Corneal Erosion

[Joelle1981]

Hi, my name is Joelle and I've never posted anything on the internet so I hope I do okay. I was diagnosed with rce in October 2005. I have been desperate for some kind of information on this syndrome considering both eye doctors I've seen know less than you guys (especially Mike!) I am so happy to have other people to talk to about this because it's hard for anyone to understand what I have been going through. At this point I was highly considering seeing a corneal specialist and begging for surgery but so far it seems from this site that surgery is a last resort. I was told by my Dr. to use muro ointment and drops which I have been doing since. Drops 4x a day and ointment at night. I was never told to warm the ointment but I am definitely starting that today! I am also going to try to keep my eyes closed when I wake up which will be hard because when I have an erosion I shoot up out of bed and rip open my eyes. This is long so I will go for now. I look forward to any advice or comments.
Thanks, Joelle

[JaneNY]

Joelle, if you have any type of approximate 'schedule' that your erosions happen (like after a certain amount of hours of sleep), you can try to stay ahead of it by setting a *very* quiet alarm(ie. one that doesn't startle you awake!), to wake up and put more ointment before an erosion occurs. I did this for several months, then realized I was sleeping through the alarm and now sleep through the night. You also want to keep your night drops handy so you can always get them with your eyes closed. I keep them in a tissue box right in front of my alarm.

Really work on that thing of waking with your eyes closed - you really can do it. Its a shame there aren't too many doctors who even know these management techniques that work. You CAN beat this - I'm erosion free since mid August, after having them every week or two and even every night or two in my worst times. Follow the stuff Mike says - it really works.

[mike1961]

Joelle1981 - a few things. First, yes we all sympathize with you and know the pain. I'm erosion free for about 19 months now. First, please keep in mind that for some, Muro drops actually make the erosions worse and more likely while doing the opposite for others so pay attention to your body and listen to what works and what does not.

Regarding the warming the ointment - it's great. Consider warming it either under warm water or if you don't want to get out of bed, put the tube under your armpit for 1-2 minutes and then use a booklight to apply it.

Many post how it's hard to keep their eyes closed when they have an erosion because they immediately do all kinds of things. The main thing to keep in mind is that 9 times out of 10 people are so used to just popping their eyes open as they awaken and they have not trained themselves to keep their eyes still and learn to awaken with their eyes closed. It's impossible to get an erosion upon awakening without moving your eyelids. So, just keep them still until you apply the drops. Also, if you do get an erosion, try not to panic and keep your eyes closed, still, relaxed and blink as little as possible and apply the drops. Keep them closed while applying drops as often as necessary so as to minimize the erosion otherwise blinking will make the erosion far worse. Stay this way for 15 minutes after the erosion and apply drops with your eyes closed as necessary to ward off the pain. About 30 minutes later after you are starting the day consider applying warm muro ointment to help with any eye irritation during the day. My doctor says I can use muro ointment and artificial tears as often as I want and as much as I want.

You can learn and train your body to awaken without moving your eyelids - it may help to make an affirmation every night to yourself before going to sleep at night that you will. Some use an eye mask. For me, I find that I just make sure that my eyes are completely closed as much as possible before I go to sleep (sometimes I gently squeeze them closed a few times, but not too hard). Also, don't sleep on your back.

If you get really frustrated with it all - the next course of action that many prefer is the antibiotic doxycycline which is well tolerated by the body. Usually a 2 month supply of about 100 mg is what I have read that works well. You can always combine that with artificial tears. There are many ways to treat this medically and surgically. The main thing to remember is that many sleep with their eyes slightly open which causes the eyes to dry out. Therefore, when one awakens and their eyelid rubs across their dry eye, it just rips the cells right off. But, if you can get the artificial tears in first and wait 15 seconds or so, your eyes should feel as smooth as silk. Be sure to apply lots of artificial tears - you cannot apply too much and be sure you insert the tip so that it gently touches the corner of your eye so the tears go directly in your eye.

Keep at it - I know it takes time and is frustrating.
Best to you,
Mike

[pal01]

Hello,

I have been having problems with my eyes for quite some time. About 3 months ago, I started waking up and having a shooting pain in one or the other of my eyes and felt something tearing. I then would be blind in that eye for almost an entire day. I was terrified of what might be wrong and foolishly put off seeing a doctor about it. My eyes have always felt really dry, but this horrifying sensation of ripping some part of them when I wake up had me turn into an insomniac. I wouldn't go to sleep until I was completely exhausted. About 2 weeks ago I was convinced I had to go see the eye doctor as my eye acted up again and the pain was so intense I couldn't do anything but cry for about 2 hours until it stopped. My sensitivity to light had made me almost a total social recluse as flourescent lighting was everywhere. At the doctors office she was very helpful and empathetic to my pain. She went through careful test after test talking me through what she was doing. Finally she added some orange looking dye to my eyes and shined a bright light in them. When she did my right eye, I almost passed out in the chair from the pain and she was convinced she knew what was wrong: Corneal erosion.

She explained to me that the reason I was having a problem was the fact that I had oily skin, a miserable genetic trait that has haunted me with bad acne since adolesence and continued to follow me through my mid-30's. I have become almost compulsive in washing my face and hands to try and keep them dry and non-greasy, but nothing really works very well. I even went so far as to become a vegetarian just to cut down on oil and grease intake, but so far no luck. She mentioned that due to the continually oily nature of my skin, it was interferring with the normal water balance in my tears which makes them very susceptable to dry eye and has evolved into corneal erosion. She said there is really not much I can do about the skin condition and it will be most likely with me my whole life, which confirms the dermotologists diagnosis as well.

She recommended for treatment of my eye problem that I double my daily water intake which is extremely high anyways, but she said I had to drink even more to try and keep my bodies imbalance somewhat under control. She also told me to use Refresh eyedrops every 2 hours while I was awake; one drop in each eye throwing out the capsule after 6 hours as it has no perservatives, it isn't of much use after that period. A nuisance to be sure, but at least my eyes don't burn with drieness all the time like they used to. Also at night I was told to use Refresh P.M. applying a small ribbon of ointment to each eye on the end of a Q-tip just before going to sleep. If it took me longer than 30 minutes to go to sleep, I was to apply more to make sure that my eyes were properly lubricated during the night.

I was still hesistant to try and sleep, but she was so kind and understanding of my situation I found confidence to give a go as the alternative was blinding pain. It has worked very well as I have had only one minor incident since. She mentioned also that the reason my vision temporarily blurs every time I blink is due to the excess oil from my skin, clouding over the otherwise clear vision I would have. The reason I was blind for a day when I felt the tearing sensation was that I had ripped a layer off my cornea it took about 24 hours to regenerate she said. I had actually torn through several layers on my right eye and as a result I would be blind in it longer. She had no recommendations as to how to permanantly reduce oil production in my body so it wouldn't interfere with my tears that keep my eyes moist, but at least for the moment I have a solution that she offered to me and spending $20.00 every 2 weeks for the eye drops and ointment doesn't seem to be that outrageous of a solution if that is what I must do to keep my eyes healthy.

If you are concerned about what to do about your corneal erosion, you might try what the doctor recommended for me and hopefully it will work. I am not sure the same method will work for someone with an actual eye injury though, but if you have oily skin or are curious if that might be the cause just look at something blink once or twice and see if you don't notice things slightly out of focus. If they are then it is quite probable that an oily sheen is coating the surface of your eye which might be the root cause of your condition. If you are afraid to see a doctor as I was, all I have to say is that a possible solution to a problem far outweighs just dealing with it on your own out of fear of what might be wrong.

Peace

[mike1961]

pal01 - How long have you been erosion free for? I'm glad it's working for you but I have to say I'm somewhat skeptical about some of the things your doctor said. Corneal Erosion is partially due to the cells inability to stick down to the base membrane. It's good to keep hydrated but I'm a little surprised that the doctor would tell you to just drink a lot more water than you already already are. I've heard this can be dangerous because it can cause hyponotremia (lowering the bodies sodium levels). You can certainly increase water intake but you may want to talk to a nutritionist and possibly supplement the water with at least some salt or increase your salt intake. But, I'm not absolutely positive of this so one may want to check it out further. In any event, it still seems most logical to me that since corneal erosion happens when one opens their eyes or moves their eyelids, it's best to add artificial tears right before whenever possible. Also, I've become more of an advocate of ointments like muro 128 during the day instead of artificial tears because it lasts so much longer.

Mike