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Hi SRoman, I suffered with RCE for 3 years before finally giving in and having stromal puncture done last Fall. Actually they did it 3 separate times over the course of 2 months. The doc wanted to keep a bandage lens in for 3 months after the procedure in order for the eye to heal but I still had erosions with the lens in place and unfortunately I got a blister under the cornea due to the eye being starved for oxygen with the lens in there. He took the lens out and I continued to get erosions but less frequent than before the procedures (it was happening several times/week and sometimes several times/night). It has now been several weeks and I'm hoping that things have finally settled down. I used Muro, both drops and ointment, for over 3 years and finally decided that it seemed to be making matters worse, so I started using Tears Naturale drops during the day and upon awakening at night before opening my eyes and I use Genteal Gel before bed and also each time I awaken. This seems to be working much better for me. The gel tends to crust on my lashes which helps to keep the lid shut at night.
I've had my corneal erosions for over a year and a half. Very painful - blurry vision occurred almost every night. I had strommel puncture done twice - did not help. Finally June of 2006 I decided to get PRK. I needed glasses and I figured this would help my problem and fix my vision. Well I have to say - 1 year later I have not had 1 erosion. My vision is 20/30 and I feel great. My recovery time from the procedure was not that long and not painful at all. I've seen that some people were in a lot of pain, but I have to say I was not at all. I had on a bandage contact lens that was taken off after 5 days. I think that it was the best thing that I've ever done. I wasted a year trying all those other remedies that never worked for me and I was miserable. Hope this helps!

Lisa;)
[QUOTE=lisa glm;3060300]I've had my corneal erosions for over a year and a half. Very painful - blurry vision occurred almost every night. I had strommel puncture done twice - did not help. Finally June of 2006 I decided to get PRK. I needed glasses and I figured this would help my problem and fix my vision. Well I have to say - 1 year later I have not had 1 erosion. My vision is 20/30 and I feel great. My recovery time from the procedure was not that long and not painful at all. I've seen that some people were in a lot of pain, but I have to say I was not at all. I had on a bandage contact lens that was taken off after 5 days. I think that it was the best thing that I've ever done. I wasted a year trying all those other remedies that never worked for me and I was miserable. Hope this helps!

Lisa;)[/QUOTE]

Lisa, thanks for the post. I'm seriously considering talking to my doctor about this as he mentioned it during the first visit of my injury. It's been a year and I have given up going without a contact at night because I just can't stop having erosions.

Evie
Hello All,

I am new to this thread so this is very long to give background and ideas. Next time I post it will be way shorter, so I apologize for the this being soo long. I originally found the old RCE thread with approx over 112 pages, I almost cried when reading several pages, except my eye hurts so much from what I am going thru crying would only make it worse. I am so sad so many are suffering so much , but also so relieved I am not alone. I couldn't agree more with so many posts (off the old thread of fustration with the eye doctors (specialists,etc.) who give you so little advice and time and rush you thru. They definitely don't understand the sheer misery of this condition. I am trying many things. My backgroung is I have been suffering with recurrent corneal erosions ( RCE) for almost 2 years now. They use to be a severe one every few months, this past year it is every 1 to 2 weeks, sometimes a mild one followed by a more intense one the next night. Moderate to severe pain, blurry vision that can last for days, and not get back to what is normal for me some time longer, only to have another erosion before that. I had an old eye injury from an accident over 20 years ago , both corneas were scratched badly, for around 5 years after that I had recurrences, then all they did was patch up my eyes (with alot of ointment) for a few days. Finally they seemed to heal and I only had a couple of recurrences many years later. Now I am over 50 years + and this problem started with the dry eye syndrome, then a few erosions ( abrasions) once every few months to the constant ones I have now. I have tried every gel , ointment, drop, etc., but even with the best self care my left eye still seems to do it even while my eyes are closed. I have read the REM state when your eyes move while sleeping ( chasing rabbits effect) it can happen. You awake in pain with a eye running with tears. I find keeping my eye open seems to help alleviate the pain better, and then only closing again after pain has diminished. Of course putting in some sodium chloride drops can help somewhat. I have had such fustration trying to get to see a doctor when you need to because as you probably all know too well, they have to see you when the erosion is fresh or they can't see it. Trying to time this has become almost as much of a problem as the pain itself. Half the time it is a weekend, or the rest of the time the Doctor is all booked up, you have to beg, plead etc. to try to get in for urgent care. I have Kaiser (HMO) and I can tell you it is a real problem there. I love all their ads on TV "Thrive with Kaiser" , NOT. Instead of all the spending on the TV ads they need to get more eye doctors, it is like being in a factory or assembly line there. Anyway, I want to share with you all what I am doing what has worked for me and Not worked well. I liked genteal gel for sever dry eyes at night and the moderate one for day, but am recently re-thinking this as I have a hunch it might be contributing somewhat to this condition. I have switched during the day to riteaid over the counter eye drops because they have sodium chloride in the "inactive ingredients" and I have read that is a key ingredient one should use. They help, I found Muro 128 5% sodium chloride drops to be much too strong for my eyes, it really stings (only for a few seconds) but did not help me at all, and my lubricant eye drops from the drug store were so much better. At night I have switched back to using an ointment instead of the Genteal Gel. I find that the mineral oil in the ointments can be irritating and the one I found with the least percentage of mineral oil in it so far is Tears Natural P.M. by Alcon. It is harder to get in the eye though because it is softer, one trick is to have the ointment touch the eye which seems to help it adhere, before you complete the squeeze out from the tube. Using a small amount rather than too much has been better, too much seems to make the eye too sticky and can cause an erosion-for me anyway. I also have genteal PM ointment which is my 2nd best choice.
LASER SUGERY; I had a CORNEA SPECIALIST DO a laser proceedure in office where he lasered the spots where he saw erosions. He did several places, sent me home with antibiotic drops and ointments, No Pain Killer!!!
When the anesthesia wore off the pain was excrutiating, after several hours, my lid was swollen, my eye was constantly running, couldn't put any ointment in because it just would run out, my nose on the left side totally was running as well till it was red and sore from constant blowing in tissues, and the top of my head was so painful, I was a mess. I couldn't eat , sleep, or do anything but lie on my back in such pain I actually though about killing myself ( I would never do it, but the pain was 24/7 and worse than the worse erosion I ever had, even the time when my husband took me to the emergency room at the hospital for a severe erosion (that was a big mistake and another story for another time). Anyway the doctor who did my laser surgery was gone, he did not give me pain pills, no soft contact bandage, I left desperate messages on his phone. He called ,me three days later, was sincerely and totally sorry for what I went thru, he had left for a trip out of town, and had just got back. He apologized for not giving me any pain management, and said "he though I would be all right." He only spent a few minutes with me before he suggested the laser surgery (this was my first visit with him), so I do not know how he came to that conclusion. He said this would Never happen again, he would take care of pain in the future. I actually felt sorry for him, he was obviously very dismayed and ashamed of what happened. I finally healed from the laser proceedure, pain lasted for several days but not as Severe as first 2. I was erosion free for 3 weeks, then I had another one , and another , etc. I went back to him and he did a Stromal puncture for a mild erosion in a totally different area, he said he didn't do that area with the laser. Well I never had an erosion in that area before either, I wondered if the Laser brought that on. Anyway in that "other area" the puncture seemed to work as it never reoccured there, he also gave me alot of pain management including soft contact lens bandage which got me thru the first day. But where he originally did the laser, my eye never felt completely healed where he did do the laser. Before that in between episodes my eye felt healed like the other eye, after laser surgery if always felt like it was going to tear or a pulling pain, even when the erosion of the week was healed. When i mentioned this the doctor had no response.
I have seen another eye doctor , he did stromal puncture on the recurring area, he could see the laser scars. The pain was bad but not anything like the laser surgery. Vision is still blurry but improving, I will let you know if this works. The other doctor who did the Laser on me wants to do a PRK on me, but after the nurse told me I will get a 14 page waiver to sign from the hospital I got nervous and did not do it . Why 14 pages, what the heck are the complications? also dry eyes are a complication with both PTK and PRK, and most of us RCE sufferers have this condition. Also, am terrified of going thru that worst pain of my life Again! And I know about pain having been in a couple of bad auto accidents, but this eye thing was by far the worse, worse than broken ribs, worse than a broken nose, and I could go on but do not want to get too gory. I have read so much on this as I am sure all of you must have on the Medical Sites here in the US as well as England and India and even Croatia,( this is a worldwide problem, why so little understanding of it here and no real Cure without alot of complications?) But , I feel this site with real life experiences is by far the best research any one can get. No doctor guessing what will work, no drug company "pushing their product," etc. Just Real People telling the truth about real life experience. What ever happened to all the other folks who were on the old RCE thread, there was so much more people there. Just wondering. Thank You for this community, and I hope I can possibly help someone else with my experiences. I am so happy to have a part in this community. Any comments or suggestions greatly appreciated in advance.
[QUOTE=lisa glm;3060300]I've had my corneal erosions for over a year and a half. Very painful - blurry vision occurred almost every night. I had strommel puncture done twice - did not help. Finally June of 2006 I decided to get PRK. I needed glasses and I figured this would help my problem and fix my vision. Well I have to say - 1 year later I have not had 1 erosion. My vision is 20/30 and I feel great. My recovery time from the procedure was not that long and not painful at all. I've seen that some people were in a lot of pain, but I have to say I was not at all. I had on a bandage contact lens that was taken off after 5 days. I think that it was the best thing that I've ever done. I wasted a year trying all those other remedies that never worked for me and I was miserable. Hope this helps!

Lisa;)[/QUOTE]
Hello Lisa,

I am happy for you that the PRK has worked. To help me better can you tell me were your erosions from recent injuries, or age related underlying problems ( where the epithelial doesn't adhere well) ? Do you mind giving your approx. age as I know that sometimes that matters as to whether this works well or not. Also, did you have Dry Eyes syndrome, and did the PRK make it worse? Post OP Pain?? Just trying to figure out if I should go this route, because of bad reaction to other laser surgery which did not work . thanks, Judy
I am so glad to have found this support group. Most people I know have never heard about RCE, let alone can imagine the pain of it.

I first developed RCE about 7 years ago or so. I have several contributing factors: glaucoma, map dot fingerprint dystrophy (I think the doc also calls it basement membrane dystrophy), dry eye syndrome, and a current infection causing added swelling.

I often get the torturous, severe erosions that feel like someone is stabbed me in the eye with a toothpick. I don't recall ever having gone more than three months without that kind of severe erosion. I also get the smaller erosions that just feel like I have a few grains of sand in my eye, but I can deal with that without whining.

In early September I went through a bad bout of attacks nightly for about ten days. Before that I had been using just the Muro 128 ointment at night and Systane artificial tears during the day. The doc suggested I add back the Muro 128 drops four times a day and if I wake up during the night to use the bathroom, to reapply the ointment to hold me over until I wake up in the morning. I continued with some minor erosions and a few stabbing pain erosions for about two weeks, then was free of attacks for about ten days. Then I had stabbing attacks four days in a row. One of those severe erosions got infected and I awoke on a Sunday morning in excruciating pain and couldn't even stand light in the house with the shades drawn and wearing sunglasses. For the first few days I could see only light, then I gradually began to see huge letters on the eye chart. My vision is just about returned to normal--just a line or so away on the chart and perhaps when the contact lens bandage is removed I'll be able to read as well as before the last erosion and infection.

My opthalmologist is wonderful. Because I have so many other eye problems, I elected not to go to an emergency room, but called her answering service at 10AM on Sunday, Sept. 9th and she told me to meet her at her office at noon. The erosion was bad, as was the infection.

She put on a contact lens bandage, which I'm still wearing, and prescribed Hydrocodone for the pain, which may have slightly taken the edge off the pain, but the pain remained severe for a few days.

I was putting in Zymar antibiotic every hour for the first five days, then every two hours for about two weeks, and currently four times a day.
I was at first prescribed Acular for the swelling but that didn't work, so now I'm on Lotemax corticosteroid. The infection isn't healing because of the swelling, and the swelling has so many contributing factors because of other chronic eye problems. The Lotemax is working. I'm now being weaned off the steroid at one drop per day. And as of yesterday it's still infected, but at least the infection is under control and not spreading.

My whole day is pre-occupied with medicating my eyes. It's really annoying, but beats the heck out of being blind or having more painful erosions. I'm on eight different meds--three for the infected eye and five in the "good eye."

My meds are currently:

Infected eye:
--Zymar antibiotic four times a day
--Muro 128 drops four times a day
--Refresh Plus Tears as needed-- as frequently as hourly.

"Good" eye:
--Muro 128 drops four times a day
--Restasis for dry eye syndrome twice a day
--Systane drops artificial tears as needed--but I seem to need them only three times a day or so.
--Xalatan for glaucoma at bedtime. (Contra-indicated right now in the infected eye.)
--Muro 128 ointment at bedtime and every time I awaken for a bathroom trip, which is about 2-3 times a night.

I'm going to ask the doc if she thinks Genteal Gel may be worth a try and talk to her about B vitamin supplements which someone suggested to me, and ask her about increasing my omega 3 fish oil supplement which I currently take to help lower my triglycerides.

If I continue having these severe, painful erosions I may ask the doc about PTK. She is also a surgeon, so I'd want her to do it.

Evie, wishing you much success with your PTK on October 11. :)
Oh, I've felt my stomach sink reading these posts. My husband has just been through a miserable, months-long healing process with a corneal erosion. I felt awful for him, as he described the pain as being like someone stabbing him in the eye.

He wore a contact bandage for some time, then used various ointments and drops for months, slowly decreasing the frequency of use. He also took Doxycyline all that time.

His far vision detiorated to the point where he could hardly see at all. We thought it was a result of damage from the corneal erosion, but his latest eye exam revealed a cataract on that eye and he just had cataract surgery with a RESTOR lens implant.

My 'stomach sinking' feeling comes from reading that this condition can recur. I'm just sick at even thinking about it, absolutely hate the idea of my husband having to ever go through all that again. We had no idea, thought it was a one-time thing, like a cut that heals. The doctor never said a word about the possibility of it happening again.

Does this chance of recurrence fall under "possible" or "likely"? And my understanding is that this happens because the erosion site is basically unstable, even after healing? I know these are questions for his doctor, and believe me I will be asking them, but I'd like to hear from those who have actually been through it.

Thank you, everyone.
Hi everybody, I'm back from my PTK/PRK. I survived it! Healing is going fast, doctor is amazed...today the bandage lens will come off. I don't want to bump this thread so with my story so I'll post a new post in the coming days about my experience. I will say that I turned out to be in the minority of people who have pain with the treatment and yes, it hurt like heck! But I stuck it out and on my way to full recovery (and better vision)!

Evie
[QUOTE=Evie4;3260298]Hi everybody, I'm back from my PTK/PRK. I survived it! Healing is going fast, doctor is amazed...today the bandage lens will come off. I don't want to bump this thread so with my story so I'll post a new post in the coming days about my experience. I will say that I turned out to be in the minority of people who have pain with the treatment and yes, it hurt like heck! But I stuck it out and on my way to full recovery (and better vision)!

Evie[/QUOTE]

Great news, Evie. I've been thinking about you and am so heartened to hear that things are going well for you. I hope that you experience continued success.

I'm off to read your long post. Thanks for being so generous as to share your experience.
I am also new to the forum...have been clear of erosions now for almost 4 months after several months of hell. Here's my brief story... I somehow injured my eye while sleeping in April and a spent several months with worsening eye erosions. Tried artificial tears of varying degrees, Muro drops and ointment, room humidifier, etc. all with little or no effect...or so I thought...every few days I would wake up with another erosion and my focus would be shot for a day or two until it healed, only to happen again a few days later....I figured the Muro was not working, so I decided to stop using the ointment at night and the next morning awoke with an extremely painful tear on my cornea that sent me to the ER. What I learned is that the mix of things I was doing was somewhat helpful for me...Muro drops during the day, ointment at night and cool mist room humidifier next to the bed. I also had a small plug put into one of my tear ducts, because the damaged eye was dry. This was a simple painless procedure (took about 10 seconds and plugs come out just as quickly) and helped to lubricate the eye.

However, I suffered a severe erosion again, while I was out of town again a few weeks later, after I went most of the day without using my Muro drops....I went to the ER and the eye doctor put in a bandage contact lens. When I got home and saw my eye doctor, I told him I was planning to go on a family vacation to Las Vegas (DRY Climate) and Hawaii the following week...the bandage contact lens felt pretty good and I asked if I could keep it in, as I began to think that it protected my eye while I slept. He gave me a combination of Acular drops to treat pain and inflamation and an antibiotic drop, and told me that I could leave the lens in until I returned from vacation. He also said to use the Muro drops religiously. I have never worn contact lenses, but I found that after a day or two, I didn't feel the bandage lens at all and my eye came into focus with it, so it felt as if it was not there.

I had no problem for the 10 days I was away and I kept the lens in for total of 14 days with NO erosions. This was a major change of events for me, as I had been having them every couple of days. At that point, I wanted to keep the bandage lens in forever. When I returned from my vacation, my eye doctor removed the lens and the next morning I had a very slight erosion, however, I continued to use the Muro drops 3-4 times a day and ointment every night. I have been erosion free now for 4 months. I am convinced that the use of the lens for two weeks game my epithelium the jump start it needed to adhere to the eye. I also met with an eye specialist who suffered from recurring erosion himself a few years ago. He said one of the problems was that my expectations were not set up correctly. He said that it could take 6 to 9 months for the eye to heal correctly and he told me to continue the Muro routine (3-4 drops per day/ ointment at night) for at least six months. I have about two months left before I can begin tapering off the Muro.... Also, I still have the plug in the tear duct of the affected eye. My non-affected eye is often drier and I am considering placing a plug in that eye's tear duct...you cant see these plugs, unless you look very closely for them, but they are a pretty simple, cheap way to treat dry eye, without resorting to systemic drugs. I still also use artificial tears when I feel extra dry.

I wish you luck in treating your erosions...I know at times it seems like your helpless, but there are things that seem to work.... I was ready to undergo the lasik procedure, but the bandage lens and Muro routine did the trick for me...


[QUOTE=annammas62;3312143]dear friends,
I am new to this forum.I injured my cornea with my own finger nail 4 years ago.It healed without any problems in less than 48 hours as I was told by the ophthalmologist.I thought that was the end of it.Problems started one week later.I don't have to describe.You know all about it.Recurrent corneal erosions continued at varying intervals.I started using refresh liquigel at night and after waking up every time.I was free of symptoms for about one and a half years and i thought i was healed completely and stopped using the drops.Again it was ok for few more months. but i had 2 episodes recently when i had to sleep at an unfamiliar place.
I have found that to prevent erosions,some tricks are really more helpful.1.After putting the drops in the eye,I have learned to keep my eye tightly closed(not too tightly though) and keep it like that till I fall asleep.
2.On waking up ,do not open the eyes. Immediately start washing the eye with water gently.Repeatedly apply water to the eyes.After sometime we find the eye opening easily.After that it is ok.If i go back to sleep I put the drops again. I hope it helps someone.Prayers for all of you. Bye.[/QUOTE]
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.
[QUOTE=Freidi34;3603732]If you kindly could tell me what was the longest period you stayed with the Bandage contacts in.[/QUOTE]

The longest period I had my bandage lens in for was 1 month. They would not let me keep it in any longer than that, and would not change it at montly intervals either.

I also tried many techniques and managed to keep it completely under control by awakening with my eyes shut and massaging the eye lid, but this does not work when your alerter is going off at 2:00am and you have 4 minutes to get dressed and get to the fire station! This is why I decided to go along with the PTK and to be honest regretted it from the day I had it done. Maybe I will make a full recovery given time but I do not know. I will keep you all informed.

Maybe the sauna idea will work, I would be interested to hear about anyones findings or theories on this idea. To put it into perspective though, the hot house is around 750 farenheit, also there is air constantly blowing in your eyes from the to keep the screen of the face mask de-misted so maybe that has something to do with it? I was in the hot house for around 30 minutes a time 2-3 times a day, and the condition got better after the second day. I do not know if that helps anyone to find a solution? It would also be interesting to hear from any other firefighters to see if they have had similar findings.





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