Recurrent Corneal Erosion Syndrome

Discussion in 'Optometry Archives' started by Mike Appell, May 7, 2005.

  1. Mike Appell

    Mike Appell Guest

    Is this an orphan disease? I'm wondering if anyone knows just how many
    people get this or have this. I had it real bad for almost a year where I
    was getting erosions almost twice a week until I accidentally discovered on
    my own a technique to become erosion free which I think could benefit many
    others. I know it's a serious problem for some, but I'm wondering why it
    seems like it is a neglected condition in the medical community?

    Mike Appell, May 7, 2005
    1. Advertisements

  2. Mike Appell

    LarryDoc Guest

    What makes you think it's neglected? I have dozens of patients with
    RCE, either from laceration injury or, more commonly, epithelial
    basement membrane disease (EBMD).

    It's actually a lot more common than one would expect and is one of the
    reasons why people seek out eye medical attention.

    You keep posting that you have a technique that works for you. Why don't
    you tell us about it?

    --LB, O.D.
    LarryDoc, May 7, 2005
    1. Advertisements

  3. Mike Appell

    Dr Judy Guest

    Not neglected as far as I know. Did your doctors not suggest any treatment?
    It is in the textbooks, the etiology and course are known and you will find
    published literature if you look. There are treatments for it: the first is
    lubrication of the eye at bedtime, second would be addition of a hypotonic
    gel, third are various minimal corneal scarring method using either needles
    or laser.

    Dr Judy
    Dr Judy, May 7, 2005
  4. Mike Appell

    Mike Appell Guest

    Dear Doctors Judy & Larry:

    you said: <<There are treatments for it: the first is lubrication of the
    eye at bedtime, second would be addition of a hypotonic
    gel, third are various minimal corneal scarring method using either needles
    or laser.>>

    You are correct and I have read that this is the standard course of
    treatment. That is the problem. I would absolutely love to find a way for
    the medical community to consider radically changing the treatment methods
    so that my method is a strong consideration between #2 and #3 that you list
    above. #3 is surgery which I have read carries risk and is still no
    guarantee for success. I'll outline the basic theory of my method below.
    I'm not an MD and have no medical background but I have RCES and became
    erosion free overnight when I accidentally discovered my technique which
    requires no surgery whatsoever.

    First - please accept any apologies if this post sounds pedogogical in any's not meant to be at's just my steadfast adherence to
    this technique because it works so well for me and I believe it can work for
    many many others. Also, I got side tracked before so I couldn't finish my
    post; once apologies....It's after midnight so I'm not going to
    get interrupted by young kids.

    Perhaps I feel that RCES is neglected because of my own prior battles and
    experiences before finding a really good doctor myself and also because of
    so many others and their posts and experiences I have read about on the
    internet. Also, it just seems like it is a very difficult and challenging
    problem to treat (at least for me and the posts I have read). I keep
    reading that once one considers surgery that there are risks and it is still
    no guarantee for a cure. It was when I was in between" doctors that I
    discovered a method that has been truly amazing for me. Because it has been
    so invaluble to me, I'm seriously looking at preparing a non-profit website
    based on my personal experience with it and all the details about how I
    apply my method and how I'm now erosion free.

    In general, my method is a skill that must be acquired and relies on the
    patient learning to wake up with their eyes closed, still and relaxed and
    then liberally add artificial tears BEFORE opening their eyes every time
    they awaken. The eyelid then becomes unstuck from the eye and allows the
    person to safely and easily open their eyes upon awakening without the
    eyelid ripping the epithelial cells right off the cornea. I compare it to a
    bandage that is stuck to a scab and the person rips the bandage off and it
    just takes the scab with it. It's really quite that simple, yet I did not
    even think to do it for a year after getting RCES. It was when I was
    getting conflicting advice from doctors not knowing what to do and
    concurrently I was paralyzed with fear every night and morning and when I
    woke up one morning with my eyes closed and cemented to my eyelid, feeling
    terrified, it was then that I thought to use artificial tears before opening
    my eyes. It was purely an accident that I discovered this technique. From
    that point, I literally became erosion free overnight.

    Please don't get me wrong, I am a strong believer in nightly ointments and I
    use those as well. But I believe what one does one minute before an erosion
    is about to happen will have a far far greater impact than what they do
    eight hours before. If my eyelid is going to try and rip the cells off my
    cornea in the morning, it makes far greater sense to me to intervene right
    before it happens rather than eight hours before. But at best, why not do
    both? I have awakened so many times in the last year where I could feel my
    eyelid badly cemented to my eye (after applying ointment at night) and it
    was clear to me that trying to use the muscles of my eyelids to pry my eyes
    open would have ripped the cells right off my cornea. Yet, by simply
    relaxing and applying artificial tears, my eyelid became "unglued" to my eye
    and it was painless.

    I've also discovered a method I believe can minimize any erosions should
    they occur (that is yet another article I want to again put on my non-profit
    website which of course would advise everyone to always check with their
    medical practitioner before applying any of my ideas). In other words,
    before I had applied this technique, I was getting 2 erosions a week. I
    started learning ways to minimize the impact of those erosions so that what
    might have been a 5 (on a scale of 1-10), I found ways to minimize it to a 1
    or a 2.

    One other thing that confuses me is that I have read a lot of articles on
    the internet saying that RCES is a failure of the epithelial cells to adhere
    to the cornea. Again, I'm not an MD, but unless someone can explain this to
    me, this just does not seem correct or at best very incomplete. My personal
    experience has been somewhat the opposite. It seems to me like my
    epithelial cells were desperately trying to adhere as best they could to the
    cornea and failure to adhere was not a fault of the cornea. I believe the
    problem was they were trying to adhere to everything else as well including
    my eyelid. Since my eyelid just kept "tugging" at them every time I
    awakened, it's no wonder to me that the cells could not "stick down" when my
    eyelid keeps working the cells loose trying to force them off my cornea.
    It's like the cells are trying to stick down to anything and everything (not
    just the cornea). My epithelial cells would stick down just fine so long as
    I don't let my eyelid stubbornly tug at them every time I awaken. Now, I
    just apply artificial tears every single time I wake up before opening my
    eyes. So, I still have the condition of RCES, but I'm erosion free now and
    I'm no longer terrified of going to sleep at night with that horrible
    uncertainty I harbored for so long. From a patient's point of view, RCES
    creates a lot of anxiety and my method now shifts it so that I control my
    RCES rather than RCES controlling me. Maybe others are doing something
    similar but I have yet to read anything about this suggestion anywhere I
    have looked. I believe this method is a skill and personally I could see it
    having a very very high success rate but I would not want to speculate on
    just how much. The idea is simple; keep the eyelid from ripping the cells
    off your cornea and you will avoid all erosions when you awaken. The best
    way to keep the eyelid from ripping the cells off the cornea is to learn to
    wake up with your eyes closed, still and relaxed and add artificial tears.
    One's eyes may then be safely opened without an erosion. There are a lot of
    other details that I have discovered but that is the general theory. I
    suppose the greatest criticism one might have is how one can learn to wake
    up with their eyes closed. For me, the potential for excruciating pain was
    a huge motivating factor. That, along with the fact that it's difficult to
    open one's eyes when then are cemented shut anyway in addition to it
    becoming second nature over time makes it easier to learn than one might
    think. Whatever course of action one chooses or has already chosen, I don't
    think it is ever healthy to allow one's eyelid to ever attempt to tug away
    at the epithelial cells, which to me creates an even stronger argument for
    always applying artificial tears upon awakening for one who has or is
    recovering from RCES.

    I welcome your feedback. Thanks,

    Mike Appell, May 8, 2005
  5. Mike Appell

    Dr. Leukoma Guest


    I think we understand the process. Once one has seen several dozens of
    patients with the problem, one generally gets the hang of it.

    There is little doubt that epithelium is sticking to the eyelid. This
    is why the majority of patient experience pain in the morning or upon
    awakening when they first open their eyes. I suspect that not a few of
    them will learn how to avoid this process, according to the laws of
    B.F. Skinner's operant conditioning. The mystery then is why do these
    erosions typically happen in the same place? Why then does this seem
    to happen in eyes that have undergone previous corneal trauma? This
    speaks to a problem with epithelial attachment. So, regardless of how
    it "feels" to you, the phenomenon has been studied.

    By tradition, the best way to treat RCE is prophylactically, i.e. keep
    it from happening in the first place. How? By using light petrolatum
    ointment, usually with sodium chloride which seems to stengthen the
    epithelial attachment to its basement membrane as well as providing a
    lubricating barrier against lid adhesion.

    There is no question that your technique can work as well, even though
    it seems a bit more involved. I do know of some people who go through
    a similar ritual because of extreme dry eye. Thanks for the

    Dr. Leukoma, May 8, 2005
  6. Mike Appell

    LarryDoc Guest

    I'm glad you found a method of managing your RCE that works for you.
    Your method is one that is indeed recommended to patients (who are so
    inclined and disciplined) and one of a short list of valuable treatments
    designed to avoid the dry lid from tearing off the epithelium. Again,
    this is not neglected or a not understood physiological issue. It is
    clearly related to dry eyes or physical trauma (like rubbing) affecting
    weak attachments of parts of the epithelium to the underlying corneal

    The list:
    1.ointment or gel-type lubricant drops immediately prior to closing eyes
    before sleep.
    2. bandage contact lens added to #1 above.
    3. flaxseed oil taken during the day to improve tear flow.
    4. dietary changes to improve tear production
    5. low dose tetracycline therapy to improve tear production
    6. control of allergy, especially contact and airborn. Control of lid
    allergy and blepheritis, as below.
    7. lid scrubs and hygiene to control dried secretions from causing
    abrasive material entering the eye.
    8.. analysis of medications, prescribed and OTC that might have a
    dehydrating effect.
    9. diagnosis of systemic disease that might contribute to dehydration or
    inflammation, notably autoimmune type diseases.
    10. debridement of defective epithelium to attempt stronger attachments
    upon regrowth, including needle puncture, laser, etc.

    In my own case (yes, I am a sufferer! Result of injury and genetic
    predisposition to EBMD), I use "your" treatment or at least drops
    immediately upon awakening, combined with frequent use of drops before
    bedtime, avoidance of dietary salt and sugar after 7pm and when a RCE
    occurs, no contact lenses for three days (boooo hooo!).

    Good luck with your management and I hope you experience few episodes of
    the discomfort associated with RCE.

    LB, O.D.
    LarryDoc, May 8, 2005
  7. Mike Appell

    Mike Appell Guest

    Dr. Leukoma - I have a few questions and comments about your reply:
    I agree 100%
    I'm not quite understanding what you mean here by "not a few of them will
    learn how..." But you mention Skinner so I would assume you mean that most
    would be successful in learning based of Skinner's principles (as well as
    I question whether it is also happening because of the strong attachment of
    the eyelid pulling the cells off. In other words, to me it's like a bandage
    that pulls a scab right off when a scab is stuck to the bandage. I can't
    believe one would suggest in this situation that it is the fault of the scab
    to not adequately adhere to the skin.
    But when that fails why don't doctors suggest applying drops before opening
    one's eyes in the morning (or if they do it must be a select few). It's so
    effective. Why have the two "fight with each other?" In other words,
    suggesting a Muro ointment at night to strengthen the attachment only to
    allow the eyelid to weaken it in the morning makes no sense to me when one
    can easily add drops so that the eyelid does not weaken the attachment come
    the morning.

    Mike Appell, May 9, 2005
  8. Mike Appell

    Mike Appell Guest

    LarryDoc: The method is not in the list you provided. Perhaps you may be
    mentioning it verbally but from what I have experienced and read, many
    doctors do not even mention it at all. Also, I think it is kind of ironic
    in that the stronger the attachment of the eyelid to the eye, the worse the
    erosion would be. The irony is that adding drops before opening one's eyes
    is all the more safe in that there is less chance of accidentally opening
    the eyelid and pulling the cells off the epithelium.

    For me anyway, before utilizing this method I found that there were definite
    things to do when one does get an erosion. The goal should be to make is as
    minimal as possible. I have learned that the absolute worst thing one can
    do (besides rubbing the eye) is blink. Yet blinking is almost an automatic
    reaction to the pain, causes more cells to slough off which then of course
    causes more pain and more tearing which leads to yet more blinking only to
    continue to "wash away" even more cells that were trying to stick down. I
    have found that laying flat on my back, adding a lot of artificial tears
    while keeping the eyes closed (no blinking) for at least 15 minutes while
    trying to relax alleviates a lot of potential damage that could still
    happen. Perhaps these are just things left to the patient to discover
    because I have not read them in any articles and doctors have not mentioned
    them to me.

    One thing that still has me totally perplexed is why it seems that sleeping
    on one's back is almost a sure guarantee for the eyelid to stick to the eye
    (those with RCES). Does gravity drain the tears out of the eye so as to
    help cement the eyelid to the eye?

    Regarding my feelings of it being a neglected issue, perhaps we could agree
    that clearly some patients are getting substandard treatment for this
    condition. I would venture to guess that only a select few even mention
    what I have mentioned above. Either because they think many patients don't
    have the discipline or perhaps it shifts too much responsibility on the
    patient. But, I still think it is worth mentioning because it cured me
    overnight. About a year ago I had a massive erosion (which lasted 10 days)
    and I called my doctors' office in excruciating pain and the doctor on call
    said "so what do you want me to do about it?" Afterwards, when I saw my
    doctor I got the usual "go back on Muro 128." Isn't 9 months of erosions
    enough for a professional to realize that a treatment of ointment and drops
    was not working? It didn't take me long after that to find another doctor.

    Mike Appell, May 9, 2005
  9. I've been telling patients for years to put in tears as soon as they awake
    BEFORE they open their eyes, both in patients with RCE and just very dry

    You mention the adherence to the lid so it can't be the corneal adhesion.
    The problem is the relative adhesion. In RCE syndrome, the hemidesmosomes
    that help the epithelium basement membrane adhere to Bowman's membrane are
    defective. Therefore the epithelium can slide around as a layer on the
    surface of the cornea. It is easily picked up with sharp forceps, or pushed
    into fold with a wet cotton applicator. When the layer then adheres to the
    dry eyelid, the poor adhesion to the cornea is not enough, and it
    preferentially sticks to the lid conjunctiva, and is torn off. In fact,
    healthy epithelium sticks well to the corneal surface, and can be picks off
    in bits and pieces. In RCE syndrome, as you pick up the orn edge, it just
    stretches and keeps lifting off, and it is hard to develop a smooth edge to
    the area because it seems to just all keep on pulling off. This is done when
    anterior stromal puncture is being done, so there is a nice smooth surface
    to work on. It makes it hard to determine where to treat up to, because you
    really cant tell where healthy adherence starts. (Just did one a few days
    ago with this exact finding.)
    David Robins, MD, May 10, 2005
  10. Mike Appell

    Mike Appell Guest

    Dr. Robins - do you think if I continue to add drops in the morning and
    continue to be erosion free, is there some point where true healing will
    take place? I had a trauma to my right eye about two years ago which
    started RCES for me. I do feel my left eye stick every so often even though
    I have had no prior trauma but I've never had an erosion in my left eye.
    Since I started applying drops upon awakening, I've had no erosions in
    almost a year.

    If you have been telling patients for years to put artificial tears in their
    eyes before they open them then I believe you are far more knowledgeable in
    this area than most. I don't know if you have suggestions of what one
    should do if they get an erosion. I believe the course of action one takes
    when they immediately get an erosion will determine how bad it will be. In
    other words, I believe there is a proper procedure of steps to take so as to
    minimize the erosion when it happens. I don't know what those steps are but
    I've tried to figure out the best course of action to take because no doctor
    has ever told me and I've never seen any articles on it.

    My doctor has told me that the epithelium will "thicken" over time which
    will help the healing process. In other words, when one gets an erosion,
    the cells surrounding the erosion "fill in" the gap and the epithelium is
    not as thick as it was before the erosion making it more prone to future
    erosions. He said the longer one goes without erosions, the thicker the
    epithelium can become and the more time the cells have to properly stick

    On another note, I hadn't heard the term "hemidesmosomes" so I did a search
    and I found this site which is by
    many MD's and they also write in their article that corneal erosion is a
    neglected disorder which by coincidence is exactly what I had stated in my
    original post.

    My hope is that over time things stay the same or get better. Thank you for
    your feedback.

    Mike Appell, May 10, 2005
  11. Mike Appell

    Dr. Leukoma Guest

    I think this works only for patients who have sufficient self-control
    to avoid opening their eyes before instilling eyedrops in the morning.
    Some patients are actually awakened by an RCE before they have had any
    opportunity to instill artificial tears. As a prophylactic measure,
    using ointment at bedtime seems a better solution.

    Dr. Leukoma, May 10, 2005
  12. Mike Appell

    retinula Guest

    I agree totally. its hard to find the bottle of artificial tears with
    your eyes closed. ;)

    i recommend using an ointment before bedtime-- just about anything,
    e.g. erythromycin, works fine IMHO.

    retinula, May 10, 2005
  13. Mike Appell

    Mike Appell Guest

    I agree that ointment is a good recommendation at night and I do use
    ointment at night. But, what is one to do when it fails? My prior doctor
    just kept telling me to use it again and that was it. I was getting
    erosions about twice a week and they were occurring in greater frequency and
    intensity. Honestly, it's really not difficult at all to find a bottle of
    artificial tears with one's eyes closed. It's always on my nightstand along
    with an additional bottle in the drawer. In any event, if one can learn to
    awaken with their eyes closed, it's relatively easy to add drops. The real
    question I have is if one can keep the eyelid from pulling the epithelial
    cells off every morning and avoid all erosions, will real healing eventually

    Mike Appell, May 10, 2005
  14. Mike Appell

    Dr. Leukoma Guest

    I am familiar with some cases in which the RCE seems to resolve in
    time. There are also treatments. From what I understand, PTK is the
    most effective, followed by diamond keratectomy, followed by stromal


    Dr. Leukoma, May 11, 2005
  15. The admonition to put drops in immediately upon awakening is really for
    those patioents who have very dry eyes in the morning, and who have the
    mindset to have the bottle in reach and remember not to open the eyes. Many
    can't do that.

    It is not really for those who get RCE's, which often occur while sleeping,
    sue to rapid eye movements, and awaken one with pain. These people do, as
    the OD's suggested, need to use a lubricating ointment that lasts all night.
    Perhaps your got worse due to a preserved ointment, which can irritate the
    epithelium. Most are preservative-free these days.

    Hemidesmosomes are capable of regenerating if they have been damages, in
    many cases, but some do not. It may take up to 4-6 months. It is not an
    epithelial thicknes issue. When the epithelium sloughs off,it is really
    quite thick, but just unattached, so I disagree with the other doc's

    Another reason you may be worsening is not necessarily because you have a
    traumatic RCE. Yes, this could have aggravated an underlying problem,
    specifically anterior basement membrane disease (also known as
    map-dot-fingerprint, Cogan's microcystic disease, and other monikers). This
    is a frequently progressive disturbance of the basement membrane that
    attached the epithelium to Bowmans layer. It can be usually seen on careful
    slitlamo exam, with characteristic irregular shaped lines ("map"), tiny
    [Cogan's] microcysts ("dot"), and whorl-like lines ("fingerprint"). This
    problem can be seen in both cirneas usually because it is a corneal
    dystrophy that is in the genes, not due to an injury. If you have evidence
    of this, it could explain why you are getting worse.
    David Robins, MD, May 11, 2005
  16. See my other posting today also.

    Also, I tell patients who do get RCE to keep ointment and a cotton taped-on
    eyepatch at home to immediately use to patch if an erosion starts. Leaving
    it open and blinking is sure to get the edges rolling and make it larger. It
    also reduces pain to keep it patched.
    David Robins, MD, May 11, 2005
  17. I myself have frequent dry eye on awakening. Haven't goten an erosion yet,
    but I follow my own instructions - I keep a bottle of tears where I can get
    to it by feel, and if my eyes are not feeling right, I just open a crack and
    put in the tears, and massage it a bit to distribute it. I also use this if
    I wake up at 4 am to go to the bathroom, and can't open my eyes.
    David Robins, MD, May 11, 2005
  18. Mike Appell

    AJ Guest

    When I was having the most difficulty with RCE (which had been the
    result of a nasty fingernail to the cornea), I would be awakened during
    the night by the RCE. Putting drops in my eye at that point was moot
    since the erosion had already ocurred. Once I started to use the muro
    128 and be very careful about not rubbing my eyes, etc. the RCEs were
    fewer and further between. I use the ointment every night in both eyes
    and have not had a problem in a couple years or more. I do believe that
    the longer one goes without a RCE, the stronger the adhesion to the eye
    (versus eyelid). Obviously the salt in the muro helps this adhesion
    process. At any rate, from the literature I've been able to digest,
    treatment success really depends upon several factors such as how the
    RCE began, whether the membrane was susceptible to RCE anyway and
    trauma set it off, or whether it was just a nasty trauma that needs
    time to heal.
    AJ, May 11, 2005
  19. Mike Appell

    brushfire Guest

    I'd like to thank everyone for discussing this problem here and thought I'd
    toss in my experience. I've been suffering with RCES in my right eye for a
    couple of years now. It's gotten to the point that a serious episode only
    happens every few months or so, but to keep it to a minimum I have to get up
    EVERY TWO HOURS at night to relubricate; otherwise I think the episodes
    would be much more numerous. Perhaps I need to develop this discipline to
    keep my eyes closed when becoming awake, but I'm not sure if it's possible
    to train myself. Before I got the RCE, I was a light sleeper anyway and
    often woke up one or two times a night.

    Even without the serious recurrences, my right eye just never feels "right".

    When the alarm rings in the middle of the night, I've noticed that the right
    side of my face is often mashed into the pillow. I'm wondering if this is
    contributing to the problem in a couple of ways. First the friction of the
    eyelid against the pillow, and second, perhaps contact with the cloth is
    drying out the lubrication prematurely. When I go to bed I avoid that side,
    but I guess I gravitate to it when I fall asleep. Would an eyepatch help
    here if it is thought to contribute to the problem?

    A couple of other weird things I've noticed with RCE. I'm extremely
    near-sighted and with my glasses off and looking at a distant, strong, point
    light source, I can "see" the defect in my cornea. Without a defect I just
    see a fuzzy, circular ball of light. With it, there is a small black dot in
    the lower left quadrant near the outer edge at about the 7 o'clock position.
    When I have a recurrence the dot widens to a circle that slowly goes away
    after a couple of days. But the dot NEVER goes away.

    The other weird thing is that since it started, my right eye is very
    sensitive to newsprint, but only at night. If I try to read a newspaper
    after 7 pm, I get a stinging sensation in my right eye. Was wondering if
    anyone else with RCE had experienced this.

    Thanks for letting me vent!

    brushfire, May 12, 2005
  20. Mike Appell

    Mike Guest

    Dr. Robins: My comments:

    First, I'm not getting worse. My right eye (the one that sustained a
    trauma) is stable and I don't get erosions anymore because I always add
    ointment at night AND drops in the morning. It could be that I sleep with
    my eyes partially open which is why on some morning it feels so cemented
    stuck to the eyelid. One day I'll probably set up my video camera as an
    experiment to see if this is true. My left eye starting getting very dry
    and sticky in the morning about 6 months ago (no traumas) so I started the
    ointment at night in that eye and drops in the morning as well.
    I think if one is aware of it and the pain in store for them, most could
    probably easily learn it especially when you consider classical conditioning
    and learning theory. Also, the tougher the eye sticks, the easier it is not
    to move it because it becomes so difficult to move the eyelid over such a
    dry eye.
    My eye doctor (a corneal specialist) does not believe one can get erosions
    while in REM especially when accompanied with an ointment and I tend to
    agree. Interesting that he also said he does not believe the eye actually
    "sticks" to the eyelid but rather is just extremely dry and therefore it's
    easy for the eylid to slough off the cells unless one uses an ointment at
    night and immediately adds drops upon awakening.
    Ointments don't last all night...that is the problem. If they lasted all
    night, who would get erosions in the morning? My doctor says they last
    anywhere from 4-6 hours but I told him that sometimes I wake up after only a
    few hours and my eyes are already dry. That's when he said it's possible
    that I may be sleeping with my eyes open. Of course, when I wake up in the
    middle of the night, my ritual is the same... first add drops, then ointment
    and then back to sleep I go with no erosions.
    Nope...always used Muro 128 and sometimes Refresh PM; never used anything

    Very interesting thread we have going here.
    Mike, May 12, 2005
    1. Advertisements

Ask a Question

Want to reply to this thread or ask your own question?

You'll need to choose a username for the site, which only take a couple of moments (here). After that, you can post your question and our members will help you out.