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

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.

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

Dear Doctors Judy & Larry:

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 way....it's not meant to be at all...it'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 again...my 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

Eureka!

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 suggestion.

DrG

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 structure.

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.

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
Pavlov's).

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.

Sincerely,
Mike

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.

Thanks,
Mike

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 eyes.

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.)

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 down.

On another note, I hadn't heard the term "hemidesmosomes" so I did a search and I found this site https://www.emedicine.com/oph/topic113.htm 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

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.

DrG

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.

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 occur?

Mike

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 puncture.

Best,

DrG

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 explanation.

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.