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    Old 03-11-2008, 08:07 PM   #106
    lynz1023
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    Re: Recurrent Corneal Erosion

    Wow! I'm so glad I found this site. I have been suffering from RCE for about four years now. I was almost a year without an erosion until about a month ago. It started with the regular morning erosions, then I was waking up in the middle of the night with excruciating pain! I think REM sleep was actually causing the erosions. Two mornings ago I woke up with an exteme erosion. My eye wont stop watering, and I'm in so much pain!
    Unfortunately, I've just started a new job and I dont have health insurance. Is there anything I can do thats over the counter? I've been using the Refresh PM at night, besides that I'm not sure what else to do. Any ideas?

     
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    Old 03-11-2008, 09:07 PM   #107
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    Re: Recurrent Corneal Erosion

    Hi, welcome! I'm a 'regular' around here and I have a lot of posts describing my history and experiences with RCE...but just to give you a quick response to your question, you might want to try Genteal Gel Severe. It isn't greasy and I think it actually lasts longer for me. I think it's easier to apply though sometimes it feels a little uncomfortable after I put it in. I had PTK/PRK 5 months ago and still have to put something in at night and this product is working well for me. I was using the Refresh PM, but I found it a bit abrasive and one of the board member recommended this. I still keep the Refresh Tears at my bedside for those middle of the night and mornings when my eyes feel especially dry or irritated.

    Evie

     
    Old 03-12-2008, 12:16 AM   #108
    mike1961
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    Re: Recurrent Corneal Erosion

    Lynz - my experience and being erosion free for almost 4 years now is from learning to apply artificial tears with my eyes closed upon awakening. Try to relax and move the eyelid as little as possible until you get the drops in. Lay on your back and let the tip of the bottle touch the sclera at where the nose and eye meets so that gravity works the tears down your eyes. You can't overdose so be liberal when adding drops. Try to not sleep on your back. Also, if you do get an erosion - try to GENTLY keep your eyes closed and do not blink as that will turn a minor erosion into a major one. Blinking will slough off more cells and the excess tearing will wash those away as more erodes. I have found it's best to immediately lay on your back, keep your eyes closed and try to relax and move your eyelids as little as possible. Don't squeeze your eyelids. Just relax and also add artificial tears especially when you feel pain. Keep your eyeds closed for at least 15 minutes and then gently open them. It will tremendously decrease the severity of the erosion. During this 15 minute period of no blinking, eyes closed and relaxed will allow the epithelium to "fill in" the erosion with the adjacent cells surrouding the gap. After opening your eyes, your eyes might feel just fine. If they have that stingy or sensitive feeling try applying Muro 128 ointment but be sure to run warm/slightly hot water on the tube before applying it so that it goes in as a gel rather than a hard ointment.

    On another note to all - it seems that when awakening I almost apply artificial tears carefree these days. I still apply them but it is as if I can be very cavalier about it. It could be due to many factors or a combination. It could be (1) the season (2) the Dwell drops I used a few months back (3) my epithelium is thicker as I have been erosion free for so long (4) my RCES is finally healing - a little. It could also be that maybe after 4 years my RCES is healing a little. I'm not sure but seasons do play a role so I'm still somewhat on guard when I do awaken but my eyes just feel really great lately.

    Message to all - if you don't know what to do start by realizing that erosions are caused by movement of the eyelid and almost always when awakening. If you can learn to awaken with your eyes closed and apply artificial tears then you should be able to avoid almost all erosions. As time goes on and you do avoid erosions, your epithelium will thicken. When this happens your eyes will be more forgiving when you do have slight eyelid movement such as REM or moving around in your sleep and you can eventually avoid all your erosions.

    Best to you,
    Mike

    Last edited by mike1961; 03-12-2008 at 12:25 AM.

     
    Old 03-13-2008, 09:14 PM   #109
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    Re: Recurrent Corneal Erosion

    Hello Evie and Everyone,

    Just to let you all know about my progress with the homeopathy, after trying several remedies, though some seemed to help, none is working for me and the RCE's are happening more than I can stand. I am going to see a new cornea specialist for another opinion in a couple of weeks. Evie, how is the PRK you got, did it completely stop all erosions or do you still get some small ones? Also, how much did it dry your eyes out, and were they dry before your surgery? I am only asking not to be overly curious but because my eyes are already dry and the cornea doctor at my HMO said that is a problem. I really need to do something, I am getting so depressed about this whole situation. It is hard when I set my hopes on something only to find it doesn't work for me, i.e. homeopathy. And I have been with this for 2 years now, and nothing has helped, even after 2 very painful other proceedures (stromal puncture, and laser erosion. I am thinking of this PTK, even though I will have to pay out of pocket for it, over $2,000, but if it didn't work, I don't know what I'd do. Maybe your experience can shed some light on this for me. Rebecca at the dry eye place said she has heard it only works about 70% of the time, and it is hit and miss. I hope you are doing well.
    All the Best to everyone suffering with this condition. Judy

     
    Old 03-14-2008, 09:03 AM   #110
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    Re: Recurrent Corneal Erosion

    Hi Judy,

    First, you can ask all the questions you want, don't hesitate.

    I think my (PTK/PRK) eye was somewhat dry before the surgery but the extent of my dryness only bothered me at night and after waking, I historically didn’t feel it during the day.

    Regarding the dryness after the PTK/PRK, I did notice it and feel a need to use drops during the day, I’m guessing, for the first couple months after surgery. At about 5 months post surgery (today), I still have to use a product (Genteal Gel Severe) at night. In fact, last night I went to bed, I had forgot to put it in and by 1:00 a.m. I felt irritation, so I got up and put it in and was fine the rest of the night and this morning. This week I've felt "that spot" and I think it is the blooming trees and my allergies starting to act up contributing to this. We've alternating had cold weather, so the heat is drying the air and I also am having sinus headaches.

    In terms of erosions, I haven’t had an erosion. I have determined that a new area on my cornea became an issue post surgery. During my painful recovery, this area was the source of pain. So the original site of the injury has been erosion free. This new problem area sometimes acts up for short periods, the worse being that sensation of something in the eye (during the day) but not bad, just enough to make you want to rub it out. I have had, at least 3 instances, at night, when I didn’t put in a night product or it wore off and I experienced some scratching, but nothing as bad as the erosions I was having. That spot can be easily aggravated if I rub directly on it. It seems to depend on the weather, allergies, things like that. I’m hoping it will toughen up over time.

    My other observation is my vision (even with the PRK) is still compromised. It seemed much better immediately after surgery than it is now. I still have the ghosting that I had before the surgery. I’ll talk to the Dr. about it at my next follow up in 4 weeks. Some days are better/worse than others. Morning tends to be worse than later in the day. I was hoping the correction would allow me to read without glasses or contact, but that isn’t so. Even my old underpowered contact doesn’t help. I think it’s not something that a lens can correct. Recently I’ve gone to wearing one contact in my non-PTK/PRK eye, and nothing in my PTK/PRK eye. So now I have mono-vision I guess. I can read with my lens corrected eye, but I can see better in the distant with the PRK/PTK. I am farsighted. I think my distance vision in my lens corrected eye might be better after the allergy and heating season. I’ll have to wait and “see”.

    All in all, things aren’t perfect and they aren’t what they were before I injured my eye. But I have no regrets about the surgery. Everything isn’t “fixed” but the worst of it has been addressed. I’ll work around the other issues, but at least I’m not afraid to go to sleep and wake up and I don’t have those awfully painful erosions anymore. If I did it again, one thing I’d do during recovery is keep my eyes closed and not move them as much as possible for the first couple days—and of course using the preservative free drops like crazy. That might not be necessary for most people, but that would have been better for me.

    Evie

     
    Old 03-14-2008, 09:55 PM   #111
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    Re: Recurrent Corneal Erosion

    Evie,

    Thank you so much for your quick response. Your're experience can really help me and all of us considering this PTK surgery. Atleast we know some of what to expect even though there will be differences. I sincerely wish you all the best and I hope you're eyes will keep on improving. If I get the PTK I will also let this board know of my experience. I think your journal was just a wonderful idea and I thank you for all of us who have been following it. We need all the advise we can gather on this condition because as many of us realize, we are basically on our own trying to figure out what to do since so few of the doctors seem to really have a handle on this. I hope the new one I am going to see will be more knowledgable about RCE's then the ones at my HMO, who were less than satisfactory. We will see and we can hope!
    Judy

    P.S. Welcome Julie 363

    Hope you will find this board helpful to you and your struggles with RCE. Check out the other RCE, PTK, PRK boards as well, and I suggest going back and reading some older posts from the last couple of years. You will see You Are NOT ALONE! Not by a longshot. I hope you find some helpful advice and some comfort here.

     
    Old 03-24-2008, 12:18 PM   #112
    lisa glm
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    Talking Re: Recurrent Corneal Erosion

    Hi All,

    I'm just writing to give you an update on my RCE. I see that a lot of people are still suffering from this and I certainly feel for you. My experience was the same as all of you. I had it for nearly 2 years and just couldn't take it any more. I had 2 strommel punctures went thru an array of muro and other things. Slept with patches on my eye - my eye taped shut and still I had the erosions. Blurred vision constantly. I finally decided to have PRK. I did have to pay for it. But it was definitely worth it for me. It's been two years now and I haven't had 1 erosion. My eye sight is not 20/20 in that eye, but I do not need my glasses for distance any more. It was the best decision that I could have made. It is so nice just to wake up in the morning - NO PAIN!!!! I had dry eye before and occasionally use drops. I know I should more often, but it really doesn't bother me. But I'm sure it would be better if I did. Anyway, if you have any questons, I'd be happy to answer them.

    Lisa

     
    Old 05-07-2008, 07:50 AM   #113
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    Re: Recurrent Corneal Erosion

    Hi all, read some resent posts. I have been errossion free for about 5 months so far. Muro 128 everynight before bed. Also do not sleep on your back. The reason is you slightly open your eye or both just a fraction during sleep. This allows air to dry the cornea and could lead to an errossion. So far since last May 07 I had 2 smaller RCE but nothing a big as before the debridgement proceedure. Doctor says to wait another year before going back to contact wear. I also notice during winter and season change over my eyes get swollen along wiht the lids. Could be alergy?

    Last edited by chuckcap; 05-07-2008 at 07:54 AM.

     
    Old 05-07-2008, 08:05 AM   #114
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    Re: Recurrent Corneal Erosion

    That's great news!

    Swollen lids could very well be the result of allergies. You may want to be sure to wash your face and eye lids thoroughly after being outside or when they start to feel itchy or dry, just to get the irritants off of them. It also may be a mild case of blepharitis, which a doctor can give you something to help, if it bothers you enough. Typically, an antibiotic ointment, lid scrubs, and warm compresses are what's used to treat that problem.

    I have been having luck, too! I have not had a serious erosion since November, and the three that I have had since have been minor. I am still using Genteal Gel at night and Dwelle eye drops (eight times) during the day.

    I have never had debridement or any kind of surgery. It just took lots of patience and care and the right eye drops!

    Best wishes to you, Chuck. Thanks for the good news!

    Quote:
    Originally Posted by chuckcap View Post
    Hi all, read some resent posts. I have been errossion free for about 5 months so far. Muro 128 everynight before bed. Also do not sleep on your back. The reason is you slightly open your eye or both just a fraction during sleep. This allows air to dry the cornea and could lead to an errossion. So far since last May 07 I had 2 smaller RCE but nothing a big as before the debridgement proceedure. Doctor says to wait another year before going back to contact wear. I also notice during winter and season change over my eyes get swollen along wiht the lids. Could be alergy?

     
    Old 05-07-2008, 11:46 AM   #115
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    Re: Recurrent Corneal Erosion

    Hi everyone, got the email notice of the postso here is my update:

    Im almost at the 7 month mark since my PTK/PRK for my RCE. My routine has become one application of Genteal Gel Severe when I wake up in the middle of the night. Using it before bed doesnt really seem to make a differenceI would still have to use it when I awake again. Some mornings, if my eyes feel dry, I put in Refresh before getting out of bed.

    I havent had any scrapes to really speak of. I am suffering from seasonal allergies right now, but my eye is doing well with it. My near vision (reading) still isnt good even with correction, but the distance is fine. Some days my near vision is better though. I use correction (contact) in the other (non-PTK/PTK) eye. I have adapted well .though it took (about) a couple months to feel balanced. It is rare that I use any drops during the day.

    Evie

     
    Old 06-06-2008, 09:04 PM   #116
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    Re: Recurrent Corneal Erosion

    Hi Evie,

    It has been a long time I do not post here. I am reaching my 7 month mark with the BCL in my eye and thank god I am ble to function normally with it . I would like to know how are you doing and I am also curious if you heard something about Moshpit since she too had the BCL for a long period of time and I have not seem her posting anymore.

    Best regards,

    Freidi

    Last edited by Freidi34; 06-06-2008 at 09:05 PM.

     
    Old 06-10-2008, 04:20 AM   #117
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    Re: Recurrent Corneal Erosion

    Hi all,

    I am a UK citizen and have had RCE for nearly 5 years now and have been watching this thread for some time. I recently had PTK and have now decided to tell my story to you all.

    My RCE began after my wife poked me in the eye with her little finger nail. I did not visit the doctor at the time and just put up with the pain. I noticed a lot of pain in the following months and so I vivited the doctors on several occasions over the space of a couple of years. All the visits kept saying that it was just dry eye and that all I could do was use viscoteers or similar. I stopped visiting the doctors because I fealt I was getting nowhere and since they are the specialists I should take their word for it.

    I then noticed that I would have my most severe atacks after a day of soldering (I am an auto electrician), so I( visited the doctors again who gave me anoither referal to the eye clinic again. This time I saw a new doctor who had just moved to the country from Italy and he diagnosed the problem instantly but said there was no cure. He kept putting bandage lenses in for longer and longer periods and whilst the problem was not there all the time I had the lens in, it quickly came back after the lens was removed. Eventually he told me there was no cure and he was really sorry but I would have to live with the pain. I told him about this thread on the internet and that there was a treatment called PTK but he simply said "do not believe all you read on the internet"!

    I than had attack after attack after attack, to the point when I would rather have the eye removed than live with the pain. During this time I weas visiting family in London and when they saw the pain I was in suggested I went to Moorfields eye hospital. I went to the ED there and was seen by a doctor who took one look and said "Who has let this this problem get this bad we need to operate and very soon!".

    Just 6 weeks after the going to moorfields I had the operation. The operation went with a mixed degree of success. I was first asked to sign a disclaimer to say that the operation my not work and worse still I may lose the vision in that eye. The operation was painful and the recovery period was even more painful and legnthy (nearly 3 weeks). It has now been 8 weeks since the operation and the eyesight has not returned fully - I still have very blurred vision in the eye and when I drive I get bad eye strain headaches. I have also had 1 very severe errosion during my firefighter training course. I did not tell the instructors and continued with the course in extreme pain. As part of my training I have to fight fires in a hot house - a purpose built house that they set on fire and send me in with breathing aparatus. The day before the hot house training my instuctor said "do not worry youyr eye problem will all be cured tomorrow". I did not know he even knew about my eye problems but he had noticed the redness and the fact that I kept asking to go to the toilet and coming back with my eye watering (after I had put sonme drops in). He was absolutely right!! After just 1 session in the hot house my eyesight had almost completely returned - all I get now is slight halo's aorund contrast between light and dark objects, and the pain completely cleared up!

    So my advise to sufferes of RCE is to either join the fire brigade, or set fir to your house!!

    I will keep you all posted as to my recovery from now on.

     
    Old 06-10-2008, 01:59 PM   #118
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by Freidi34 View Post
    Hi Evie,

    It has been a long time I do not post here. I am reaching my 7 month mark with the BCL in my eye and thank god I am ble to function normally with it . I would like to know how are you doing and I am also curious if you heard something about Moshpit since she too had the BCL for a long period of time and I have not seem her posting anymore.

    Best regards,

    Freidi
    Hi Freidi,
    Glad to hear you are finally more comfortable. I'm doing pretty good. The most notable things are that I still do get some "scraping" at night on occasion if my eye gets too dry. It is managable though. Nothing like the RCE I was having. Right now my hayfever is bad. Also, I take a medication about one week out of the month that dries me up.--I'm sure these things don't help. The vision still isn't good though, some days better/worse than others, but that's life. All in all, I'm still glad I did the PTK!!!!

    I haven't heard form Moshpit either, hopefully that is a good sign that things are going well for her.

    Evie

     
    Old 06-10-2008, 04:15 PM   #119
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    Re: Recurrent Corneal Erosion

    It seems that there are many things people can try and some work with a greater degree of success than others depending on the individual. I know for me I'm still basically about 4 years erosion free ever since learning to awaken with my eyes closed and I just add artificial tears before moving my eyelids. That combined with not sleeping on my back and I can ward off almost any erosion.

    Given the "fire idea" from above I'm wondering if a long intense sauna might have a similar effect (be sure to keep hydrated and check with your doc first since a sauna probably like exercise is something you build up to in terms of time in the sauan). I'm thinking perhaps the dry heat from the fire might have something to do with it. Not sure but perhaps the super dry hot heat causes the underlying moisture (under the cornea) to evaporate and allows the epithelial cells to set and get a good tight grip on the underlying membrane.

    Keep us advised of techniques.

    Mike

     
    Old 06-10-2008, 06:25 PM   #120
    Freidi34
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    Re: Recurrent Corneal Erosion

    [QUOTE=noonereally;3602652]Hi all,


    Hi Noonereally,

    If you kindly could tell me what was the longest period you stayed with the Bandage contacts in. My doctor does not plan to let me with it forever and of course I know there is a big chance the problem could come back. The doctor tells me that PTK is used as last resort for the RCE. He told me that if the problem comes back he would do a total scraping of the cornea with the diamond burr technique. Did you hear about that? Anyways, I heard about PTK the very first month I was diagnosed with this condition and my initial trauma was the same as yours: finger nail. My life bexome a night mare since, and once a week I had small erosions and every three montns a big one. The only thing that calmed me down so far was the lense and thanks to it I could continue with my life, take care of my two little children and pursue my master's degree. Other than that, I would have been paralised and not knowing what to do. Please let me know your thoughts on this,

    All the best and a spedy recovery for you

    Freidi

    Last edited by Freidi34; 06-10-2008 at 06:34 PM.

     
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