given as I was allergic to them (bad luck right) but after a few attempts I was given a drop that suited me, which made things a lot easier, even if it was a placebo. i took these for a few months as my eye began to heal. I went back to university in that time and haven’t felt the hydrops have held me back once, I’ve even continued to play sport for the university, which was a big worry for me as I am a die hard football fan and thought of nothing worse than not being able to play my beloved sport. I have a follow up appointment with my contact lens specialist in April and have had no problems of late . As terrifying as hydrops is, its not the end of the world, it is manageable and can be treated. I am unsure whether I will have the transplant or not, that all depends on how bad the scarring is, but right now Im concentrating on finishing university. Thanks for all your help and advice, this website really helped me when I was first diagnosed, I shall keep you updated whenever I have news regarding my eye.
    Sorry again for the late reply.

    Sincerely

    Tom

  99. Jon Severs says:

    Great news it is improving Tom, stick with it! My right eye, three years later, is still improving even now!

  100. Reuben says:

    What a useful blog! Am 24yrs old with KC since 2000. For 1week I’ve had hydrops in my stronger right eye. My doc has recommended a transplant and am seriously thinking about it. I’ll keep you guys posted of my progress. It feels great to know am not alone in this frustrating world of Keratoconus. Be blessed y’all.

  101. Omar says:

    Hey didn’t read much of this forum but hope this helps. But I just got hydrops about 2 weeks ago on Saturday. I went to the hospital right away. They put me on what many are on steroid drops im guessing. I saw my eye doctor on Monday and he called up one of his friends which is a lasik and corneal specialist. They told me to discontinue the use of it. They have me on (Muro 128) 4 times a day, (Lotemax) 4 times a day for the first week and 2 times a day the next week, and also (Homatropaire) and (Combigan) both 2 times a day. Each drop has to be at least 5 to 10 minutes apart… About repairing my eye they are keeping me away from corneal transplant they don’t want me to do it. But what they did told me was about cross-linking to make the corneal much stable and harder. What I really have notice was the first day it was really noticeable a 2 weeks later today I am starting to notice little particles of glare entering the eye and its not as noticeable unless I shine the flashlight to my eye. I am still very very blind from the eye. Hope you speak to your doctor about those 4 types of medicine drops. Oh my Eye doctor put me on (Besivance) and told me to put a drop every hour. Of course after I left his office I went to the specialist and he sorta told me in a way the it was not needed. What I notice with Besivance was that I got eye mucus 10 minutes after using it on the eye. So I think its use to clean the eye. I was using a soft and hard lens piggy back on the eye. Oh and by the way I don’t know which of those drops make my pupils huge but one of them does that. I was scare when I looked in the mirror and saw my pupil take out about 90 percent of the iris. I think the doctor forgot to mention that part. So it normal to have a huge/gigantic pupil while on those drops.

  102. Shardul Singh says:

    Shardul singh

    hi
    i was diagnosed of keratoconus a year back in both my eyes.my left eye was pretty bad at that time and was told to do C3R in my left eye. after the C3R i immediately got hydrops in a months time and the vision was very blur. i presently living with just one eye’s vision.just before 3 months i was asked to do C3R for my right eye too, but i was avoiding it as much as i could. but few docs said me that if i avoid C3R the thickness of my cornea would be below safe limit and after that only option would be to transplant it.so i did C3R in my right eye too just 3 months before.During this time i also underwent a minor surgery in my left eye(in which a gas bubble was injected and sutures were put ) after which hydrops were gone leaving behind scar in my left eye while the vision remaining same(blur).But after C3R in right eye i directly got scar at smaller portion presently. i have even ordered SCLERAL lens for both eyes.
    after i went through your case, i am also thinking of avoiding cornea transplantation and waiting for cornea to heal by itself.

    i am 19 year old presently.and i am worried because every thing from initial stage to hydrop to scar within 3-4 months.
    ADVICE ME PLEASE

  103. Cesar says:

    Hello, I am from Venezuela and I am 54 years old. I had my cornea transplant when I was 24 and I also have keratoconus in my left eye since the same date. At the end of March I was on vacation in Orlando, Florida when suddenly I developed a hydrops. I went to two doctors at the United States, each one had very different opinions. They were both cornea specialists. The second doctor from Bascom Palmer Eye Institute, told me to use steroids four times a day and Timolol 0.5% two times a day. The last one decreases the amount of water that is inside the cornea controlling the eye pressure. He suggested patience because my improvement will be seen in the next 3 or 6 months. By this time he will define the actual situation of my cornea. A week later when I came back to Venezuela, I visited two other cornea specialists. Both told me that my case was a cornea transplant (second transplant in this eye), none of them told me to wait. I will be back to the United States in the following weeks to see again my doctor at Bascom Palmer because I have come to realize that his opinion was based on exams of all kinds and he seems to have a lot of experience. Also from what I have read in this page I have come to understand this pathology. Lastly I am really thankful for this blog and the amazing information it has provided. I will make sure to keep you updated when I come back from my appointment in the US.

    Thanks,
    Cesar.

    PD: From all my different doctors’ appointments through the years a cornea transplant is set to last for about 30 years.

  104. summer says:

    I’ve been wearing the rigid contact lenses for six years. Since last year because of the pressure of stuyding, I experienced blurred vision with my both eyes . I was over wearing my contact lenses for more than twelve hours. As soon as I was done with my final exams from last year, my vision went back to normal. Recently the last five days I’ve been experiencing a blurred vison with my left eyes,and it’s creeping me out. I still have it until now. I thought it might’ve been from stress, because I have midterm going on. Because of my blurred vision on my left eye , I skipped one of my midterm exams and stayed home to rest my eyes hoping my eyes will get back normal. I don’t know what my case might be. Could it be Hydrotroph?

  105. isaac says:

    last week two days before I graduated with hydrops and I freaked out they told me it should heal in about 6 months and this web page helped a lot and informed me what I’m in for the next few months and years even thanx :)

  106. isaac says:

    last week two days before I graduated i woke up with hydrops and I freaked out they told me it should heal in about 6 months and this web page helped a lot and informed me what I’m in for the next few months and years even thanx :)

  107. Ruth Rose says:

    I am the mother of a 23 yr. old disabled son, Kevin. Kevin was just diagnosed with hydrops in his left eye. It appeared very suddenly one day. I took him to a cornea specialist and am just now learning what I can about this condition. This happened 2 weeks ago. Kevin is non verbal and it is difficult for me to find out how he feels. He is letting me put the drops in his eyes and is wearing sunglasses as well. However, due to our lack of being able to communicate he can’t explain to me how he is feeling and I am noticing changes in him. He usually has a very healthy appetite but is barely eating since this happened. He is sleeping a LOT!!! He seems unhappy a lot of the time and not following thru with his usual activities. I have read hear in these comments that some of you had pain with this and perhaps Kevin is experiencing that. We see the specialist again next week, I will ask him if there is more that I can do for him than just the drops. I appreciate reading your experiences, it helps me to understand what Kevin is going thru. Thanks, Ruth

  108. Cesar says:

    Hey everybody! It’s Cesar, I went back to the doctor’s appointment this week. The doctor told me that I had progressed after 2 months. He said that I was getting better, he also told me that this was a long process and it could take up to six months or more. I still have the same treatment and I feel that I’m a 15 percent better. However there are many others that recover faster from what he said. But from what I have understand people are left with an scar which depending on it’s position it can cause an obstruction in the vision and you would probably need surgery. I hope no one has to go there.
    Take care everybody,
    Cesar.

  109. Chris says:

    Hi,
    I’m a KC patient from Kenya. I was first diagnosed in 1998. I had surgery on my left eye in 2004. My left eye was considerably worse them my right eye but now I have 20/40 vision in my left eye without RGB or any kind of corrective lenses. My right eye kept getting worse though I stopped wearing the contact lense on my right eye since the curve was too steep and I kept losing my contact lense. i could barely see through my right eye but I could still do everything like drive and read without corrected vision in my right eye. I woke up on Monday and my vision on my right eye was totally blurred. I went to see my surgeon and sadly I was diagnosed with corneal hydrops. Sadly I was schedule to have a transplant in two weeks and everything was in place and I was only waiting for a donor cornea to be sent to me from USA. I’m so distraught because from what I have read and from my doctor is that I have to wait indefinitely for this to heal before I can have my surgery done. My question is, can the swelling reduce in less than two weeks to allow me to have surgery? The irritation is unbearable, when will it end?

  110. Cesar says:

    Hi Chris, my name is Cesar (I’m from Venezuela) and I have had hydrrops for the last two months and a half. At this point is that my vision has started to clarify, which also means that the inflamation has reduced. My doctor said that this process lasts from three to six months. However from what I know it also depends on the person. But two of my ophthalmologists firmly stated that I couldn’t get a transplant while I am like this because the surgery wouldn’t be successful. It is important to follow the instructions of your doctor. You should try to read the posts of this blog as they are extremely helpful.

    My best regards.

  111. Ruth Rose says:

    @ Lillian Joyce, If you still use this site maybe you can help me as my son is disabled also and I don’t know what to expect from this hydrops. I asked for help here but no one responded and then I happened to see that you are in the same situation as I am. If you see this I would really like to hear how things went for your daughter.

  112. VEnkat says:

    Hi,

    Thanks for the wonderful article, it was very helpful. I was diagnosed with keratoconus hydrops 3 weeks ago after I developed excruciating pain, redness and swelling in my right eye. I went to my eye surgeon right away, who is helping me manage my keratoconus. He prescribed steroid drops to control the inflammation, antibiotic drops to prevent infection etc as I had developed 3 painful blisters.

    The vision is very cloudy, but 3 weeks into it and continuing the prescribed eye drops, the pain is very manageable and subsided. The cloudiness remains, the blisters have subsided. The doctor cautioned that if blisters break, then its even more painful .

    As the article outlined my vision in the right eye is beat, the brain has adapted to use the left eye. My left eye was stabilized using intacs & corneal crossing. Hats off to the doctor as it has improved my vision in that eye to 20/25 and my life style has also improved. I can now wake up and look at the clock to tell time.

    I am so glad that I have a wonderful doctor in the bay-area, who specializes in keratoconus treatments. I would highly recommend Turner Eye Institute (http://www.helpkeratoconus.com/) for anyone who wants to manage their keratoconus.

  113. Bob Evans says:

    Some good news for all of us longer term maybe ..

    Indian surgeon finds new layer in cornea

    http://www.telegraphindia.com/1130613/jsp/nation/story_17002533.jsp#.UcqcwZxCipA

    Bob

  114. […] from building up in the cornea. A tear in the layer can lead to a condition called corneal hydrops, a rare but nasty complication resulting from Keratoconus, which causes the cornea to take on a cone […]

  115. Daryl Parkyn says:

    thanks for the ineteresting article. I have had keratoconus for 20 years. I developed hydrops as a reaction to a sunsceen (Banana Boat) getting in my eyes. It was so painful. I’d never seen anything like it. The swelling took a long time to resolve itself. Blinking was almost unbearable. I have had not lasting damage from the hydrops but still have the KC. I wish mine would flatten out and give me supervision. Did you ask your eye doctor about drops or did he or she recommend it?.

  116. Danielle says:

    Hi,,,new here.typing with one ‘eye’..just got diagnosed yesterday..I’m Miserable!cant drive..work..read…I’m curious how long til I can see enough to work!!!
    Danielle

  117. Jon Severs says:

    I went back after a day with an eye patch. You feel sort of dizzy at first but the brain adapts very quickly! Getting back as far as possible to “normal” was crucial for me!

    Good luck

  118. Cesar says:

    Hi Danielle, my name is Cesar and I am from Venezuela you have to be very patient, I have had hydrops in one eye for the last four months since I was diagnosed with it. I have a corneal transplant in this eye, but right now I feel much better. The water is almost 90% gone and right now I’m waiting for medical instructions to know when can I wear contact lenses again. Most of the time hydrops recovery depends on the person, the average duration of it is 3 months. There are other cases in which it may last longer. I explained above my case as well as the treatment, you should see the doctor and wait calmly. This will improve.
    The best of lucks and if you ever need anything I am available for any questions.

  119. Lindsay says:

    Hi Danielle,
    I was diagnosed in early August with my hyrdops at the Manchester Eye Hospital. I had the first four weeks of hell, could not handle light or dark, was forever bumping into things or missing the cup when making tea as my depth perception was totally shot. It was horrible and I was really down as I thought it would never get better.

    I work on a computer and am customer facing all day at work which was really hard as I could barely open my eyes to the strip lighting at times. As soon as I explained it to my boss and showed them some images and explained the condition, they were really flexible and i took a total of 3 separate days off in the first month.
    I couldn’t wear makeup.. or even see to put it on for the first 6 weeks and looking in mirrors reflecting light back was awful.
    I slowly realised that if I put my drops in and took my pain meds an hour or so before getting up and out of bed in the morning it worked well and took the edge off. I wear polarised sunglasses anyway and these were a savior when out and about. I also was strict with going to bed early so I could give both my eyes a rest – my left one was getting really tired from doing all the seeing!

    Slowly learning how to do things again takes time and I am just coming up to 2 months in with hydrops in one eye. I can work again and back to driving. i made my consultant do a vision test on me for driving and he passed me which was great. I would be lost without being able to get about, but still cant drive at dusk or night as my night vision isn’t too good.

    The main thing I found was however frustrating, upsetting, annoying and quite frankly, life stopping at times, hydrops is, it does get better. It has taken me 6/7 weeks to get to a point where I can work at a screen, not look like I am crying all day and put on make up without looking like a clown.. all positive little steps.

    Hope yours progresses quickly

  120. I am really thankful to the holder of this webbsite who has shared this great paragraph at at
    this place.

  121. This is my second week with hydrops. Definitely sucks, doesn’t it? I woke up Wednesday morning, September 25th, with extreme burning in my right eye. Since I have Keratoconus, I didn’t think much of it, as there’s been problems off and on with my eyes since I was first diagnosed back in 2004. That morning, when I put in my contact (Scleral lense), I noticed that the bottom right of my vision was cloudy. Again, didn’t think much of it, just figured something was wrong with the lense.

    Went to work all day expecting the cloudiness to dissipate, but it didn’t. Got home, cleaned the contact, put it back in, still no difference; bottom right of my vision, cloudy. However, since I wasn’t feeling any pain, I still kind of thought it was my lense.

    That night before going to sleep, I washed my face and brushed my hand against my eyelid, and a sharp pain ripped through my eye. When I looked, I saw now my entire iris was opaque, and that’s when I started realizing that there was a problem.

    I really empathize with you all who have to drive to work every day. Can’t imagine doing it, as the vision in my eyes are basically useless, especially the right one. At the same time, I’m a bit in a bind myself as I live and work in Korea, and the doctors in this small province speak limited English, so I’ve gone online to try to learn as much as possible. The doctor at the major university on the island, a cornea specialist, prescribed four different types of eyedrops for my eyes. Not entirely sure what they are, though I think one is a steroid, one an antibiotic, and one a saline drop. He said the hydrops would clear up in two weeks, but as this is the eighth day, I’m highly skeptical, particularly since no one who responded here, or other websites, noted such a quick healing time. Who knows, though, maybe people with hydrops that clear quickly just don’t bother to relate their experience online.

    I’ve seen that there are several surgeries that relieve the problem quicker, but I’m definitely don’t planning on going that route. All of them sound way too invasive, and if hydrops dissipates on its own, I’ll just wait it out. I know I’ll be extremely surprised (pleasantly surprised, but *extremely* surprised) if this resolves itself in the original timeframe the doctor projected, which would be the next seven days. I go back to him this Friday, October 11th, and I’m curious to hear what he says about the progression.

    This is a real inconvenience, but I guess it could be worse. Besides that first 24 hours, I’ve had no pain in my eyes beyond the drops, which sting. My eyes aren’t red, and besides the fact that my normally brown eye looks sort of bluish in the right light, there seems to be nothing particularly wrong with my eye except for the fact that my contact lense doesn’t work.

    On another note, I find it interesting that usually when people have trouble with their eyes, its the right one that’s seems to be worse off. I’d never thought about it before, but most testimony regarding this ailment seems to find the right eye is the one that experiences hydrops, and the right eye generally being the one with the weaker vision and more advanced keratoconus.

  122. Jon Severs says:

    Haha yes the 8 days recovery time I have seen a couple of people mention. The truth is that hydrops vary in severity so there is never a set recovery time. Sounds like you have had a decent sized tear – it sounds really similar to mine. That took six months to get some vision back then 18 months later I have pretty decent vision back. Not sure if you have the same scleral measurements but my right eye was F9 and after hydrops it was F6. It has now settled at F7. So pretty positive result – well worth sitting out the recovery rather than opting for surgery.

    Quite a few people on here have been offered surgery in the few weeks after hydrops. I am reliably informed this is crazy. Fitting a donor cornea when the eye is still swollen is insane – as when the eye returns to normal the donor cornea will clearly not fit!

  123. kossa says:

    hi, I have kerataconus, ive had cross linking done on my left eye. about 5 days ago, the vision of my left eye has gone cloudy-ish. I have gotten an appointment to go see my doctor on friday, in a couple of days. I was wondering, how long does it take for hydrops to develop? as in does it get worse from the time you notice the cloudyness? because it is not too bad right now, but im wondering if it’ll get worse going forwards. any help on this would be appreciated, as im somewhat concerned over this. thanks.

  124. Jon Severs says:

    Not sure how it is for others but for both mine I woke up to cloudiness and it got to its worse point within about three or four hours

  125. Hey Kossa, I’m in the fifth weeks of my hydrops. Mine started small, but I think I may have made it worse not knowing what it was that night when I brushed up against my eye too hard while washing my face.

    Ah well, I’ll never know now. Basically, my vision is cloudy, though I can still see some images. My sight in that eye was always really bad, though. The main thing is right now I can’t wear my contact, which is the more important thing for me.

    Not many people who commented here also seemed to finally respond again when their hydrops was over, so it’s hard to get a good idea of how long it lasts on average. I know the guy who made this site, Jon Severs, hydrops laster for more than a year. I’m hoping mine doesn’t last nearly that long. Sometimes I’ll think my vision seems less blurry, but as long as I can’t wear the contact, it doesn’t matter.

    Good luck!

  126. Tom says:

    I’ve been living with Keratoconus for 40 years, progressing from glasses, old-fashioned Sclerals, RGPs and for the last 18 months, mini-sclerals.

    A friend of mine of a similar age has been wearing mini-sclerals for longer than I have. He recently had his first episode of Corneal Hydrops, and is slowly recovering after a number of months.

    I’m now having problems with one of the lenses. My eye changes power by SIX diopters under the mini-scleral during the course of one day’s wearing. This is under investigation, but must be that the cornea is changing shape during the day due to the presence of the lens. I’m now worried that this be a precursor to Hydrops.

    Thoughts welcome.

    Tom

  127. Hey Tom, hopefully it’s not hydrops, but at the same time, hopefully it’s not something worse! Hydrops is frustrating enough, but at least it seems to clear up eventually.

    You said your friend is recovering after a couple of months? What’s the timeline like for him? Two, three months, or half a year or more?

  128. Tom says:

    > Hey Tom, hopefully it’s not hydrops,

    My problem isn’t that – yet. The I’ve worn old huge Sclerals and small RGP lenses for years and never noticed any “power change” during the day. The difference between the RGPs and the Sclerals is the latter cover the cornea and are pretty much hermetically sealed on. The cornea is bathing in the same liquid for 14 hours a day. The lenses can “suck” on the cornea, deprive it of some oxygen and soak it in mild carbonic acid.

    The only way the power can change is if my cornea is swelling or otherwise changing shape. Daily. Every day it changes (somehow) and then recovers overnight, 365 times per year. In mechanical systems that sort of flexing can trigger a “fatighe failure”. I’m not sure what triggers Hydrops, but it is a mechanical rupture of that membrane, and the daily shape changing might provoke it.

    I noticed “Vinod” said above:

    > But I read somewhere that Hydrops are more common in those
    > who used scleral! Any truth in it?

    That’s my current concern as my friend went 20-30 years without Hydrops and then had his first one a year after starting on Sclerals.

    > You said your friend is recovering after a couple of months?

    My friend is coming up on about 5 months and is regaining vision. His cornea is still obviously cloudy, but he can get useful vision through it now. As far I can tell his is a “textbook recovery”.

  129. Tom says:

    I thought it mainly happened during “acute” Keratoconus – while it was actively progressing. So I’d expect it to happen to younger people, and not people in their 50’s after the corneas had stabilised (like my friend who has just had one). I’ve located a few documents.

    This one gives a median age of 33.6 for onset of ACH:

    http://www.rcophth.ac.uk/core/core_picker/download.asp?id=1324

    This one is “Inverse relationship between age and severity and sequelae of acute corneal hydrops associated with keratoconus”. It is a report from Saudi Arabia where the average ago of corneal transplantation is 19!

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1955649/

    So I’d be interested in the age of people getting Hydrops, and what lens types they were wearing.

  130. Habiba says:

    In response to the last post by Tom.
    I don’t think wearing scleral lenses brings on hydrops. Two weeks ago i was told i have hydrops in my right eye and i have never worn scleral lenses (tried but just couldn’t do it!). Im 22, have had KC since 16, had crosslinking done in January and am piggybacking with soft lenses + RGPs on my left eye. I have never worn a lens in my right eye because it is too steep and have also been told by Moorfields to get a transplant done – for two years now. At first i was very hesitant but now I’m hoping to go through with it once my cornea heals, as i know of people who have had successful transplants and i’ve become very impatient with KC now.
    Anyway Hydrops has been SO painful and like others the past week it took hours before my eye can open comfortably but right now it is even more sore that every time i blink it hurts so i’m trying my best to keep it firmly shut.
    Thanks Jon for such an informative site, and for everyone elses responses, it has really helped to know that SOMEONE understands my frustration!

    I have a an appointment on monday so im hoping the doc can tell me more about whats going on with my eye right now.

  131. lesly arredondo says:

    Hello there well I just got this Hydrops
    On my right eye and is scares the heck out of me :( and it sure hurts !!!!

    My question is how long does it take to have my vision back????

    Thanku ♡

  132. Jon Severs says:

    It depends on each case I am afraid – but it can be a good thing in the long term. You will adjust to vision in one eye in the meantime. Good luck with it and stay positive!

    >

  133. Lindsay says:

    Following the comment above from Todd, I am now coming up to 7 months after the Hydrops in my right eye. The cloudiness has reduced but there is a definite line and blurriness around the area that was affected (albeit only about 2 or 3mm wide).

    My light sensitivity has reduced, although it is always pretty sensitive, and my night vision is still pretty poor. I still find myself bumping into things and am not driving at night, especially not on motorways as the glare is awful.

    I am coping really well with just using one eye, no major day to day problems apart from a slight loss of spacial awareness of things on my right. It has lead to some embarrassingly funny moments (I work as a Stage Manager in theatre) during scene changes or actor quick changes!

    i saw my consultant last week who was very happy with the progress and talked through the options:
    1 – leave it alone and see how it heals naturally (I stopped taking all drops 3 months ago as I felt they made no difference and I had no pain etc)

    2 – add my name to the waiting list for a transplant. The waiting list is 18months to 2 years so it wouldn’t be an immediate surgery. he did say that they would be willing to try a partial thickness transplant first, but when operating, if a full thickness would be needed, they would do it there and then.
    I had been advised that donor corneas can last 20+ years but also can need replacing after 5 too.

    3 – wait for another 6 months and be reassessed then look at the possibility of fitting a new rgp lens or something similar. This would not harm or speed up the recovery of the hydrops, would only ease the strain on the left eye and also possibly gain some vision back in the right. He did say that this could be pointless as the fit of the lens may not be possible.

    I have weighed up the pros and cons and as I am functioning fine at the moment, I discussed it with him that I would wait for 6 months to try the new lens option. But definitely waiting 3/4/5 years and see what the situation is then for a possible transplant.
    He agreed and thought that as I am fine to drive, work on computers, do my day job and having no serious problems, that this would be the best option.

    it is a long road to recovery and as Jon says, everyone is different and it really depends on where the tear happened in the eye which results in what you can see/do/cope with.

    How are everyone else’s Hydrops episodes developing?

  134. Hey Lindsay, I’m currently in the four and a half month period of hydrops. I don’t like saying I’ve “gotten used to it”, but I suppose I have. I don’t normally drive, but when I went home in January, I drove almost every day, and had no major problems even though I constantly worried that the contact in my left eye would pop out on the highway or something, leaving me suddenly blind. Thankfully, that didn’t happen, but I did make sure to avoid driving at night.

    The swelling in my eye never got too bad, and it has been shrinking each month. The actual hydrops has remained persistent, though, and my eye still looks blue. I actually never did have pain, just a little discomfort. And I hate to sound vain, but one of the main reasons why I’m dealing with this episode so well is because my eye never got as bad as some people here have described. I wouldn’t be taking this well if I thought I looked awful, but having one brown eye and one blue/opaque eye isn’t so bad, and some people have actually said it looks kind of cool. I’m still young enough that appearance is quite important, and one’s eyes are usually the first thing we see of each other. So I am glad that beyond the fact that it looks blue, nothing else seems wrong with it.

    Overall, I feel that doctors don’t know what to make of hydrops. I used to be frustrated by my experience in Korea because I don’t speak Korean and my doctor speaks very little English, so I often thought I wasn’t getting as much information as I would have liked. But when I went home in January, my doctor, and the eye surgeon, didn’t offer me any new information that I hadn’t learned on my own through google. And they both seemed surprised that it was taking so long to heal, which really surprised me since six months to a year seems normal from what I’ve read of people’s experiences online.

    They did say there’s no rush in getting surgery, which I was happy about. I’d be satisfied if I can go back to wearing a contact in the next two or three months.

  135. Bob Evans says:

    More on the same subject
    First thing I’ll say is everyone seems to have a wildly different experience of corneal hydrops
    I can only tell you what happened to me.
    Background; I’ve had KC for probably thirty years and in both eyes. Been wearing every type of contact lens known to medical science including full-size sclerals (although I really couldn’t get on with those) and now wearing some high-tech soft skirted scleral lenses with reasonable comfort and really very, very good vision (for me) although I can’t wear them for more than a couple of hours or so at a time which is rather a nuisance if you’re trying to hold down a job.
    I suffered hydrops in my left eye over two years ago. I’m still convinced that it was down to some soft skirted/hybrid lenses that I’d been prescribed and I one day pulled the lens out of my eye rather sharply and felt a sharp pain. A couple of days later I woke up with the infamous cloudy cornea. It may have been coincidence but maybe not – I’ll never know.
    Anyway, the hydrops “mark” was sort of from eleven o’clock to 6 o’clock across my eye in a vertical stripe. I had quite a lot of pain at the beginning and as I’ve said here before it felt like a bad red wine hangover pain in intensity but of course in your eye rather than in your head. The pain was almost constant for many weeks and I had a rough time. I wasn’t able to wear a lens in that eye for maybe six months and eventually was steered in the direction of sclerals, then onto hybrid/soft lenses.
    The white scar eventually faded away over a period of maybe a year but my optometrist tells me that it has left a scar across the cornea which is now affecting my vision in that eye. Nothing they can do about this short of a graft (and a deep graft at that).
    First the good news. The hydrops has left me extremely shortsighted without any contact lens in. That means that without wearing a lens, in my left eye I can read a smart phone or watch video/television on the phone at a distance of about 2 inches. Rather odd but it allows me to work a bit from a tablet and I can now do at least something when not wearing lenses (my job is computer-based). Just got a Samsung Note 3 (with the stylus) and it’s great.
    The bad news: I still get episodes of pain from my eye. I’ll best describe this as “twinges” of sharp pain (on a scale of 1 to 10 only maybe 3 or 4 but enough to make you jump). After a few seconds / a minute this pain passes and it might not occur again for a couple of days or more but it certainly does re-occur. Also cold wind or bright sunlight can cause a big sharp pain in that same eye.
    I’ve started wearing a pair of industrial safety glasses (glasses not goggles) when outdoors – they fit my face well and seal off most of the cold wind. The downside is people stare at you in the street thinking it’s the “Google Glass” !
    So in summary, I can wear my lenses most of / some of the day; some days are good and others are bad. My contact lens-corrected vision in my hydrops eye is OK and I’m still able to drive. I do though get sharp short pain from my hydrops eye. Indeed for the first year or so I was taking painkillers regularly and after a time I decided not to take any more and just put up with the pain as I think long-term use of painkillers is not a good idea.
    Not sure where I go from here yet.
    My approach has always been to not have a graft if I can possibly avoid it.
    Maybe I’ll reach that point soon though.

    Bo

  136. Tom says:

    Bob Evans wrote:
    > I one day pulled the lens out of my eye rather sharply and felt a sharp pain.

    When I started wearing mini-sclerals, my Optometrist warned me that I should never pull on the lens, but should always “break the suction” first. That means pressing on the white of the eye with a finger on my eyelid just next to the lens. When an air bubble gets under the lens it is safe to pull out.

    He warned that people with corneal transplants had managed to dislodge their transplants by pulling on mini-sclerals.

  137. Karin Helt says:

    First of all, I would like to thank everyone who has shared their personal stories regarding Keratoconus w/ Hydrops on this blog. I am a Human Services professional with a special needs, non-verbal client who is living through the condition and the information you have shared has been a wonderful insight into his experience. I am new to my position (1 week!) and just beginning my research. He is in the healing phase of Hydrops, but I am not sure how far along. Can anyone share environmental conditions that offer beneficial effects, i.e., lighting, etc.? I am also interested in naturopathic &/or homeopathic remedies,therapies that may help. Due to my client’s cognitive functioning level, surgery, contact lenses, etc. pose a significant challenge for them to manage. Again, Thank you so much for your helpful insights and continued healing to all.

  138. Jon Severs says:

    For me – light was a real problem and dark sunglasses really helped. Apart from that the occasional cold compress helped when the pain was bad. Hope he gets better soon!

    >

  139. Jon Severs says:

    Oh I also made myself an eye patch and wore it for the first month due to the light hurting it – worked wonders!

    >

  140. hi…..i had this horrible experience….2 weeks before…my eyes turned whitish n i coukd nt see anything…everything was cloudy…..i had a lot of pain….i thought things will turn better but it was too slow…one day it was better but the nxt day it was worse,….tearing is continuing n pain is sometimes less sometimes more…..i ant see tv…n laptop…more n if te day is sunny..i cant get out of my home…..i just wanted to ask one thing..
    i have read from your xperience that it will get better….but even after becoming better can things become more worse again???
    will this phenomenon hapen again n again?? how much better my eyesight can be (if it can be better)
    thnks for sharing your experience …i felt so relived after knowing that kerotokonus is also common in others and its not appening to me only…

  141. Hello Sanjana, and good luck! I think most advice on hydrops is just patience. I’m on my 6th month of dealing with hydrops, and my sight is clearing little by little. I look forward to the day I can wear a contact lens again. I’m waiting for my doctor to give the go ahead, but it would be great if this happens in the next month or two.

    Hydrops is a real bummer, and I’m surprised that there’s not a more effective treatment for it. I guess because such a small percentage of the population gets it, there’s not a ton of research going into the affliction.

    Again, good luck, and be patient!

  142. Venkat says:

    Sanjana, you are not alone when it comes to KC and hydrops. I had hydrops last year, as Todd mentioned patience is key. My eye surgeon gave me few eye drops to help manage the swelling and discomfort. My vision cleared up slowly. Once the hydrops ( usually a tear in the corneal) heals it is bound to leave a scar. The location and thickness of the scar could hamper your vision.

    Last month I had my corneal transplant as the scar was in the middle and chance of recurring hydrops was high as per the surgeon. So far doing well.

    I am seeing Dr Turner & Dr Patel from Turner Eye Instituate (turnereye.com) who seem to be experts in managing KC and allied symptoms

  143. Olly Cripps says:

    Hello I woke up this morning with terrible pain in my left eye. Every time I blinked it felt like there was a razor blade in there! It’s been about 3 hours now and pain has nearly completely gone… but my vision in that eye is absolutely terrible.

    Driving to work was scary and reading this website hasn’t been easy. It feels like my keratoconus has gone into overdrive. However, there doesn’t seem to be any clouding at all in my eye? So perhaps it’s not hydrops?

    Is there anything else that could be causing this. Really pray that it’s only temporary.

  144. Sun says:

    Hi,

    Firstly I just wanted to say how useful and reassuring I’ve found this blog, thank you. I’ve currently been suffering from advanced keratoconus in my right eye, for the last 3/4 years. It went undetected for a long time, which hasn’t helped and the condition has gotten progressively worse. I’m a pharmacist, 26 years old. I also had the experience of the sudden appearance of hydrops in my right eye. It’s so distressing and frightening. I’ve been to the A&E and saw an optom who gave me steroid ointment and antibiotic ointment. Five weeks on, there is no change. The watery eyes and light sensitivity seems to be getting worse. I was meant to see an opthamologist at the hopsital last week, but they cancelled my appointment. It’s really frustrating. Thankfully my left eye is okay and I am able to see fine out of it. But knowing the condition, keratoconus, is bilateral, it’s worrying that the same fate will occur in my left eye. I’ve been fitted with hard contact lens, but they just wouldn’t sit properly in the eye due to the advanced stage of keratoconus, the cone is just too obvious. I was then trialed with a sclera lens. But this did not help the vision. I saw a specialist who suggested I consider a corneal graft. But then this happened. And now I guess it’s watchful waiting for it to improve. Right now, it just feels as though it is getting worse. As a pharmacist, I can do my job, but the lights don’t help my vision, as my eye keeps streaming, so I’m constantly having to wipe at it. I guess what I want to know is whether hydrops can get worse? It’s the fifth week, and to be honest the cloudy appearance seems bigger than when I first noticed it five weeks ago…

    Sun

  145. Jon Severs says:

    Hi there,

    Yeah the light sensitivity can be a real pain. I invested in some dark, wrap around sunglasses which really helped. For the first month or two i actually cut a piece of cardboard the shape of the sunglasses lens and blocked out all light altogether. It meant that i was a lot more comfortable when out and about!

    As for whether it gets worse, you’d need to ask a professional, but in my experience, it was as if i had a leak in the eye and things seemed to get progressively worse until that “leak” had exhausted itself (i.e. my cornea felt “full”. I guess that was about the two month mark. For the next 5 months or so there was no change at all, but every few months after that things got steadily better.

    As for the second hydrops episode, it is really rare. And just as random as the first. Mine happened two years after the first. I know of someone else who had it exactly a year after the first. Most never get a hydrops in the second eye.

    I wish you luck with it all. I need to update the blog actually to give my current situation: my eyes are pretty good, i get quite weird ghosting in very bright light onto whites (but very good vision in bright light generally) and also i struggle to see well in very overcast conditions. My left eye is fully healed from the hydrops and gives me few problems. My right eye is useless in daylight as the scar from the hydrops is too large, but at night, when my pupil is larger, it sees great. I also have better vision out of the right eye without the lens than my left eye without the lens. These are quirks probably bespoke to me, but you may develop your own quirks and ways of working that work for you. If you need a transplant in the end, there has been some great advice and stories on here that makes me more comfortable at the thought, though thankfully having sat through poor vision for 12-18 months after both hydrops (and wearing dark sun glasses at my desk so i can read the computer!) things look OK currently.

  146. Tom says:

    Sun said:
    > It went undetected for a long time, which hasn’t helped

    Which country are you in where this was missed? And you a Pharmacist?!

    > the cone is just too obvious

    You sound like you were a candidate for CXL. When your Hydrops clears up this may still be a good option. If keratoconus starts in your other eye this should stop it cold:

    http://en.wikipedia.org/wiki/Corneal_collagen_cross-linking

    > I was then trialed with a sclera lens. But this did not help the vision.

    There are lenses available that should be able to fit on any eye and correct any distortion. Most contact lenses only correct the spherical abberation. Some lenses correct the astigmatism as well. Those are only the first two in a series:

    http://en.wikipedia.org/wiki/Zernike_polynomials

    It is possible to measure and correct the rest of them. This came up on a Keratoconus Thread I follow here:

    http://whrl.pl/RdV32C

    It refers to this site:

    http://laserfitlens.com/

    Of course they can’t fix the opacity of any scarring, and you’ll have to wait for the Hydrops to heal itself.

    I have one “good eye” that gives good vision with small RGP lenses. My other eye can’t be corrected as well. My optometrist has been bugging me for years to have that one transplanted. I’m seriously considering the above lenses (which needs a trip from Australia to Texas) prior to any surgery.

    Tom

  147. Guru says:

    This is a very good site that covers experiences with hydrops and how it is being managed
    I have been with hydrops in my right eye for the past 8 weeks now. I am on hypersol drops,FML drops& hypersol ointment. I still have cloudy vision but is slowly improving. For the last 1 week I am having some irritation and watering from the eye. Is it common.also I am not wearing contact lens now when can I wear one
    Finally is scleral lens a good option once the hydrops clears

  148. Sun says:

    Hi Jon,

    Thanks for the advice. I’m currently using saline drops and drops to dilate the pupil. I have to keep telling myself ‘it could be worse’. I’m due to see a consultant it a week, as they’re monitoring the progress. Also, I’ve dug out some sunglasses – hopefully I can get about with my daily routine. I’ve had to take two days off work because it got so bad, hopefully back to work Thursday.

    Sun

  149. Sun says:

    Hi Jon,

    Thanks for the advice. I’m currently using saline drops and drops to dilate the pupil. I have to keep telling myself ‘it could be worse’. I’m due to see a consultant in a week, as they’re monitoring the progress. I’ve had to take two days off work because it got so bad. I wouldn’t be able to do my job and wear sunglasses, so we’ll see how it goes. At least when I’m at home I can go about doing things with sunglasses on. At the moment I’m taking it a day at a time.

    Sun

  150. Guru says:

    Usually what is the size of the tear during hydrops dies anyone know
    Also is sutures to the tear a good option or should u wait for the tear to heal by itself

  151. Sun says:

    Hi, I’m not too sure. I reckon the torn cornea can vary from patient to patient. I’ve had acute hydrops for almost six weeks now. I struggle to face daylight, its just too bright. Its very frustrating. Hope it gets better soon…

  152. This is a question for anyone whose hydrops have resolved and are back in their contacts. This is my 7th month, and my eye is still opaque, though clearing. I guess in another two or three months all that will be left is the scar. My doctor gave the go ahead to try my scaleral lens, which I did. My vision has greatly improved with my contact in my eye, almost being back to normal, but the lens in my eye caused a lot of discomfort to finally become a bit painful, so I took it out after about three hours. I’m wondering has this been the experience of people who tried to go back to their contact lens after not wearing it for several months?

    I figure I’ll keep it out of my eye for another month, try again in June and see if the affects are the same, then try again in July. I would just ask my doctor, but those of you who know know that I’m living abroad, and the English language ability of my doctor is limited, so explanations are difficult.

  153. Jon Severs says:

    You should wear it for 2-3 hours each day for two-three days, then up the wear to 3-5 hours for the next few days, then 5-7 hours a few days after that. from then on tolerence is different for everyone – i wear mine for 15 hours a day no problem.

  154. Chris says:

    Hi guys I am 30 and from South Africa, I was diagnosed with HYDROPS in my left eye this week. On Saturday morning I noticed a cloudy haze when I put my scleral lense in, but like many others I also thought it was the lense that was dirty.
    The ophthalmologist says that it is still in its active stage and we caught it pretty early. He has given me a saline drop and antibacterial drop.
    I use the saline every two hours, including at night as I set an alarm for every two hours of the day. The antibacterial is used 3 times a day.
    He feels that the conservative approach may work well, but in ten days he will decide if the SF6 injection is required.
    The hardest part of this is the psychological and emotional battle I am facing. I am a very active guy and contact sports are completely out the window now. Furthermore the physical appearance with people asking what’s wrong etc etc is even more of a hassle.
    I am also a medical representative so my job entails driving, parking is an issue and I haven’t driven at night since.
    I have also not worn my lense on that eye since I realized it could have been a Hydrop.
    I am just trying very hard to be patient, with this healing process and I hope the cloudiness is at least cleared very soon.

  155. Sun says:

    Hey,

    I’ve got acute hydrops in my left eye at the moment. I’ve had it there for 9 weeks now. But patience is the answer. Mine has cleared up a lot. There is a slight grey/blue appearance remaining, but it has largely improved. It is frustrating, I know, but do keep using the drops you have been given. I hope you have a speedy recovery. All the best.

  156. Chris says:

    Dear sun
    Thank you for the support, I am using the drops religiously. The many down moments throughout the day are difficult. I am trying above all else to be positive. Has the swelling gone down at all in your left eye and if so how long did it take.
    Chris

  157. Sun says:

    Hey Chris, I know what it feels like… I’m a pharmacist and I job is customer facing and involves giving travel vaccinations. So I couldn’t even do that for a while. My eye improved in about 8 weeks since it first appeared. I’ve heard that it can take a couple of months to clear, for other people it can take longer. I found that wearing sunglasses helped, it was suggested by someone on here – that helped a lot, I was finding it difficult to tolerate natural daylight! Keep the positivity up. It will clear up, it will just take a bit of time…

  158. Sun says:

    Hey Chris, I know what it feels like… I’m a pharmacist and my job is customer facing and involves giving travel vaccinations. So I couldn’t even do that for a while. My eye improved in about 8 weeks since it first appeared. I’ve heard that it can take a couple of months to clear, for other people it can take longer. I found that wearing sunglasses helped, it was suggested by someone on here – I was finding it difficult to tolerate natural daylight! Keep the positivity up. It will clear up, it will just take a bit of time…

  159. Chris says:

    Thanks again guys.
    My optometrist has suggested using an HD contact lense, soaked in the saline solution to help with the oedema, as a lot of the drop gets washed out with tears when applied. It does make sense, does anyone have any opinions on this I suggestion.
    Chris

  160. Sun says:

    Hi Tom,

    I initially went to a high street opticians who lost my records (twice) which delayed the whole thing in the first place and when I finally got referred to the hospital – they couldn’t figure out why I was there as no one had sent across a referral letter. What a complete disaster.

    I live in the UK, what about you? Yeah I’m a pharmacist – it made running the travel vaccination service really hard. My hydrops have settled, no symptoms. I had to take a week or so off as I couldn’t tolerate natural light, never mind the crazy bright lights in the pharmacy!

    At the moment the consultants are going to trial me on hard contact lens. There take on it is… After the hydrops the cone has flattened therefore the lens should fit better. However she did also mention if there were changes to the cone then they’d consider the cross linkage procedure. Should be going back in a few weeks to find out more. Oh and thanks for all the links – very useful :)

  161. Chris says:

    Hi guys it’s been almost two months since my hydrops in my left eye, I have been using a saline drop and undergone two SF6 gas injections plus venting incisions. The incisions were made to drain out fluid from 3 microcystic bullae in the eye. To date I have regained about 5% vision. The OCT scans reveal quite a severe tear just inferior to the pupil. After my last SF6 injection it did clear up but as soon as the gas was absorbed it seems that the fluid is filling into the cornea again.
    I have pretty much ran out of ideas and opthalmologists. I have another scan in two days will keep you guys updated.
    Regards
    Chris

  162. Chris says:

    Had my OCT scan today, tear has not healed, liquid still filling into eye. Ophthalmologist suggested 3 weeks to allow tissue to heal before making a decision on what next step is.
    Chris

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 110 other followers

%d bloggers like this: