"Recurrent Corneal Erosion Syndrome"
It's 8pm -- well after dark, where I live -- and I'm typing this with my sunglasses on.
This is a story about my experience of Recurrent Corneal Erosion Syndrome.. it's a bit long and overly detailed, partly coz it's for my mum (hi Mum!) and partly in case some other poor bugger gets RCES and stumbles across this page. I'll try and put in good headings in so you can skip the bits you don't wanna read.
What It Is
Recurrent Corneal Erosion Syndrome means that a flap of the clear skin on my cornea was torn at some point in the past. Cornea skin can stick back down fairly quickly, but might take 6 or 8 weeks to become fully reconnected. If you're unlucky, then for some reason the flap of skin can attach to your eyelid overnight, and when your eye twitches the flap tears back off again.
The Wikipedia article has more info.
How It Started
About three years ago I woke one night with a bit of pain in my right eye. I'd been routing some MDF earlier that week and I guessed that I'd rubbed a bit of dust into my eye.
The soreness went away after an hour or two, just like it did a month or two later when it happened again, and again the month after that. I'd wake in the early hours, sit up for a hour, then go back to sleep. Sometimes it would still be bugging me the next morning, and sometimes it'd happen a few nights in a row.
I went to a few different GPs at varoius times; a couple had a look at the underside of my eyelid but couldn't see anything, and others guessed that my glasses prescription was wrong, or that I needed antibacterial drops, or whatever. It always went away, so in theory, all treatments (including doing nothing) were equally successful.
Getting Worse
Then, about six months ago, I had a full two days of continuous pain, and resolved to more seriously pursue a solution. I went onto some antibacterial drops and the problem went away again. Same thing happened next time. Then about a month ago it flared up again and I got another prescription of drops and cream.
Unlike doctors before him, this GP now made a confident diagnosis: he told me I had a stye deep under my eyelid, and that was occasionally releasing a bunch of infected gunk. I was pretty happy to get a clear diagnoisis, and the permanent cure, according to that GP, was just to not rub that eye, and the stye would go away.
Brilliant, I thought. I got back on the antibacterial drops and nightly cream, and started to religiously avoid touching my eye. It's harder than you think, especially since the nighttime antibacterial cream sticks in your eyelashes and you can't rub it out in the shower the next morning.
Hurting Hurting Hurting
Four weeks later, and no real improvement. On Wednesday my regular morning scratchiness stuck around for longer that usual, so my daughter and I were late for our Wednesday morning preschool. At work that afternoon my eye hurt continuously, and just after making it home that day, the pain got so bad my eyes just cranked themselves shut.
I managed to force them open that night to jam in some drops and cream, but didn't get any sleep. The only thing stopping me from doing a midnight run to the hospital's emergency room was the current Australian government (whose policies don't include well-funded hospitals).. I expected that I'd be kept waiting around the whole night anyway.
The next morning my wife took me to the first GP we could get an appointment at, which happened to be across the road from the hospital. With pain jamming my eyes shut I was completely blind and M--- had to lead me around. The GP basically just called the hospital's eye clinic and booked us in there, then we borrowed a wheelchair and wheeled over. A hour or so later a nurse gave me a few drops of local anaesthetic and I could open my eyes again.
Another hour later and the opthalmology registrar was looking at my eye with a Big Machine With A Bright Light (BiMWABL, I'll call it), and I was diagnosed with "recurrent erosion syndrome". The registrar taped a pad against my eye, very firmly, gave me an appointment the next day, and sent me home.
Anyway, once the local anaesthetic wore off the terrible blades of pain started whirling in my eye again, but having an actual diagnosis (from an actual expert) was surprisingly buoying. The night went very slowly -- it hurt too much to lie my head back, so I dozed through much of the night sitting in a chair at my kitchen table, slumping forward onto my pillow on the table.
Into Hospital
The next day was Friday and again some local anaesthetic mercifully took away the pain for a few hours, long enough for the opthalmology consultant and registrar to confirm the diagnosis. The treatment for recurrent erosion is some eye drops, and spending several days not moving your eye or eyelid while having a pressure pad on it, so they booked me into a hospital bed.
We waited in the eye clinic about 6 hours. Once the local wore off, opening or moving my good eye moved the bad eye to make me yell with pain, so I was effectively blind the whole time. We moved up to some couches in a ward and waited another hour or two. M--- left to pick our children up from daycare and I was eventually led to a bed and settled in.
Around midnight (I guess) I was moved from that bed to another, which was great, as the first bed was in a room with several other people including one poor guy who I think was recovering from a heart bypass, who had dementia and spent most of the night calling out stuff like "Where am I? Can somebody help me? I feel awful sick.". The new bed was in a room on its own. I kept waiting to get booted in favour of a private patient but it never happened.
Visions and No Sleep
If you're paying any attention to what is around you, it's really hard not to flick your eyes in the direction of some new sound, even when your eyes are shut, so I had to really zone out from the environment to keep my eyes from twitching around.
The pain made it impossible to sleep. If I could keep my eyes still for a while, I could doze off, but the instant I started slipping into REM sleep my eyes would move and the slashing pain would wake me again.
The combination of zoning out, no sight, and no proper sleep led to some really weird visions. I spent long minutes looking at a tree trunk, or watching a big boat pass by. I guess I knew they were hallucinations the whole time. On Saturday M--- dropped in a music player my brother had loaded up for me, and I spent a lot of that evening watching crazy new music clips playing against my eyelids.
Food
I was on a "soft" diet, which is soft veges etc, but I found that chewing at all was moving my eye too much. Changing hospital diets seems a bit like changing the address on your bank account -- you have to ask a few times before it sticks -- but I eventually got changed to a pureed diet. Unfortunately it wasaround the time my eye started getting better, and I wasn't able to change it back before checking out. Oh well.
Getting Better
By Sunday afternoon the slashing neon knives of pain had receded to a rouch scratchiness and occasional spikes. The opthalmologist wheelchaired me down to the eye clinic for another look with his BiMWABL, and said it was looking much better, and I might be getting home the next day.
Another BiMWABL inspection Monday, and I was released.
Home Now
So I'm home now, writing this (I started on Monday, but now it's Tuesday afternoon, because I can only look at the computer screen for short stints).
My right pupil is still gigantic, and it feels a little weird but doesn't hurt at all. I still need sunglasses everywhere and in bright sunlight I can't open my eyes at all, but I expect that to pass over the next couple of days. I'm using regular lubricating eye drops and I guess I'll use them nightly for the rest of my life, but that's a tiny price to pay for avoiding any recurrence of this pain.
So that's it, up til now. Told you it was long and boring :)
Attention, ECHELON
It occured to me that the CIA should look into corneal scraping as a torture. You need a BiMWABL to see it, so the pesky inspectors from the Red Cross or whoever will never know. Just a thought; my ECHELON readers might like to pass it on to their Egyptian friends.
This is a story about my experience of Recurrent Corneal Erosion Syndrome.. it's a bit long and overly detailed, partly coz it's for my mum (hi Mum!) and partly in case some other poor bugger gets RCES and stumbles across this page. I'll try and put in good headings in so you can skip the bits you don't wanna read.
What It Is
Recurrent Corneal Erosion Syndrome means that a flap of the clear skin on my cornea was torn at some point in the past. Cornea skin can stick back down fairly quickly, but might take 6 or 8 weeks to become fully reconnected. If you're unlucky, then for some reason the flap of skin can attach to your eyelid overnight, and when your eye twitches the flap tears back off again.
The Wikipedia article has more info.
How It Started
About three years ago I woke one night with a bit of pain in my right eye. I'd been routing some MDF earlier that week and I guessed that I'd rubbed a bit of dust into my eye.
The soreness went away after an hour or two, just like it did a month or two later when it happened again, and again the month after that. I'd wake in the early hours, sit up for a hour, then go back to sleep. Sometimes it would still be bugging me the next morning, and sometimes it'd happen a few nights in a row.
I went to a few different GPs at varoius times; a couple had a look at the underside of my eyelid but couldn't see anything, and others guessed that my glasses prescription was wrong, or that I needed antibacterial drops, or whatever. It always went away, so in theory, all treatments (including doing nothing) were equally successful.
Getting Worse
Then, about six months ago, I had a full two days of continuous pain, and resolved to more seriously pursue a solution. I went onto some antibacterial drops and the problem went away again. Same thing happened next time. Then about a month ago it flared up again and I got another prescription of drops and cream.
Unlike doctors before him, this GP now made a confident diagnosis: he told me I had a stye deep under my eyelid, and that was occasionally releasing a bunch of infected gunk. I was pretty happy to get a clear diagnoisis, and the permanent cure, according to that GP, was just to not rub that eye, and the stye would go away.
Brilliant, I thought. I got back on the antibacterial drops and nightly cream, and started to religiously avoid touching my eye. It's harder than you think, especially since the nighttime antibacterial cream sticks in your eyelashes and you can't rub it out in the shower the next morning.
Hurting Hurting Hurting
Four weeks later, and no real improvement. On Wednesday my regular morning scratchiness stuck around for longer that usual, so my daughter and I were late for our Wednesday morning preschool. At work that afternoon my eye hurt continuously, and just after making it home that day, the pain got so bad my eyes just cranked themselves shut.
I managed to force them open that night to jam in some drops and cream, but didn't get any sleep. The only thing stopping me from doing a midnight run to the hospital's emergency room was the current Australian government (whose policies don't include well-funded hospitals).. I expected that I'd be kept waiting around the whole night anyway.
The next morning my wife took me to the first GP we could get an appointment at, which happened to be across the road from the hospital. With pain jamming my eyes shut I was completely blind and M--- had to lead me around. The GP basically just called the hospital's eye clinic and booked us in there, then we borrowed a wheelchair and wheeled over. A hour or so later a nurse gave me a few drops of local anaesthetic and I could open my eyes again.
Another hour later and the opthalmology registrar was looking at my eye with a Big Machine With A Bright Light (BiMWABL, I'll call it), and I was diagnosed with "recurrent erosion syndrome". The registrar taped a pad against my eye, very firmly, gave me an appointment the next day, and sent me home.
Anyway, once the local anaesthetic wore off the terrible blades of pain started whirling in my eye again, but having an actual diagnosis (from an actual expert) was surprisingly buoying. The night went very slowly -- it hurt too much to lie my head back, so I dozed through much of the night sitting in a chair at my kitchen table, slumping forward onto my pillow on the table.
Into Hospital
The next day was Friday and again some local anaesthetic mercifully took away the pain for a few hours, long enough for the opthalmology consultant and registrar to confirm the diagnosis. The treatment for recurrent erosion is some eye drops, and spending several days not moving your eye or eyelid while having a pressure pad on it, so they booked me into a hospital bed.
We waited in the eye clinic about 6 hours. Once the local wore off, opening or moving my good eye moved the bad eye to make me yell with pain, so I was effectively blind the whole time. We moved up to some couches in a ward and waited another hour or two. M--- left to pick our children up from daycare and I was eventually led to a bed and settled in.
Around midnight (I guess) I was moved from that bed to another, which was great, as the first bed was in a room with several other people including one poor guy who I think was recovering from a heart bypass, who had dementia and spent most of the night calling out stuff like "Where am I? Can somebody help me? I feel awful sick.". The new bed was in a room on its own. I kept waiting to get booted in favour of a private patient but it never happened.
Visions and No Sleep
If you're paying any attention to what is around you, it's really hard not to flick your eyes in the direction of some new sound, even when your eyes are shut, so I had to really zone out from the environment to keep my eyes from twitching around.
The pain made it impossible to sleep. If I could keep my eyes still for a while, I could doze off, but the instant I started slipping into REM sleep my eyes would move and the slashing pain would wake me again.
The combination of zoning out, no sight, and no proper sleep led to some really weird visions. I spent long minutes looking at a tree trunk, or watching a big boat pass by. I guess I knew they were hallucinations the whole time. On Saturday M--- dropped in a music player my brother had loaded up for me, and I spent a lot of that evening watching crazy new music clips playing against my eyelids.
Food
I was on a "soft" diet, which is soft veges etc, but I found that chewing at all was moving my eye too much. Changing hospital diets seems a bit like changing the address on your bank account -- you have to ask a few times before it sticks -- but I eventually got changed to a pureed diet. Unfortunately it wasaround the time my eye started getting better, and I wasn't able to change it back before checking out. Oh well.
Getting Better
By Sunday afternoon the slashing neon knives of pain had receded to a rouch scratchiness and occasional spikes. The opthalmologist wheelchaired me down to the eye clinic for another look with his BiMWABL, and said it was looking much better, and I might be getting home the next day.
Another BiMWABL inspection Monday, and I was released.
Home Now
So I'm home now, writing this (I started on Monday, but now it's Tuesday afternoon, because I can only look at the computer screen for short stints).
My right pupil is still gigantic, and it feels a little weird but doesn't hurt at all. I still need sunglasses everywhere and in bright sunlight I can't open my eyes at all, but I expect that to pass over the next couple of days. I'm using regular lubricating eye drops and I guess I'll use them nightly for the rest of my life, but that's a tiny price to pay for avoiding any recurrence of this pain.
So that's it, up til now. Told you it was long and boring :)
Attention, ECHELON
It occured to me that the CIA should look into corneal scraping as a torture. You need a BiMWABL to see it, so the pesky inspectors from the Red Cross or whoever will never know. Just a thought; my ECHELON readers might like to pass it on to their Egyptian friends.
posted by Daniel at 7:53 PM
114 Comments:
Get Well Soon.......
Adam
P.S. - "Stop or you will go blind..."
Hi, I have had this problem for approx 26 years!!...
Sounds hard to believe, but when I first realised there was a problem it was way back in 1980 and I don't think any one knew too much about it... It appeared to be more of a dry eye problem…, and it only ever happened at night…
I would wake at 04:00am, and my eyes would just pour…, the pain was unbelievable.. At first the problem was with just one eye…, and then in approx 1994 it moved to the other as well…
I was eventually referred to Moorfields Eye Hospital, London in 1990 where I met a Doctor who told me I had a rare condition. The fluid between my eye and the cornea did not adhere the cornea to the eye correctly…, so the constant pulling of the cornea with the eyelid just meant that the cornea never stuck back correctly to the eye…, thus meaning the recurrence of the problem was highly likely…
The advice back then was to keep my eyelids clean and use anti-biotic creams etc…, none of which ever really worked, the same went for artificial tears etc..
The reason my problem has gone on so long is that I did not understand the length of time the injury needs to repair itself… The recommended time is approx 16 weeks, and in 26 years I had never had a break for longer than a couple of weeks… The degree of the problem was different too, sometimes it would be mild and sometimes really bad…
I also didn’t know that there have been a number of advances in the treatment of this problem since 1990…. I just got used to this happening and dealt with it…. I think I have also been given bad advice over the years as I went to see a specialist 3 years ago and he just reiterated the idea of keeping the eyelids clean etc…, not a word about new treatments etc… I actually suggested Punctal Plugs, so as to allow more tears to stay in my eyes in an effort to get me through the night, but he said that would not be of any use…
There now seems to be three ways to tackle the problem…
1. Laser surgery (PTK)
2. Contact lens – Silicone Hydrogel type, which you wear all the time for 16 weeks, so the eyelid cannot stick to the damaged area…
3. Anterior Stromal Puncture – Where they puncture areas of the eye with a needle to promote the bonding of the cornea and the eye…
It’s been a nightmare…, and it’s hard to convey how much of a mess this has made of my sleeping patterns and in deed, my life….
I’m seeing my Doctor again in the next few weeks and I hope he suggests the Contact lens option…., this could be the beginning of a new beginning….
I finally got diagnosed and, what a relief it is to finally know what's going on!!!
I lucked out by calling an eye surgeon and, without hesitation, he told me what it was. I did scratch my cornea about 16 years ago and found injury is a contributing factor to RCE.
I was very skeptical of anyone ever being able to diagnose me, as I have told several optometrists and doctors and they all told me something intelligent like, “Maybe you got something in your eye.” I have searched the web repeatedly, typing in all my symptoms, but never found RCE until the doctor gave me the disease name.
As far as the pain being unbearable - - I confirm. I've giving birth & suffer from migraines but an erosion episode is like nothing else I've experienced.
I am gooping up each night with ointments & lubing often with artificial tears.
I put on quite a screaming show for my husband last Saturday morning; hopefully it will never happen again.
I hope to the same for you. Cheers from Colorado, USA.
Hello Everyone. All of our stories sound exactly the same. I have had RCE for about 3 years. For the past 2 years I have worn a bandage contact lens at night and have not had an episode since then. My doctor put the contact in after a very bad episode and I asked him if I could wear it just at night. That is what I have been doing and it works. Until they come up with a permanent solution I will continue to wear the contact at night. I hope this helps even one person, there is not reason to suffer so much when the contact works very well. Take care. Linda
I have had RCE for the past 3 years. After a very bad episode my doctor put a contact lens in until my eye healed. Since this occurs during REM sleep I asked the doctor if I could continue to wear the contact, just at night. He said to try it and I have not had an episode the past 2 years. Until they come up with a permanent solution I will continue to wear it at night. There is no reason to suffer when such a simple solution is right at hand. Take care. Linda
oh my goodness have been suffering in agony for years with this. Having a baby was a walk in the park compared to the pain ive been in.The pain takes you to such a lonley place and noone seems to understand the acute agony it causes. Havnt had it for ages and my eyes have learned to open slowly when i wake. Caroline
Hi!
My name is Adam and I have RCE for almost 5 years now. The doctors tried everything here, from drops to operation, and I must say,it really ruins your life. I have a rare version of this problem, since i have it in both eyes and they are exactley on the same spot.It surfaced without any trauma, slowly developing in 5-6 weeks. This is an inherrited version of RCE, a genetic one, at this point there are no cure for it. At least where I live, which is Hungary, Europe.
So for me the contact lenses, that you wear at night might be the option, but none of the doctors here offered me this, so far.
Can you buy those in the pharmacy in the US? If you can, next time i visit my friend, i would just go and buy a few. If anyone knows this or has any solution that worked for him, please share!
Adam Szeleczky
Budapest, hungary
hi i know this sounds strange but i found soaking a flannel in warm water and then sleeping with it pressed on your eye helped a lot caroline
Oh my god, I can't believe how many people have already responded that they have been living with this condition for so long.
I'm 21, and I started having recurrent corneal erosions about 1 year ago, and it was really awful. Painful, recurring, frustrating, hard to heal... I'm sure you know how it's like. But last summer I had PTK on the right eye, and that definitely corrected the problem. I don't get it anymore. About a month ago I had PTK on the left eye to treat that too, and its healed. I've been corneal abrasion free for a while now, and I would definitely, definitely recommend it. The surgery for each eye is $2000 but many insurance policies will cover it (the nature of the condition is that its often caused by an injury, so that can be your argument). Find a corneal specialist or laser treatment center and definitely go for a consultation. The actual laser treatment takes only about 15 minutes and the discomfort is gone in 2 days, and heals relatively quickly after that. Seriously, don't live with something like this any longer than you have to.
RCE is actually quite common, its scary!
actually, see this for more info
http://hkmargie.blogspot.com/2007/04/good-eye-news.html
It is 4.30am here in England and I woke up at 3.30am with the pain. My eye is still watering and now rather swollen. I have had this condition for about 3 months now. It's so frustrating. Take Care Samantha.
oh crap, i just stumbled onto this site while trying to look up something to help with the condition... i have had it for about 4 months and thought that was a long time and i would be getting better any day now, seems not likely eh. I can sympathize with you folks.
Thanks to everyone who has posted. I have had this condition for many months now, with really severe, insane pain the last two months.
The most recent consult with the opthamologist was a damper, since he advised again there is really nothing that can be done, just wait it out and keep putting this really thick gunk on my eyes before bed to keep them from adhering to the lid. It's helped a few times, but I am still awoken almost nightly by the indescribable pain, as soon as I hit REM sleep. Then of course, my first reaction is to open them, and well, that's equivalent to someone shaving your eyes every night. Just try to sleep after that.
He said "this condition usually resolves itself." How long? "Well, it's different for everyone." (The doctor also mentioned that even though he has only seen a handful of cases like this over his entire career, he has had to hospitalize patients with this because the pain was unmanageable.) And as happy as I was to actually have a diagnosis, I had no idea I could suffer from this for years, as some of the previous posts have chronicled.
Thank you, thank you, for the suggestions mentioned. I am going to start seeking second opinions and find a physician that will consider some of the options mentioned. If a contact lens worn at night will do the trick, sign me up!
I'm a tough girl and can deal with just about anything, but much more of this and I'll be asking for hot poker...
--KC
Thank you, thank you, thank you for posting this blog. It has been so hard to find out any information about this, and obviously, this condition is a little more "Common" than the ophthamologists lead you to believe. i did happen to just stumble upon this site, trying to research treatment options, and have learned more from all of you than Web MD can tell me. I have been in such pain and agony, and while I truly sympathize with all of you, it is a bit comforting to know I am not alone. I just had the Bowman's procedure done (needle in the eye, YEA!!!!) but I still am having problems. I do alright for a few days, then BAM! I like the analogy of someone shaving your eye balls, so very true! I had absolutely no idea about the contact lens, so I will definitely be asking about that. I too have learned to NOT OPEN YOUR EYE FAST in the morning, but in my case, it just doesn't matter. And the goop, I put that in my eye everycnight, and wake up with goopy crud all over the place. Weeee,what fun this is! I do the moisturizing eye drops too. If you can stand it, I have found that the humidity created by wearing an eye patch does help. But, this is not always convenient, (I'm a transcriptionist and have to have both of my eyes to see, thank you very much!)
Thank you for listening to me, and thanks again for this blog.
Take care, all! MaryAnne
After suffering for years and after trying everything was forced down the homeopathic route which i have to say seemed like such a shot in the dark, and one i had no belief in. The lady i visited in covent garden told me that there was something in my life i was choosing not to see and that was causing the condition. you can imagined what i thought of that. She gave me some drops to put under my tongue and fifty pounds later went home feeling cheated. Almost immediately the symtoms went and i later did discover something was indeed happening that i just wouldnt see.... wierd eh what you think guys.
I feel so bad for you all. My husband has had RCE (and Corneal Epithelial Basement Membrane Dystrophy) since an incident in Nov 06 and it is just horrible. We are willing to go anywhere in the world to fix it, but there just isn't the information (or cure) out there?! We are in Perth, Australia and apparently have the best Ophthalmologist on the job? We are going in for a 2nd lasik surgery next week because the last one (only 3 months ago) has not worked. The stromal puncture prior also did not work. I really want the contact lenses, but we've asked already and they're not interested. I will have to make them listen next week, or they can tell me WHY he can't have them to wear at night! I have found the worst part is that no-one gets it. No-one seems to understand the magnitute of the problem (being the instant horrendous pain and the chance it will be there forever). Only those in that bedroom when it happens and you can't even find your way to your own medication to relieve your own pain know how bad it really is!!!! It's really horrible to not know if it will ever stop happening to him. (We are luckier than those of you that have to not only go through this, but also somehow pay for your treatment, as ours is Worker's Comp. It's a little relief to an otherwise gigantic burden.) Love and painfree times to you all, Lil!
I really do feel that more should be done to help us,its worse than any other pain i know and often feels like someone is stabbing me in the eye with a very sharp knife.Pain killers dont work so the pain must be really bad. What can we do?
Hi there ... I'm an RCE sufferer for 13 years ... been through it all like everyone else who has posted.
My thoughts on treatments ... have any of you had saline treatment following patching? Muro 123 drops and ointment? It does seem to help "stick" the cells down on the cornea. As well, my opthalmologist scrapes (yes its gross) the bad cells off and new ones grow that "stick" better.
As for the bandage contacts at night. I tried that for a while BUT it can be worse as the contacts can trap bacteria leading to an infection which would be WORSE because you could lose your sight.
Today its acting up but it's been calm for almost 3 yrs. I do the nightly goop and then again when I get up in the night and it has helped immensely. Theres not a lot else they can do ... eventually a cornea transplant can help but only when the eyesight is really compromised.
I'm sure pretty much everyone has an underlying cornea dystrophy which is why this happens. It does resolve itself fairly quickly luckily when it happens.
Anyway ... that's my 2 cents. BTW I've found that the pain is okay once I knew what it was. When my cornea gets scarped its NOT okay but by and large I can "put up" with it esp with large sunglasses! I HATE it when it's a sunny day and this is flaringup!
Cheers
I am so glad for this blog. As they say, misery loves company. Nothing is quite so isolating as eye pain. It's not like childbirth,broken bones,etc. where everyone commiserates. I feel no one really understands--until now. Anyway, I have been told I have limbic stem cell deficiency. I have been to many experts. They want to transplant healthy cells from good eye over spot that keeps eroding in bad eye. But, since surgery started this problem, I am quite reluctant to follow through.
So, I am going to try more of a preventative approach: eye rest daily, compresses, stay well hydrated. Any suggestions would be appreciated.
Wow, I didnt know there was so many of us RCE suffers. I've had the condition for about 13 years now in both eyes. It took several years before I was correctly diagnosed with RCE. I now use eye drops during the day and Lacrilube (expensive eye goop $20AUD for 2 tiny tubes) in large volumes at night. Even with this, I still endure a bad episode every couple of months in one or the other or on the rare occasion, both eyes. As all of you know, the pain is horrible for about an hour during the event and then the pain subsides as the eye quickly begins to recover. I usually try and sleep as much as I can to rest the eyes after a bad episode.
I find that my eyes become so swollen by the event that I have no point of focus for as much as 3 days in the effected eye. Do you guys get that??? I imagine you do.
What is the deal with PTK? Can someone please post a link to explain the procedure? I be very thankful. Also, how painful is the procedure? I'm wondering if this is the procedure my optimoligist was talking about last time I saw her. She said that there was a prcedure where the lining of the eye was removed and had to be left to grow back. She said it was a horribly painful procedure so now I'm worried about getting it done :(
Great to have found this page. Thank you to its author and to all of you who have contributed.
Regards
Gary T
Brisbane, Queensland, Australia.
i was just diagnosed with corneal erosion. It came out of nowhere. I am being treated with anitbiotic drops as well as steriod drops. I have been in pain for a week now but it seems to be getting a little better.
My husband developed RCE this summer. We kept thinking he had a dry eye..odd since we live in a very humid climate. He's thinking he's having the problem as a result of having diabetes..Is there anyone else out there who has an idea about this? Right now we are just in the beginning of realizing it may not go away for awhile and wondering how to manage this to help keep the discomfort to a minimum. Thanks for starting this site. We had never heard of this until now and I did not know that it was so...common?..
Hi I have had RCE for about 4 years. Only slightly irritated left eye at first, until the dye used by the opticians and the opthalmologist to detect RCE caused me to have an excruciating episode that lasted for 3 days. He explained the disease and told me to use Lacrilube. I have read up on RCE and now drink lots of water, eat almonds, keep water in the house in bowls to create a humid climate and use lacrilube religiously. I have not had an attack since following this regime and pray I never will as the pain is unbelievable and as a single parent have no one to help when it hits. I believe the dye used by the opticians to see the condition in my case brings on an episode. I can't believe how many have this condition and no studies are being done to recrify it.
Hi, it is strangely helpful to realise so many people are suffering with this awful condition. It is certainly making my life a misery and I cant see any end to the symptoms, I have a referral for hospital consultation so will have to wait and see how that goes. Laser treatment sounds scary but anything that is going to mean I can get peace will be good. I am finding so much of my life is affected by this as often symptoms dont disappear for days at a time - and the nights of excrutiating pain mean that bedtime is not a pleasant time as I just know the pain will come during the night. I too use lacrilube - am never sure quite how much I should use - and often seems quite wasteful as it comes out as quickly as it goes in. I use viscotears through the day - usually 6 or 7 times. I am keen to try the almonds and keeping humidity up. I find swimming and showering help - again for the humidity reason I guess! Alcohol is a real problem and have pretty much excluded it now - not that I was a big drinker but it seems to make things worse.Thanks for all comments, I will keep looking at this site - and will update any further progress I make!
Hi Folks
Yep i am a member of your gang! i have suffered from this condition for 15 years! it is hell.
I had gone without an attack for 6 months then last week 1.30am BANG i shot up out of bed waking my husband, i was about 15 mins before i could unclench my eye and it was a bad one. i do fear going to sleep at night when this happens but now i am back on "lacrilube" and in a couple of weeks i will forget to put it in and a will be on borrowed time to my next attack then i will be really mad with myself for not continuing with the lacrilube... anyone relate to this??
I get the condition in both eyes but touch wood never both at the same time,hell if that happened i should want to be put down!!!!
My sisters both suffer from this by the way.
look after yourselfs fellow sufferers.
Andrea
Hi all,
I injured my eye back in April with a cereal box, (yes I know!) and took a chunk out of my cornea. Well I have never ever felt pain like that before, I have had 2 babies, and would rather give birth than have my cornea stuck to my eyelid.
It healed quite quickly after the initial injury, but since then I have been suffering recurrent episodes, sometimes it can be weeks in between, sometimes days. I have been to the hopsital and have been told I will need the drops for life. I am considering further treatment now, I have been offered a contact lens so I make take up that offer, but apparently that has complications connected to it too, (risk of infection etc).
Anyway I'm so glad I found this website, it is such a lonely condition, you feel like the only one in the world when you wake up at 3am with a pain like your eye has been attacked with a needle.
Katy
UK
Hi, This is for Gary in Australia. I have been dealing with severe corneal erosions in both eyes for over a year now. I have tried the eye patch, frequent debridements of the epithelial layer(very painful), and eye drops and ointments. The specialists I was going to recommended the PTK surgery. This involves scraping the loose cells off the eye and then doing the laser surgery. He then placed a bandage contact on my eye. The first 2-3 days are painful, but I was given numbing drops to use for 24 hrs and then Vicodin or Percocet as needed. I had my right eye done in June and my left eye done in August. So far I have been doing good. It is definitely better than the daily painful erosions I was having before. I don't know what the longterm outcome will be, but I don't regret having the surgery. Karen, USA
Hi Karen, my State side friend.
Thank you so much for letting me know. I'd love to hear how you go after a while. If the PTK does the job, I'm in boots and all. 13 years of this is more than enough punishment. I'm ready to move on :)
I can be reached at gkt1965 at hotmail dot com should anyone need to contact me.
cheers.
Again, thank goodness for this web site.
Thank you so much for this site! I go back to the doctor tmw and feel a little more confident with all of your info and experience. I have been suffering from RCE for 15 yrs but was "channeled" down the Cluster Migraine diagnosis (for which NO treatment helped...gee, wonder why?!?). I just got the RCE diagnosis about 3 weeks ago. I have it in both eyes and suffer EVERY night! I have a number of triggers and I am hoping some of you may respond with some supportive therapies to help out. Sunshine and winter snow glare are AWFUL! Do you wear any special glasses? Warm temps and dryness in the bedroom at night-HUGE-to the point that we run the AC at 65-degrees and my husband has to sleep on the couch because it is so cold! Hair, baby, anything touching the eye. Type 1 diabetes my doc has said had no relationship. Anyone elses opinion?? My husband just read all of the postings and he said out of all of them the only 2 not still suffering to such extremems that we do are the 2 who had the surgery ( and the one who wears the contacts but my doctor wont do that). Why such hesitance on the behalf of doctors to do it? Especially since I am feeling SO defeated by this and it is debilitating my life! Any thoughts?? Again thank you for this site and it is so comforting to know others are out there. hang in there and I pray it is a free night of pain for all!! Kris
I have had RCE for about 2 years now. I have had SK (scraping), followed by PTK, followed by SK, followed by another SK, followed by ASP (anterior stromal puncture). All these procedures within 18 months on my left eye. My right eye is starting to have episodes now and is pending an ASP with my Cornea Specialist. I had trouble again with my left eye the last couple of nights too. I have an identical twin who also has RCE...pretty much confirms the Genetic probability for us. She has had two SK's and an ASP in both eyes. THis is the most awful pain I have ever experienced.
I have had RCE for about 3 years now - a bit of twig went in my eye when strimming the garden. That will teach me to use goggles.
I really suffered in the beginning but am learning to deal with it now. Lacrilube at night along with Tesco's own saline eye wash. When I wake in the morning plenty of the saline before I open my eyes slowly. Whats the best solution for a long term cure - is there one?
noons seems to have picked up on the homeopathic route,i havnt had it since and was getting pain every night for many years. i have been pain free since visiting a homeopath in neals yard covent garden in london. sounds too simple eh but whatever drops she gave me to pop under my tongue cured me and i have been pain free ever since Caroline
Wow - I am so amazed that this problem is so prevalent! I have a very different history but still the same problem. I had PTK on both eyes over a year ago to correct a slight vision problem. Within 4 months I started having extreme pain in my left eye. I was told it was dry eye and directed to use drops and Muro ointment at night. It helped - some - the frequency was less. But then after 7 months I was having them more and worse. Just waking in the middle of the night, stressing that it was "going to happen again" - I actually felt like I was having anxiety attacks - but that was nothing compared to the extreme pain I felt when an episode occurred. Well, in February I had an episode that lasted throughout the morning and went to a cornea specialist. He said that I was his strangest case because what was the cure to most people who have this was what caused the problem in mine. He recommended another PTK on my left eye, which I did. I had a contact bandage and the very night after it was taken off - it happened again! It has since continued to happen in both eyes - normally only one eye or the other but when it has happened to both - the pain is so extreme - it just makes me so angry! The cornea specialist has recommended either another PTK, the needles in the eye trick (No Way!), or plugs (but I can't see how that would help when he has said it is not dry eye!). I want to find an eye doctor that actually knows what to do! I have tried a humidifier in my bedroom, warm, moist clothes on at night, and even a gel mask that went directly on my eyelids which worked for a while but now it is happening even when I wear the gel mask all night. I think I am going to ask for contacts at night and see if that helps - it definitely can not hurt as much as what I have been going through! I don't want to have any more surgery because I am afraid it is going to do something to my eyesight permanently. I'm so sorry for those of you who have suffered with this for years - I pray that some doctor somewhere will find a cure for this! Thanks for creating this site - no one understands like those that have gone through it! God bless!
Dear All !
I am Adam, I had a post here, few months ago. I have some new info, you might find helpful.
I have RCE for 5 years now. Started on the left eye, no trauma, then appeared on the right as well.
So, the new things/info from my doctor (who really puts effort to find the cure for me) are:
-Scraping has a success ratio of 5%. I already had it once, of course, nothing happened. If you can, skip it.
- PTK has 75%, but still it is more effective, if you're injury was caused by trauma. If you developed it genetically, it can be harder to find a cure (if there's one to be found at all...)
-my doctor advised me to try the homeopathic approach, so I will do that next week, with a specialist I will keep you guys informed about the result.
- contact lenses are only good if the damage on the cornea is relatively small. But...if you keep that in for a long time and you develop an infection under it, you may have a serious problem. That's why some doctors hesitate to tell you this option.
-An air conditioned room/house is a very-very bad environment for RCE, it will most definitely develop at night if you use it.
I had the worst period of my life when I had the AC on, it almost came out every 10th hour. Try to avoid that.
- Humid places are good, but again only for small problems, it will not help for anyone, who has it in both eyes and developed it genetically.
Finally…I am planning to set up a site for us sufferers, since to share our pain with each other is one way to ease it as well.
I have been suffering with this condition and definitely understand the magnitude it has on our everyday lives. If you need some comfort or just need to write it out or have no one to write to, about the pain you can always drop me a mail.
We have to believe, that for some of us the PTK will help, for others some homeopathic treatment might be the option.
Or someday, someone will come up with the cure.
Sadly for me, it seem that most of the doctors are just not familiar with this condition and on top of that, they are not really understanding nor empathic when it comes down to the pain it causes each night.
I am scared when going to sleep, but knowing that some of you can manage to at least live with this, and can share experiences with me is a huge, huge help.
Thanks for everyone,
Adam Szeleczky
Szeleczky@chello.hu
thanks ADAM and bear in mind everyone that the only posative outcome where the pain has completly stopped is with the homopathic route. Try it xx
Can anyone who has tried the homeopathic route please tell me what exactly they have given you that has worked? Thanks!
Thats the problem cause i just had a two hour consultation where we discussed foods that i ate and life style and stress levels and just about everything you can imagine relating to me and the homeopath gave me these tiny white pills to dissolve under my tongue, the pain stopped that night and that was ten years ago. sorry to be so vague but the homeopath was in London Covent Garden in a health shop called Neals Yard
Thanks for the info posted here- I've had RCE for about 6 months - I was out cycling without glasses and a fly damaged my cornea.
I'm going to push for the laser treatment - but while I wait - has anyone found glasses or goggles that protect the eye completely from wind / air flow - whilst not looking too out of place - I need to get back on my bike!
Jim
I am suprised to see that so many others are having this problem. I felt as though I was the only one, at least in my town. No one has ever even heard of RCE. I have been experiencing it for 2 1/2 years, which seems like an eternity and then I read where people have had it for 15 years!?!?! Kill me now!. I wear bandage contacts every night along with Liqui-gel. I have tried Muro 128 drops and ointment, Minocin, anterior stromal puncture (4 times), lacrilube, humidifier, and debridement. The only option we have not tried is the PTK and that is because I had PRK for vision correction and it started immediately after the PRK. I am at my wits end with this. It is a life altering condition and it has been very expensive buying all the drops, medciations, contacts, and copays. I have seen two corneal specialists and they haven't had any better suggestions than my ophthalmologist. I know they are all doing everything they know to do, but it is still very frustrating. My doctor says she will call me if anything groudbreaking comes along. If an of you find anything that works, please post it.
Betsy, South Carolina
It feels great to be able to share the experience with other. I had corrective laser treatment on both eyes in Sept 1997. In Sept 1998 I experienced my first corneal erosion. I woke up one morning and just couldn't open my eyes. The top layer had become totally unstuck. It was like an open wound and if I tried to open my eyes it would be like turning on a tap of water. I've only been that bad again once where the top layer had become totally unstuck. When my husband took me to the eye specialist and after applying the anesthetic my husband could actually see the top layer just hanging. When I had laser treatment to correct my eye sight they used PTK so there was no point in redoing the PTK to help me with RCE. I've had Anterior Stromal Puncture twice. At least the top layer stays in tact and doesn't fall off. Ten years on and I continue to suffer with RCE anywhere between twice to four times a year. I can handle the six months break but once I had it three times in five months and that was just too much to bear. I had an episode last week and another about a month ago. I think it happens when I stressed. The last month I've been dealing with my terminally ill father. I'm not sure if last week's episode was the usual RCE or conjunctivitis. I had some discharge from my eyes. I just cleaned my eyes with salt water. I'm hoping for a long break between episodes. A month ago it took about 6 days for the redness and swelling to go down. Last week it was shorter but the first day I just couldn't open my eyes. I use a computer for work and my eyes get pretty tired and vision is quite blurry. I put ointment in my eyes every night. I've only read about 5-6 comments but I've added site to my favourites. I'm looking forwarding to reading other peoples experience and what they do to help with the pain.
Good luck to all
From Gabriella - Sydney Australia
to Betsy, South Carolina and anybody that has had laser corrective eye surgery in particular PTK.
I read your comment after I posted my comment. I noticed you started to have the problem after you had the corrective laser surgery. It was after I had corrective laser treatment that I started to have episodes of RCE. I'd love to know how many more suffers may have contracted the problem from corrective laser treatment. Maybe we should warn people. I'd love to receive any emails from people. Maybe we should put a warning out to others considering corrective laser treatment although I think the drs making the money wouldn't be impressed. In hindsight, if I knew that I had to put ointment in my eyes every night for the rest of my life and also put up with so much pain when RCE occurs, I would gladly have continued to wear contacts and glasses.
Gabriella
angab@unwired.com.au
Hello everyone. I posted a comment here back in 2006. I still have not had an episode of RCE. I tried every cream on the market, choose not to have surgery, then tried to wear a contact at night. My doctor wasn't sure whether that would work but it does. I am very careful with cleaning my hands before putting the contact in and when taking it out. I have worn a contact at night for 3 years now and haven't had any problems. I found a doctor willing to order me the bandage lens, meaning there is no power in the lens. Yes there is a chance of infection but only if you are careless with keeping everything very clean. This is a small price to pay for avoiding that horrible pain. Until the doctors come up with a solution for this problem I will continue to wear the contact at night, it gave me back my life.
Blessings to all. Linda
I have been diagnosed with this problem too. I had a scratch on my eye by a tennis ball when i was younger. Boy it can be painful to say the least. QUESTION I HAVE FOR EVERYBODY???
Do you use a computer regularly?
Are you addicted to gaming on the internet? Because i have not been using my laptop as much over the passed two months and my eye problems aren't as bad. Can you let me know....?? email me...cbi@telus.net
all the best.
mike in vancouver, bc
dont use computer much so no link there but have noticed a massive sensitivity to lights when driving at night and it feels like people are driving on full beam when actually they are not
OK, I've decided to try a homeopath after contacting the Neal's Yard Remedies shop in Convent Garden in London to no avail that they would not just send something to me without a personal consultation. Like I am going to jump on a plane from Arizona, USA and fly to London for a consultation!! Anyway, for those of you that have had the privilege of getting diagnosed through the homeopath in London - the little pills or drops that you put under your tongue - did you only do this a few times? or is this something that you are doing for the rest of your life? I want an idea of what to tell this homeopath that I am looking for. My episodes have subsided to mild at most but they have been occurring more often, say 3-4 times a week! I am now back to waking in the morning hours with panic attacks - afraid to even move or attempt to open my eyes! I hate this - someone please find a cure!!
so glad to have found this site.. I was just diagnosed this week after a horrid episode that left me blind for two days. I won't go through that again. Fortunately, my doc reluctantly gave me the contact after some begging. I"m going to try it tonight. Here's hoping I don't wake up every hour like I have been for the last several weeks. I would LOVE to go the homeopathic route... if anyone finds out what to use, PLEASE POST!!!
I have just been diagnosed with RCE after suffering for several months. I must admit my pain is not as severe as some have posted. I do have the problem with both eyes and they tend to heal very quickly after starting the antibiotic ointment the dr prescribed. I have been using Refresh PM with little results and was able to find Muro 128 that my doctor prefers. Hopefully it will be my answer as I would like to avoid any type of surgical procedure. I will continue to check this site looking for advise. Will also start with daily eye drops along with the night time ointment. Anyone have luck with attempting to get eye drops in your eyes before opening them...letting it seep in from the inner corner? I read it on a website and wondered if it would help. It said to add drops to the inside corner of your eyes BEFORE you open them in the morning. Anything is worth a try.
I suggest going to a reputable homeopath and explaining your symptoms and seeing what they come up with. Must be worth a shot
Do homeopaths come in reputable?
Does anyone else feel, like a little, suspicious about the suggestion to see a homeopath. Not to mention that the person's post first mentions drops under her tongue then white pills.
Medicine can't cure everything its a very imperfect science but that doesn't mean that the cure must then be non-medical in origin or even that a cure is out there to be found. It sickens me to think that someone might trawl the internet looking for desperate people with incurable and very painful conditions to drum up business.
Please forgive me for calling you all desperate but thats what happens when you are faced with a problem like RCE.
Hope you are all travelling well learning from each other's genuine experiences with RCE and the various treatments you have tried.
On another note the author used patching for several days has anyone else done this?
Am very shocked to read the last message as the insinuation that the suggestion of a homeopath was to drum up buisness. I am a genuine sufferer of this awful condition and was just sharing my experience to try to help at least one person with this painfull condition.Am very sorry that the person that sent the last message thought that my messages were a hoax am just hoping that not every one is as untrusting and negative Happy new year
read these pages and just want to cry. had a seizure last august and did the stick my finger in my eye trick for good measure, was great to get a few days off work...then the recurrent bit came along in december, followed 3 weeks later by another episode and only getting my full sight back yesterday... i want to cry cos my doc told me that it should heal properly within a year and all will be dandy...that doesn't sound like the case tho... big hugs and all to everyone who suffers from this, cos its pants. not got anything positive to say, but a hug can be good, and i'm new to it, so forgive me!!xxxxx
Hi ! It's Adam again.
I tried the homeopath, but so far nothing really happened. I will give it another shot, but sadly no improvement so far for me.
I think this condition is terrible, and I just want to think, that people here are willing to help, not to drum up.
Of course, there is always a chance, that this is true.
I tried pathing, drops, surgery,you name it. I start to think, that it is time for me to find a good shrink. It is just more and more difficult to live with this. I just had a baby boy, and of course scared like hell, that the baby will get this later in life. So...I am fed up a bit now...
Greetings everyone, brilliant to find this place.
Just got back from hospital last night after being diagnosed with RCE. I was just wondering, as I've had this pain for 3 years and am under the care of a neurologist, if anyone could describe whereabouts the pain actually is? It's more excruciating than a migraine as it's centred solely on the eye, but in my case it seems to be directly behind the left eye. Does this sound about right?
I had no knowlege of this syndrome until 12 hours ago and am now thinking that if the pain is indeed from RECE, I don't need my neurologist anymore as it would explain the "headaches". I did tell him when first referred that the pains were always behind my left eye. When they appear upon waking, they render me useless, couldn't stand up yesterday til 4 o'clock the pain was so bad.
If anyone has a sec to spare could they be kind enough to let me know the area of the eye that the pain originates from?
All these posts are very comforting and I'm sorry you've all had such terrible pain.
Best wishes,
Fiona.
ps I should add, the recurrence of pain has vastly improved after starting to wear daily disposable contacts approx 8 months ago, but as I can't wear them at night, I expect that's why I wake up with the terrible pain sometimes. Night-time contact use info very interesting , thankyou, will ask doctor about it.
Fiona, as I understand it, pain from corneal damage isn't properly "locateable", meaning that the pain can seem to come from various places in your eye, even though it's caused by damage over your iris.
So it seems likely that your feeling of pain behind your eye is from your RCES. Sack your neurologist and get an opthalmologist :)
Good luck all
Deuce
Hi everyone, I first left a note on this site back in Sept 2007. In October I had laser treatment to correct RCE in right eye. It's costly as not available on NHS but I was desperate. I had a bandage contact lens left in for few days after surgery to allow healing without risk of sticking again.was given steroid drops, antibiotic drops and drops for dry eyes. Had check up and lens removed after 4 days - all was looking great. Then after a few days the pain at night returned - cornea had stuck to lid once more - consultant wondered whether lens could have been left in longer - but he removed as it was uncomfortable - but I wish I'd kept it in a few days more. Since the laser treatment I have had 4 episodes - I have Celluvisc drops for daytime and Lacrilube every night - I have difficulty still to open my eyes on waking and do so as slowly as I can.I may have to consider having the treatment repeated if eye deteriorates but at the moment life is so much better than before the laser surgery.My consultant has told me it is a genetic condition - where the layers of the cornea flake because the little 'plugs' that give adhesion are missing.You could go through life without knowing about this - except if you have some trauma to the eyes.I am also on a course of 3 months antibiotics which are advocated to improve the general health of my eyes and so aid recovery longer term.I too think the problem is worsened when I feel stressed or anxious. I also have a pre-disposition to diabetes, having had gestational diabetes with all my 3 pregnancies.I have been advised that if laser surgery was repeated they would 'go a bit deeper' into corneal layers to encourage better fusing of the layers - have to be careful though due to effects on eyesight.I am happy to soldier on - nightly generous dose of Lacrilube seems a small price to pay - even for the rest of my life ( I am 53 by the way)Lacrilube is nighttime solution as drops can't stay the distance. I even think it worth setting alarm and reapplying at night if occurence is really bad. I hope this is of some help to others, good luck to you all, Margy
Hi again all. I've had a good run for the last 6 months. I've only had 3 minor episodes. I've been trying to keep my fluids up during the day, use eye drops during the day when I notice my eyes are getting gritty and using Lacrilube every night (just as I had for the last 10 years of this).
The day time treatments seem to be helping. Keep your clear fluids up!
Good luck all.
Gary, Brisbane Aust.
Just wanted to say hi - I had this starting in 2004. Experienced the agony that everyone speaks of, and was willing to give up the eye if the pain would only stop. 3 years later it has quite settled down, but I'm always on guard. Self-help measures that I learned from a board online (healthboards - I don't know if its still up) include learning to wake with my eyes closed, and *still*, and keeping a bottle of lubricating drops close by, so that when I wake, if my eyes feel stuck closed, I reach for the bottle, and insert the tip of the bottle into the corner of my eye and the drops help loosen the eyelid from the eyeball. I always put Muro 128 before bed, and sleep with an eyemask to help my eyes stay closed. There is some research that shows Doxycycline to be helpful in this condition and I take it. I have not had an erosion in about a year. I also take Flax Seed oil (3 capsules). My empathy to everyone dealing with this as I know how absolutely agonizing it is. Never experienced anything more painful.
My eye was damaged in February 07 after walking into a golden cane palm! The palm frond poked a whole in my cornea. I was sent home from the eye hospital with the line "it will get better by itself in a little while". A month or so later i returned to the same specialist hospital after many nights of excruciating pain and was told that i probably just had conjunctivitis. They clearly had no idea. No mention was made of Recurrent corneal erosion, so thank you so much for this enlightening sight. Last December i got a referral from the GP for an opthalmic surgeon who put me on dioxycycline for a fortnight. I had never heard of this before for RCES, but, as you know, you'll try anything in desperation. Well....i have not had an episode since just before Christmas and that is a record for me, usually having them every week or two prior to the dioxycycline. It may be lucky timing, but it seems like it may have worked, although i am still meticulous with applying the drops every night before bed. I am cautiously hopeful though that it may just have worked. Will post another note in a little while with an update. For anyone considering this path though, whatever you do, make sure you drink plenty of water if you take this antibiotic, and don't take it just before bed. I made this mistake and the antibiotic lodged in my oesophagus and caused horrid lesions as it ate my oesophagus wall away; the pain was (almost) as bad as the RCE, just different, and i wasn't able to eat for 10 days and even a mouthful of water going down was unbearable. Still, if it has worked on the eye, i consider it was worth the agony! Good luck to all. Jeanette, Brisbane, Australia
I’ve never posted a comment on a blog before! But, you are all so lovely; I thought I would join the group. I was diagnosed with RCE today, my first episode since a snowball scratched my cornea over 15years ago! (Mind you, I was an innocent in the snowball fight, just watching the carnage. That's what I get for enjoying the spectacle)!
I think my case is mild, just feels like I have something in my eye, like pebbles or a huge piece of debris! I'm grateful for all the information! Hopefully your tips will help prevent my case from getting worse! I’m on the ointment and rewetting drops for a month! Hope this will be the end of it…as someone else said, not likely right?
Many thanks to all! Look forward to any new ideas. I’m particularly interested in the homeopathic route. Wow!!! Is there something I’m not seeing (for the woman, who is pain free and saw a homeopath, who suggest she was “blind” to something in her life).
Hi, first-time visitor, long-time sufferer...
While I haven't been diagnosed, I've had the described symptoms for 10-15 years.
It occurs every 2-3 months, always at night or in the morning when I wake up and open my eyes. There's a sensation like sand being between my eye and the eyelid, or like someone ran a razor across my cornea.
The sensation, while probably not as bad as some make it out to be, is still excruciating and leaves me pouring tears and unable to open my eyes for 15-30 minutes. Rolling the eyes or looking in a particular direction and blinking, or with the eye closed intensifies the pain, feeling very much like a single, large grain of sand or filament dragging across a specific part of the eye's surface
Looking in a mirror, there's no visible damage to the eye. After about 30-60 minutes, I'm able to go to sleep again if it's the middle of the night. When I wake up in the morning, if it's several hours or more, the pain is mostly gone. If it occurred when I wake up in the morning, the pain can persist for much of the day, although I can function again after 30-60 minutes. The longest stretch of residual ache has been three days of gradual fading. During that episode, I had double vision in that eye for two days, but normally there is no change in vision.
I've seen a doctor about the specific issue once and it was dismissed as nothing. I've mentioned it to my current optometrist, but RCE was not mentioned as a cause.
This morning, I experienced it for the first time in a few months. I had received a phone call at 8am and woke up quickly to answer it, opening my eyes with a start. While the initial pain was not the worst I've experienced, I was tearing for most of the morning and the sensation of a raw cornea or debris under the eyelid has persisted all day. I expect it will be gone by tomorrow morning or the day after, as it usually does.
Now that I know RCE may be the cause, I will try to remember to ask my optometrist at my next appointment. Hope my experience helps someone else recognize their symptoms and zero in on a cause, too.
Hi guys.
I too have Recurrent Erosion. I first developed the problem, without any sort of eye trauma the first weekend in October 2007. I had episodes usually every 5 - 10 days, although I did manage a period of 14 days without an episode. The episode always occurred in the morning, always waking me from sleep. (I've never had a waking episode). Several trips to the emergency department at my local hospital brought temporary relief with freezing eye drops, and was diagnosed with an ucler and/or a scratched cornea. Eventually I was referred to an opthamologist, who diagnosed me with Recurrent Erosion. Muro 128 cream was suggested, and I began applying it to my eye 3 - 5 times/day, including upon waking and at bedtime. This did seem to help when an episode occurred, but did not decrease the frequency of my episodes. I can concur that the pain of an episode is just intense. Often using my good left eye was not an option, as it put stress on my horrible right eye, and the right eye tending to want to do the same thing as my right eye was doing. Gently rubbing my eye through the eye lid in a circular motion seemed to help, and usually the episode was over within 2 hours, and more sleep would allow the eye to begin to heal. (I never did have a 2nd episode after returning to sleep). Usually by mid-day, things were normal.
I had a severe episode in early January of this year, where my eye was inflamed for 48 hours, at which point my opthamologist referred me for PTK surgery.
I had this surgery this past week, and I am now 6 days since the surgery. I've had several drops to use since then, including a steriod, antibiotics (due to the surgical contact lense I had inplanted at surgery), articifical tears, and a artifical tear gel to use each night at bedtime. So far, no episodes, and my eye feels great! Of course, it may just be too soon to tell.
One thing the operating Dr. told me - he said it was 'just the way my eye was built'. I have just recently discovered that my Dad suffered from this when he was in his 20's (almost 40 years ago!). This would seem to imply, at least in my case, that the problem is genetic.
Hopefully, this can help some of you.
Hurrah, hurrah, hurrah - finally I've found out what's wrong with me! After 3 years of suffering and treatment for allergies, ulcers, herpes and dry eyes someone has finally given me a diagnosis which makes sense. And, the best bit of all (she says all too gleefully) my wonderful consultant said "I know exactly what's wrong with you - because I suffer with the same thing!" Take heart my fellow RCE friends, this guy operates on eyes for a living, if he can cope with RCE - so can we. (Mind you, there's no way I'll allow him to operate on me!)
Keep on lubing
Vicky
Hello all,
Thank you for posting the blog. I have had RCE for 2 years now and was only diagnosed 1 week ago. your story sounds so like mine.
I won't bore you with the history but It started in my left eye with a scratch but now both eyes suffer. And yes the pain is unbearable!
All the best
Richard, Cambrigshire UK
It is so unforunate that we have to go through so much pain in 2008 and there is no cure!
My story is a little different but same results. I went to the hairdressers and she got hair dye into my eye, since then I have have recurrent erosion, which is soooo painful and unbareable, it has turned my life upside down and most of the days I feel I just can't cope with it anymore. Especially when the only thing the doctors can tell me is we don't know when it will stop.
My pain starts with the eye, then the side of the head and continues to the back of the head. It feels like a fire ball in your head and at the same time your eye hurts.
I have read some of the comments but none say they suffer from the headaches, does anyone else get the same systoms as me?
I have an appointment with an eye specialist next week who says he can fix the rca problem with a saline solution he brings into Australia from the USA. Has anybody tried this? I am a little concerned about it as he says it dries out the cornea, forcing it to repair itself. The other option is the scraping, which, by all accounts, does not have a high success rate. I am getting desperate to give anything a try, but, still wary about something that might cause even more damage. Has anyone heard of this? nette, QLD
Hello everyone,
I just received the wonderful news this past week that I too have RCES. My doctor scraped my right cornea, installed a contact lens, gave me a prescription for antibiotics and eye drops and said go home and Google. I did.
My history is little different from the rest of you. I am 61 years old. I have had Type II Diabetes for 21 years, which I have kept under good control. About 6 years ago I had cataract surgery in both eyes (in which they implanted intraocular lenses and corrected my near sightedness). My RCES experience seems to have come on gradually. A little pain and not being able to focus at first. Then more and more symptoms until this past week when I could no longer open my right eye at all. Thank goodness my doctor is forward thinking. He says that after my eye has healed then we will discuss my treatment options.
And yes, to the question about diabetes, he says that it is one more wonderful side effect of the diease and patients with RCES MUST be extremely careful to not get eye infections as with this condition the protective layer (that helps you from getting an infection) is gone until it heals. That means no swimming pools, no hot tubs, no saunas.
So, right now other than my vision still being a little hazy I am pain free. And I will graciously accept that for now.
I hope that some of my comments help a few of you. I know I appreciated everything I read.
Ellen in the beautiful State of North Carolina
I am so glas that finally such a blog has been posted. I am a 21 year old who has suffered from this condition for about 8 years. Same symptoms as everyone else, caused by trauma. I knew it was painfull, but until my last episode, where I was prescribed vicodin, and it did nothing, I had no idea that it was that bad (which is a good thing because now I know I will survive childbirth). Anyway, I will hopefully be having the PTK surgery next week (I am now legally blind because the scar that formed obstructs my vision fiel), I will post again next week. The only reccommendation I can give to all is to AL