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pengworm79 01-11-2008 12:23 PM

PLEASE HELP! question about treatment Recurring corneal erosion
I've been reading some of another thread about recurring corneal erosion. A couple of days before this Thanksgiving my baby son scrached my cornea with his fingernail. I've been through painful things before but this was like nothing I've ever known. The pain was unbearable. To make matters worse I am a SAHM to two small children. When this happened I couldn't open either eye because even opening the other eye would cause the injured one to hurt.

So it's now January and two days ago I was riding in the car and all the sudden the pain started again. It was the foreign body sensation along with some horrendous burning this time. Now between the initial scratch and this incident I had minor problems with it. Sometimes in the middle of the night I'd wake to feed the baby and my eye would water and burn for a bit and sometimes it would just happen in the middle of the day. Also I was initially treated for this in the ER not by an eye doctor. They just gave me antibiotic drops and sent me on my way.

SO, now yesterday morning I went to the eye doc because this was happing again and the pain was so bad I coudn't function. They said it was a recurring erosion and gave me a bandage contact lens. Doc then said I'd come back Monday. Well I was fine all night last night even the times when I woke to feed the baby. Then this morning I wake up and it's terrible burning. So bad that again I have to keep both of my eyes closed.

Went back to eye doc this morning and he said the contact was too tight. He then gave me a bigger one as well as two different kinds of eye drops. They are Akpentolate and Vigamoz. I believe one is an antibiotic and the other he explained something about dialating the eye and muscle spasms? Then he had me purchase some preservative free thera tears and I am to come back Monday. The other two drops he gave me I am suppose to put in four times per day till I go back.

Does this course of treatment sound normal? I am so heart broken to find out that this is likely something that will plague me for a long time. Financially it's been over $500 in less than 24 hours and that alone is stressful. However not being able to care for my two kids is even worse. My husband is a deputy sheriff so he can't just take off of work when this happens and we don't really have much of anyone to help out.

I'm now in constant fear of this happening again. I would do just about anything to not go through it again. Can anyone tell me more about this PTK surgery or whatever it is? I know I may be jumping the gun but I'd still like to know more about it.

I believe the docs said they'd probably take the lens out Monday and I'm terrified. Well honestly I'm terrified to go to sleep tonight. Thank goodness this all went down when my husband was on his days off or I don't know what we'd have done. Unfortunately tonight he goes back to work so god forbid this happen again.

My heart goes out to all of you with this. By the way do you find that people just do not understand the severity of pain that you are dealing with?

Also any advice you might have to help prevent this from happening again?

tramore35 01-11-2008 06:24 PM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
I have worked for an optometric physician for over 18 years and have seen patients like you come in quite often. The contact lens that the Dr put on you is used to keep the cornea covered and promote healing. The antibiotic drop is prescribed to help prevent infection. The other drop is prescribed to keep your pupil dilated. The reason this is done has to do with the fact that you do not want any problems with the iris (such as an iritis--which is even more painful believe it or not). The cornea is very fast healing so my advice is to use the drops as prescribed and give it a few days. Use the artificial tears frequently (you can't overuse them) and I am sure you will be fine in a couple of days. The most important thing is to follow the directions of your doctor exactly. PTK is not an option for you. Corneal transplants are reserved for patients who have serious corneal problems (like Kerataconous). It might also help to wear sunglasses for a few days (even in the house) as light can cause extreme discomfort. Good luck to you and keep us posted.

gentealgel 01-12-2008 10:26 AM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Hi, pengworm79. It sounds like you have good doctors, who are doing all of the right things. Since your recurring corneal erosion is from an injury, there is no reason to think that you will have the problem for the rest of your life. I have a corneal dystrophy, and so I have to manage recurring corneal erosions all of the time. However, given some time to heal, you should be okay. I have a friend at work who got a deep scratch from her son's fingernail, and she had recurring corneal erosions, and they lasted too long for her to withstand. She went through a stromal puncture procedure and has been great ever since with no affect on her vision. Her recurring corneal erosions went away forever, as it was over 11 years ago since the accident.

It can feel like a very scary problem that will never go away, but that is not the case-- especially when it is caused by an injury rather than a dystrophy.

Best wishes to you.

pengworm79 01-12-2008 11:48 AM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Well today I woke up with horrible pain in my eye again, not as bad as yesterday but still do much to bear. The wonderful doctor was on call and met me at the eye clinic. He decided to give me a new contact and said he'll do the same tomorrow since for whatever reason by morning it's getting too painful.

He did say that the erosion was healed 75% more today than it was yesterday so that's great. He had me discontinue the drops to dialate and has me still doing the antibiotic, theratears, and now the muro 128 ointment as well. He's hoping to be able to take out the lens tomorrow or monday. Then I will do the ointment every night for at least three months he said. Let me tell you I'll be putting it in for the rest of my life if it'll help this from happening again.

However I'm confused though about what gentealgel said. You mentioned your friend being scratched by her son's fingernail. That's exactly what happened to me originally back in November. I thought it had healed but now this happened again.

I could get through this bout with it easier if I wasn't scared to death that this is going to continue happening. My doctor said there's a good chance that it good despite our best efforts. He said should that be the case that there are other options then like the laser surgery. I know that it wouldn't be done now in my case but I cannot imagine going through this anymore. Two times was enough already. Not to mention the doctor bills will be sky high. I know surgery would be expensive but at least then I would likely not have this happening over and over.

I'm just going to hope and pray that this second time is the last time this happens. Does anyone ever get the initial injury like me (scratched nail) and only get one recurrence and then none ever again??

Thanks for your help everyone!

pengworm79 01-12-2008 11:55 AM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Don't know if this makes a difference but my scratch or now what they call my erosion is right in the middle of my eye. Just wanted to add that in case it makes any difference.:confused:

gentealgel 01-12-2008 03:33 PM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Sorry to hear that you are still having problems, pengworm79. My heart goes out to you; it really does. This is such a lonely and scary problem to have.

You are not misunderstanding anything. Often, there will be superficial healing, but a little dry eye or rubbing (even just from your eyes and eyelids) will cause the sticking, and that loosens the less-than-healed "anchors" that secure the epithelium to the basement membrane of the epithelium. According to a great ophthalmologist I spoke with, it takes at least eight weeks for the anchors to secure themselves. So, your doctor is giving you the three-month program for that reason.

I found some good articles on the problem, but we are not allowed to direct people to other websites from here, so I cannot post them. However, they are out there, and you can learn a lot from them.

Best of luck to you.

mike1961 01-12-2008 04:50 PM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
pengworm79 if you are constantly waking up with erosions, it won't be long before you are afraid to go to sleep at night (if that has not happened already). Change that thinking into being afraid to move your eyelids when you awaken in the morning. Then, when you awaken, keep your eyelids still, closed and relaxed. Have a bottle of artificial tears on your nightstand and gently insert the tip of the bottle in the corner of your eye by your nose and apply a lot (while keeping your eyes closed).

Next, slowly open your eyes and you will avoid erosions. I've done this successfully for over 3.5 years with Refresh tears. Just recently I purchased Dwelle artificial tears on the net which supposedly can cure the condition in some cases (such as when it is brought on by a scratch). But, I won't know for sure until at least a year when we go through all four seasons. But, I can say, if you master the technique of relaxing in the morning, laying on your back when you apply articial tears and feeling them lubricate your eyes while your eyes are closed, you can get very good at the technique and possibly avoid every potential erosion as I have. Also, consider not going to sleep while laying on your back but always apply the artificial tears when you awaken while on your back applying where the nose and eye meets and apply in your eye so that gravity allows the tears to lubricate your eyes.

This will allow you to avoid erosions until a "cure" is available for you.

I actually thought of this 3.5 years ago when one of my RCES lasted 10 days which did bring on an infection and iritis.

Also, if you get an erosion, lay flat on your back, do not blink your eyes. Keep them closed for 15 minutes and try and relax. Add artificial tears as you feel pain (you can't overdose on artificial tears). But, be sure to keep your eyes closed for at least 15 minutes as every time you blink or "squeeze" your eyes closed hard you will make the erosion worse. If you get an erosion, it's best to keep it minor than create a major one by constant blinking when your eyes are still dry and then when they tear up, the tears "erode away" the epithelium causing you to tear up even more and even more erodes. Best, to relax with your eyes closed as the "surrounding epithelial" cells "fill in the gap" and adhere while your eyes are closed and relaxed without the eyelid moving sloughing off more cells.

Best to you,

pengworm79 01-12-2008 08:55 PM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Well let's just say you are right on about being afraid to go to sleep. That would be why I'm up and on the computer right now instead of asleep. I do at least have the peace of mind of knowing that I'll be seeing the doctor tomorrow morning. So at least if I do wake up in pain (which I'm sure I will) then help won't be too long away.

So let me get this straight...Is it bad to sleep on your back period? If so why, I know there's probably a good reason but I just can't figure it out.

Now about waking up. I had read some of this advice earlier yesterday so this morning before I opened my eyes I tried to do the eye drop thing but it didn't seem to work. However maybe my pain was just due to irriataion from the lens and not the actual erosion? I don't know really.

So when you wake up regardless of how you are laying you should lay on your back and with your eyelids closed then put the drops into your eye by your nose...and lots of them? Are we talking drenching yourself? I know this probably sounds so stupid but any little thing I could do to help is so important to me.

The bit about not blinking when you feel an erosion is good advice. I know for me though the pain is so intense my eye just sort of seems to spasm. Boy do I wish I would've known this all before this happened. I'm sure all my rubbing right after my son scratched me just made it worse.

You know since it healed after the initial injury I wish I would've known what to use when I got that sort of burning sensation. I'm wondering if I had done that all along if I would be in this boat now?

Also I mentioned to the doctor that at least now with the contact in when I use the theratears my eye seems to feel worse after. He told me it was okay to use those or the antibiotic drops or the muro 128, whichever felt better to me right now. Later on will it be okay to use the muro instead of the drops?

Are there any other products like drops or ointments that you might recommend? Sorry to ramble it's just this has been a complete and total nightmare as you all unfortunately know firsthand. Like I said if I knew I wouldn't be going through this for awhile I'd be better able to make it through the pain and hassle. The constant worry is stressing me out.

gentealgel 01-13-2008 06:44 AM

Drops & Tips
pengworm79, Mike's post really covers a lot. His ideas have helped me to get past erosions in the past eight months since they started happening to me. He has also taught me a lot about the mechanics of the problem, as he just explained in his last post. I am so grateful, Mike, for your helping out even after you have gotten your problem under control for years.

I also use Dwelle eye drops, and I wear tranquileyes goggles at night. The Dwelle did not fix everything right away, but over time, the erosions became "smaller." Think of how a skin wound heals-- around the edges first. Then, they became more infrequent, and my last serious one was in November. I was told to use them five times each day. I also use Genteal Gel at night a few times each night. When things were really bad for me, I set the alarm for every two hours to re-apply the gel. It is a hassle, but when things were at their worst, this routine got me through two solid months without an erosion.

Unlike Mike, my erosions happen when I sleep and wake me up, so the morning control with the drops has not been something I could do until the last two months, when the nighttime wake-ups have stopped. To help me with morning control, I got a pair of tranquileyes goggles. They keep my lids closed, which gives me time in the morning to wake up without popping my eyelids open. They also keep the environment around my eyes moist and reduce the amount of sticking.

If you do not have epithelial basement membrane dystrophy (ebmd), you really do have a great chance of putting this problem behind you forever. So, while I share these tips, know that things may be different for you. Your doctor sounds great, giving you the advice to use whichever of the drops he recommends that works best for you. I, too, have a level of discomfort with Theratears. They are really close to the "crying" tears' composition, and crying makes my eyes worse, far worse. It's hard not to cry with this problem, but try to avoid it. For a plain drop, I like Hypotears.

Hang in there!

pengworm79 01-13-2008 07:58 PM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Could it be true? Maybe I'm not doomed to life with this excruciating pain and the anxiety of never knowing if and when it's going to hit and throw my life into a crazy mess?

So for a person with my case, a scratch by a toddler's fingernail with a recurring erosion a little over a month I a case that's likely to move past this? I know everyone's different but I just thought maybe some of you might know.

I just can't shake the feeling of being stuck with this forever and feeling so helpless about it. I should be asleep again by now since five am comes early, but again I'm afraid to go to sleep!

Today the doc put another new contact in. Tomorrow I go in and see the doc I saw when I went in the first time this past Thursday for the recurrance. He wasn't nearly as thourough as the doctor who's cared for me the last three days. Anyhow I'm sure the lens will be coming off and I am TERRIFIED!!!!!!

I'm so afraid this one will be better and then I'll just get another one the next time I go to sleep without the lens!

Maybe if I had just been using the ointment and drops after the initial scratch I wouldn't have had the recurrence?

Evie4 01-14-2008 07:52 AM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
I’m sorry to hear you have injured your eye and now suffer from RCE. My sibling had the same type injury and did suffer some subsequent erosions. After continued use of ointment before bed (for 2 years), has been erosion free. I had a more severe injury, and after 15 months of regularly occurring erosions, I had PTK and I still have to lubricate my eye at night as I continue the healing process—I get up half way through the night to reapply… Everybody is different, the doctors just can’t tell you/us how it’s going to go. My doctor told me (at the time of my initially injury) I could potentially suffer an erosion in a week, a month, a year….there is just no way to know.

You are getting excellent advice from the people here. I hope it helps to relieve some of the anxiety around it. I know exactly how you are feeling. I’m keeping my fingers crossed for you!

pengworm79 01-14-2008 11:53 AM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
Evie and everyone, thanks for your help. I realize what you mean when you say there's really no telling what's going to happen as everyone's different. I'm going to do another post discussing my appointment today with the other eye doctor because I want to hear other's opinions of what this guy had to say as opposed to the doc that took care of me for the prior three days.

mike1961 01-14-2008 02:08 PM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
(long post - sorry)

Pengworm and all - The main thing to remember is if erosions happen when you awaken and open your eyes- your last chance to intervene is right before the erosion happens. That means adding artificial tears before moving your eyes. This will lubricate them and then slowly move your eyelids to make sure your eyes are libricated. If they feel cemented shut to your eyelids then they should magically become unglued as you add enough artificial tears and you really feel them become "unglued."

I have had RCES for a little over 3.5 years and certainly do not claim to be any expert in the condition. Rather, I will say that due to my own personal experience and things I have learned on my own as well as advice I have tried from others on the board has helped me to become my own expert on my RCES.

With that, for me personally, I find that when I sleep on my back I'm more inclined to "pop" my eyes open in the morning without time to realize to keep them relaxed and closed when I awaken. Also, for whatever reason if not gravity or something else, they just seem to be more inclined to "stick" to the eyelid (or feel more dry which is that sticking sensation). If one must sleep on their backs then they can always try to tilt their head very much to one side. But again, everyone is different.

The most important thing I find, is every time you awaken, if you can get any kind of artificial tears in your eyes, you will lubricate them and then slowly move your eyelids, you are far less likely to have any erosion at all. Many times, I as well as others on the board have awakened to find their eyes feel like they are "glued" to their eyelids. However, rather than try and force them open like running a windshield wiper without water, we relax and don't move our eyelids at all and lay on our backs. Then we gently insert the tip of the artificial tear bottle in our eyelid (so it gently touches the scalera - white part of the eye) by our nose and squeeze the bottle so we feel the tears in our eyes. Because we are on our backs and we are putting the tears in by our nose, gravity allows the tears to fall everywhere in our eyes thus lubricating them well. Within 15-20 seconds that "glued/stuck" feeling should be gone and you should easily be about to slowly with caution open your eyes without any problem or any erosion.

Some prefer warming an ointment at night. I used to do this all the time years ago. I have read controversial articles that ointments can make the overall RCES condition worse but have not seen any follow up studies as to why. I know that Muro 128 ointment can stop the condition. The best so far for me at present are the Dwelle drops but again - it's still early to say for sure if the condition is better or cured. Either way, I have it under full control by adding drops before moving my eyelids when I awaken.

Try it and as you learn to master it, it should make a huge difference.

I'm not a big fan of BCL (bandage contact lens). I think if one already has a major erosion then it certainly reduces the pain but one pretty much has to get the antibiotic drops otherwise I think the lens has a much greater chance of causing an infection. Overall, I think it's better not to use them but that is just my own opinion while others will swear by them. I think the less you have to rely on them the better since they are more likely to cause infection and deprive the eye of oxygen (even though the newer ones are somewhat permeable - I still think there is still going to be some oxygen deprivation with them in all the time).

Think of the epithelium as having a certain thickness and when it wears down you are more likely to have erosions. When you have an erosion the "surrounding cells" fill in the gap and the epithelium is now "thinner" and it can take up to 6 months to a year to thicken up again. Every time you blink day or night cells are sloughed off and being rejuvenated all the time. But, when you have an erosion the epithelium has to fill in the gap and really thins out leading to greater chances for more erosions. The longer you go without one the thicker it gets and the process reverses leading to a less likely chance of erosion. So remember - as you are healing, when you awaken, never "pop" your eyes wide open. Always add artificial tears first. My doctor has told me you can't overdose on artificial tears. Put them in and slowly open your eyes- make sure you feel you can easily move your eyelids. If not, add more artificial tears.


gentealgel 01-15-2008 04:45 AM

Re: PLEASE HELP! question about treatment Recurring corneal erosion
pengworm79, I'm sorry to hear about your less-than-satisfactory meeting with your ophthalmologist. It may be worth it to find someone who can work with you. It may be good to seek out someone who works with dry-eye patients and people with corneal dystrophies. (Lots of people have dry eyes and do not call it such.) Although these two things may not be your problem, per se, these kinds of ophthalmologists are trained to handle cases that require long-term care. Otherwise, you may wind up in the hands of a retina specialist who does not know what to look for in your cornea or a lasik doctor, who wants to do surgery and desires a fast turn-over. I went through five doctors, including two ophthalmologists and one cornea specialist, before I found someone who understood my problem and was trained to "read" the cornea and provide long-term care. The key was a person who can deal with dry eye and diseases of the cornea. The work of finding this ophthalmologist was so worth it.

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