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    Old 12-29-2005, 08:49 PM   #1
    mike1961
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    Re: Recurrent Corneal Erosion

    EBMD - Couldn't agree more about another opinion...but, perhaps I could disagree in only one more opinion...why not two, three or even four....more important though, one should ask their doctor just how many PTK's they have done or do every year and perhaps also what kind of laser they use since some are more up to date and accurate than others. I remember reading a post way back where someone saw as many as 38 doctors (seems excessive) but point well made in that it's certainly okay to seek several opinions. I sometimes think doctors often treat RCES with what they know and not always with what is best. Often they are not experienced with PTK and / or ASP (but I would not recommend ASP). But, there are still many alternate courses of action as I listed that may be done first.

    Happy New Year to all,
    Mike

     
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    Old 01-02-2006, 10:20 AM   #2
    Spshul_Kay
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    Re: Recurrent Corneal Erosion

    Hi Everyone,

    I've suffered from mapdot thumbprint corneal dystrophy for over 10 years. When I first discovered I had it, my doctor tried a bandaid contact lens. It didn't hurt while it was in, but taking it out...it had stuck to my corneal. Then it was on to the ocuvisc and refresh..now it's been B & L Muro 128 ointment at night and the drops during the day.

    However, lately, it's not working that well. I haven't had any episodes of the cornea tearing, but my eyes feel swelled, dry and my vision is constantly blurry. Also, I am having alot of ghosting. I don't know if that is a symptom or I'm not getting enough sleep.

    I have made contact with the Wilmer Eye Institute to make an appt. with a specialist to see what other options I have available. In the meantime, does anyone know when DeHydrex is due to be available?

    Also, I'm very glad to see that I'm not the only one with this condition. When I was diagnosed originally, the doc said it was a rare condition. It doesn't seem that way!

    Thanks for you time!

    Kathy

     
    Old 01-02-2006, 08:52 PM   #3
    lisa glm
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    Re: Recurrent Corneal Erosion

    Hi all,

    I have gone to several opthamologists this past year and this is the only one that had diagnosed my condition. The reason that I was doing the PRK was because of my eye sight too. I thought that since I was going to go through the procedure anyway that I would have my eye sight fixed. He had suggested that also. He said that he does at least 2 PRK's a week. I had looked up his credentials and he has had great right ups in medical journals. I do feel that I trust him. I am going tomorrow for the contact bandage to stop the erosions so he can measure. He does have his own equipment.

    Thank you for the responses. I do appreciate them. I was happy just to meet him to realize that he knew what I was going through and diagnosed it. I haven't heard anything more about the dehydrex. Maybe I had the placebo and that is why it didn't work for me.

    Lisa

     
    Old 01-03-2006, 05:21 PM   #4
    mike1961
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    Re: Recurrent Corneal Erosion

    Lisa - my understanding is that if you tell them that you are still having erosions then you get the real thing second time around.

    On another note...I'm trying to decide what to do about being slightly nearsighted...I don't like glasses but they do work. I tried contact lens and for some odd reason the contact lens only correct distance but make everything blurred up close and even intermediate vision. I have an astigmatism but I do not understand why this is only a problem with contact lens and not glasses. I'm wondering if perhaps I need a second opinion from another optometrist. They tried it with soft lens and suggested I could try a hard lens that covers the entire cornea since covering part of the cornea would not work well because the lens then tends to move more and that would not be ideal especially for those with RCES. Also, I'm wondering if PTK or even PRK would help but my fear is that like contact lens it could reverse everything where things are only clear far away. Any thoughts?

    Thanks,
    Mike

     
    Old 01-04-2006, 10:32 AM   #5
    mike1961
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    Re: Recurrent Corneal Erosion

    RCE-ME2 - I don't really have any erosions anymore. My last major one was July 2004 but ever since I discovered that all I need to do is wake up eyes closed still and relaxed and then add artificial tears to lubricate my eyes, I'm fine.

    In answer to your questions....Closing your eyes after awakening does not make the erosion go away....ever....What it does is this....first - as I've said before..one should always add artificial tears before moving their eyelids upon awakening but if they get an erosion they should immediately drench their eyes with artificial tears while keeping the eyes closed and as still as possible. Continue keeping them closed and relaxed while adding artificial tears as necessary for pain. Now, what happens is the surrounding cells of the epithelium "fill in" the gap. Once the gap is filled in, the pain does subside quite a bit. The gap fills in rather quick. However, if one blinks then they are causing more cells to slough off before the gap can be filled in (like rubbing a crater in a mountain). The problem is the epithelium is now thinner than it was before (thus many of the cells have "eroded") and it takes a LONG time for the epithelium to build back up again and could easily take six months or longer. So, it's very important to go as long as possible without an erosion for real healing to take place and the more major erosions lead to an even thinner epithelium and set one back even further. Obviously, the thinner the epithelium, the more likelihood of erosion.

    Regarding the opposite eye getting an erosion...I've never had an erosion in my left eye but I can tell that it is more sensitive than it used to be so I apply artificial tears in that eye as well in the morning and use an ointment at night. Personally, I think an erosion in one eye has very little to do with the other eye getting an erosion. It's more likely coincidence regarding the finger poke causing the opposite eye to have an erosion. Rather, I believe it's due to an underlying dystrophy combined with sleeping with one's eyes partially open and entering or being near the fourth decade of life. Therefore, it would have happened anyway. The good news is that there are some really effective ways to prevent it which I've mentioned in a a few prior posts. To me, regarding PREVENTION, it's more important what one does when they wake up RIGHT BEFORE the erosion is about to occur (add artificial tears) rather than what they do 8 hours earlier (applying ointment). But, I do both and I have been erosion free for well over a year.

    Best to you,
    Mike

     
    Old 01-04-2006, 01:23 PM   #6
    JaneNY
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    Re: Recurrent Corneal Erosion

    Lisa, do you set an alarm to wake yourself up during the night? I did this for months. I'd set it for earlier than I'd have my first nightly erosion, so to speak, to 'beat' it, and add more muro, and refresh drops first if I woke with eyes feeling stuck. (When things were really bad, I was setting my alarm for 2 different times during the night. Maybe that's one more thing to try. You'd want to have a quiet gentle alarm so you aren't startled awake. I stopped doing it about a month ago, when I realized I was sleeping through it alll the time, but I still wake a little earlier then my regular rising time and add drops before opening my eyes.

     
    Old 01-05-2006, 05:54 AM   #7
    garden73
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    Re: Recurrent Corneal Erosion

    I had bandage contacts in last week and while I was on vacation I got an erosion under my contact. I dealt with it for 24 hours before I couldn't take it anymore and went to a local eye doctor in the town I was staying. He took the contact out. I think he was pretty ignorant on this condition. I've met several doctors who don't seem to understand RCE very well. My doctor is great but sometimes I need to see others ...like ER visits. When I got back from vacation my doc was out of town so I saw one of the other docs in her office ... he was so unsypathetic. He didn't think it was a big deal that I have erosions in both eyes. He kinda said .. well they are not hurting you now, right? Well, duh ,, it's 4pm and my erosion was at 2pm 2 days ago and it feels fine now. He basically said oh well deal with it. I'm sure if he felt what it felt like to have an erosion he would be a little nicer!!

    Ok .. just compaining for a bit!! Does anyone know the percentage of people with this condition? Just curious.

    Have a great day!

     
    Old 01-05-2006, 03:10 PM   #8
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    Re: Recurrent Corneal Erosion

    I just suffered from a corneal abrasion last week and from reading this thread am now terrified of what lies ahead. I have to put Systane drops in my eye 4 times a day and I use ointment in my eye every night. Does everyone who suffered an abrasion automatically have the RCE? Is there no hope? I'm just so scared, I have no idea what to expect!

     
    Old 01-05-2006, 03:41 PM   #9
    MichelleHolmes
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    Re: Recurrent Corneal Erosion

    Just another question, how badly was the abrasion on your eye? Or did many of you just have your RCE out of the blue? I'm also curious to see if your RCE started immediately after the initial abrasion.. if that was the case.

     
    Old 01-06-2006, 12:54 PM   #10
    mike1961
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    Re: Recurrent Corneal Erosion

    Michelle - there are things you can do. Read through my posts as well as others. I find adding artificial tears before opening my eyes has kept me erosion free for well over a year. It's not easy to find a good doctor since most are only comfortable treating what they know and are not humble enough to admit there shortcomings and refer you out. Along with adding artificial tears here are the cures I believe really work (outside of desperate measures and last resorts such as a transplant):

    1. Adding artificial tears in the morning before opening one's eyes in the morning along with an ointment at night.

    2. Prednisone / Doxycycline combo.

    3. PTK (second applications have a 99% success rate if the first fails)

    4. Dehydrex drops (still in trial phases but appears to have a 90% success rate and one may have their doctor contact Holles Labe to get in the trials).

    Mike

     
    Old 01-06-2006, 12:56 PM   #11
    mike1961
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    Re: Recurrent Corneal Erosion

    Michelle - absolutely not...many heal just fine from a corneal abrasion and never get RCES. Others sometimes get RCES even without an abrasion due to an underlying dystrophy. The telltale sign is awakening with stabbing pain because the dry eyelid pulls the cells off (like a bandaid sticking to and pulling off a scab). But adding artificial tears in the morning before opening one's eyes lubricates the eye so as to prevent erosion. The longer one goes the more healing that takes place and less likely one is to get another erosion.

    Mike

     
    Old 01-09-2006, 07:34 PM   #12
    shilpabhavani
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    Re: Recurrent Corneal Erosion

    Hi! Happy New Year to ALL!!!!

    I am very thankful to all the active members here on this message board. For the first time (I am saying this with my prayers to GOD) for last 2 months I have been without any major erosions. I had a couple very small ones - which really did not last more than 5-10 minutes but they still happened.

    In the night, I add a lot (means really lot 1/2 inches) of Refresh PM ointment and then go to bed. If at all I wake up in the night, I do add Refresh tears.

    I think the biggest thing which helped me was to learn waking up with eyes closed. I add Refresh drops to the eye and keeping it closed - try not to open the eye for 4-5 minutes - actually I sleep sometime for 10-15 minutes. Then again add drops and then open eye. Looks like it really really helps.

    In the day, I add Naturale II drops - with preservative free vials - which I can use for whole day (one vial can be used for 12 hours). If at all my eye starts feeling dry or itchy, I add Systane Tears or Refresh Tears.

    I DO take Doxy 50mg once a day! I do not know how much it contributes - but my doctor says he does not want me to change anything what I am doing. He is really amazed with the results!!

    Even after these measures, sometimes my eye feels dry and no matter how much drops you add in, it does not feel comfortable. That time, I add excessive drops and try to keep my eyes closed for 15-20 minutes. It helps!!
    I do not know if it is erosion during the day or just the dryness - but it happens.

    I am really thankful to all of you, especially Mike - who motivated me thru' messages.

    I really pray GOD for all of us to provide enough patience to succeed in this time consuming battle.

    Thanks and Regards,

    Shilpabhavani

     
    Old 01-09-2006, 09:05 PM   #13
    mike1961
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    Re: Recurrent Corneal Erosion

    shilpabhavani - first, glad to hear things are working well for you. Hears my feedback from my own personal experience to add to your post (hope it helps):

    In the night consider warming the tube of ointment under your armpit for 1-2 minutes (if you don't want to get out of bed) or warm water before applying. It feels much better when applying it in your eye(s).

    Consider if you wake up in the night adding the refresh tears before opening your eyes but then if there are several hours left before morning consider adding (warm) ointment (use a booklight if you warm the tube against your body and don't want to get out of bed).

    Why not Muro 128 ointment instead of Refresh PM?

    I agree with you about the biggest thing which helped me was to learn waking up with eyes closed. Yes - you know how much I preach this. "nip" the RCES right before it happens...head it off... Also, you may have read my posts about even if you accidentally move the eyes and and erosion occurs it's even more important to immediately drench the eyes with artificial tears and keep then closed gently for at least 10-15 minutes (after an erosion) so that no more cells get sloughed off. It's all seems so logical.

    Upon awakening, I find I just gently insert the tube in the corner of my eye (at the highest point while on my back so that gravity allows the tears to quickly run down my eye). I squeeze the bottle until I really feel the drops all over in my eyes...only takes 5-10 seconds rather than 10-15 minutes. Remember this...you can't overdue it when applying artificial tears to your eyes...squeeze the bottle with the tip slightly in your eyelid touching your scalera and it should lube up your eyes very fast then just open them gently.

    Regarding the doxy - It definitely helps control RCES...normal recommendations from what I have read are 50 mg twice daily for two months but I haven't taken it in a long time...but I may go back to it "off and on" short term for acne control.

    When you said "Even after these measures, sometimes my eye feels dry and no matter how much drops you add in, it does not feel comfortable."

    It's a thinned epithelium (almost like an erosion). Consider warming and adding ointment (definitely warm it when it feels slightly irritated or dry...no problem doing this during the day but do warm the ointment). Consider Muro 128 unless you just have a problem with it but still strongly recommend warming the ointment.

    I think your doctor is "right on" to not change anything if it's working well for you. But, as you gain more control over waking up eyes closed still and relaxed, it's okay to experiment a little (ie: it only takes me 5-10 seconds in the morning rather than 15 minutes - maybe I insert the tip directly on my scalera and squeeze the bottle so that I really feel those artificial tears in my eyes). Experiement and learn how to "heal thyself." Consider adding some drops and if your eyes are irritated during the day and don't feel quite right then after adding drops warm the ointment and add ointment. Ointment lasts a lot longer than drops for lubing the eyes.

    Most important...focus on a goal...6 months with no erosions (then one year, don't get complacent) ...minor ones only set you back a little...major ones set you back a lot...this is fact...when you get an erosion the surrounding cells "fill in the gap" but now the epithelium is thinner than it was before and it takes a LONG LONG time for completely healing to occur (even then...the process can always slowly revers the other way unless one stays attentative). But, once you have healed, chances are you will not wake up with a major stabbing erosion because the epithelium is much thicker than it is after only say a month or two without an erosion...keep at it...I've been free for about 18 months.

    Best to you and keep us all advised (6 months erosion free awaits you then one year...then you will be where I'm at 18 months and continuing),

    Mike

    Last edited by mike1961; 01-09-2006 at 09:20 PM.

     
    Old 01-10-2006, 02:09 PM   #14
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    Re: Recurrent Corneal Erosion

    hi! I'm new here and am amazed that there is a message board for this disorder!
    I had a eye injury 4 years ago. My 1 yr old son scratched my eye. After a week or two I started having more attacks similar to the very fiirst injury.I finally went to a opthamologist and he put me on muro 128. That was about 2 yrs ago. I used it regularly before bedtime for about a month and then would start decreasing use as I thought maybe it had healed. I would have another episode and once again start using regularly at bedtime and gradually decrease again as time went on without an attack. This has went on for 4 years. Recently I have went as long as 5 or 6 months without an attack. This last week I started waking up with my eye slightly matted together in the mornings. I assumed I had gotten a infection of some sort and started putting some "gentak" ointment that I had from my kids having pinkeye. Well, since then I have had an episode every night. I am not close to a eye doc so it's very hard for me to get to one. I was reading about "wetting your eyes" before you wake up to prevent an attack. My problem is I just wake up in the night without any warning having a attack. There is no certain time. Sometimes I have two a night. This is the most miserable thing I have ever experienced. Use to after an attack after a few hours my eye would feel fine but now it bothers me almost all day and then I have another attack at night and then cycle continues. Is there any OTC meds for pain or anything. I guess I need to go back to the doc but the last time he mentioned using the contact bandage and I would have to drive 2 hrs every day to be sure no infections are occuring. I work and can't take off that much. Any help would be appreciated. Thanks in advance

     
    Old 01-10-2006, 10:47 PM   #15
    mike1961
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    Re: Recurrent Corneal Erosion

    (long post here...sorry...but I guess I just type fast and want to help out)

    LWMom - Welcome aboard... We all totally understand your situation...can't say that too many doctors do though....Here's my advice and hopefully others can add...

    First of all, in my opinion it sounds to me like you can treat this all on your own (based off the info from your post) but I'd certainly advise finding a doctor if you can who is closer than two hours away.

    What you do....1) before awakening 2) before bed 3) if you get an erosion......will completely determine whether or not this thing is going to control you or if you will control it.

    1. Before awakening I strongly advise you to learn to wake up eyes closed still and relaxed. Sleep in the same position every night and avoid sleeping on your back.

    You said your problem is you just "wake up to an attack." Honestly, make an affirmation every night that when you awaken you will wake up with your eyes closed still and relaxed (then add artificial tears). Remember, if you don't then when awaken and you dare to move your eyes...you will be greeted to excruciating and stabbing pain....let that motivate you enough to at least try and wake up with your eyes relaxed and closed. You will be amazed at how fast you can learn to awaken even in your sleep as your eyes start to feel dry...it's classical conditioning and I believe you can learn to awaken eyes closed, still and relaxed. Believe this...you CANNOT wake up with an erosion if you learn to awaken as your eyes start to dry; it's physically impossible. But first just learn to wake up with your eyes closed.

    If you awaken in the night first add artificial tears before opening your eyes then reapply the Muro 128 before going back to sleep. Either warm the tube under warm water or if you are like lazy me, and don't want to get out of bed, get a book light and warm the tube under your armpit for 1-2 minutes before applying it. That matted together feeling you mention is just excessive dryness in the mornings due to RCES. Just apply artificial tears. Lay on your back and gently insert the tip of the bottle in your eye by your nose so that gravity allows the drops to easily flow down your eyes. Never fall asleep on your back and try and fall asleep in the same position every night which will help you to learn to awaken eyes closed, still and relaxed.

    2) Before going to bed - warm the tube of muro under warm to hot water and apply it liberally. According to my eye doctor I cannot overdose on Muro 128, ointment or artificial tears. I can use as much of it as I want and whenever I want....I have total control. You said you were doing great on Muro 128 so I'd suggest going back on it every night and when you awaken first add artificial tears (I like Refresh tears) then warmed Muro 128.

    3) IF YOU GET AN EROSION: you want to minimize the damage as much as possible so that it's minor and not major or you will be set back more. To do this, first of all DO NOT BLINK...keep your eyes closed for at least 15 minutes and add artificial tears as needed for pain while your eyes are gently closed (you can't add too much). Lay flat on your back while relaxing. I love Refresh tears but everyone is different. Gently open your eyes. Next, If they feel better but even if they are tender (or any time during the day they don't quite feel right) DEFINITELY warm the muro 128 tube under warm water and apply the warmed ointment to your eyes. They should feel a LOT better (but be sure to warm the ointment - in fact you should really always apply it when it is warm). You can even apply warm muro several times throughout the day when your eyes just don't quite feel right but be advised as you know it can blur your vision for a few minutes so don't be too quick to drive right after applying it.

    You said you just wake up in the night without any warning having a attack. This is because your epithelium has really "thinned out" possibly from those other pink eye drops. Just use the warmed muro before bed, don't sleep on your back and make the affirmation that you will wake up eyes closed still and relaxed. Some of us sleep with our eyes slightly open which is really bad for RCES so if you can try to gently squeeze your eyes closed a few times before bed and position yourself if you can in such a way so that your eyes are less likely to open (some on this board use an eyemask but I get away without one...I think I have just been doing this ritual so long that it's all I need).

    I'm curious...you said...."This is the most miserable thing I have ever experienced." I feel your pain and still remember 18 months ago (my last serious erosion...my last minor one was a year ago) I remember calling the doctor "on call" at night and him saying to me when I told him the excruciating pain I was in..."so what do you want me to do about it?" Three doctors later I found one who had treated RCES. Anyway, I'm curious...do you know if it is really more painful than childbirth? They say that the eye has more nerves per square mm than anywhere else in the body except the brain.

    At this point in my opinion I don't think you need a bandage lens and wouldn't recommend it. If you follow the advice above I think things should start to dramatically improve in two weeks but if you need an "extra lift" we are here to listen and you could always consider the antibiotic doxycycline 100 mg daily but bear in mind antibiotics increase the risks of yeast infections in women.

    Best to you and keep us all posted here...We have all been there and know exactly the frustration and powerless feelings you are going through. But things can get better and there are a LOT of things you can do even if everything I mentioned above does not work but I would venture to guess that almost always it should.

    Mike

    Last edited by mike1961; 01-10-2006 at 10:57 PM.

     
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