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    Old 10-03-2007, 08:58 AM   #61
    Evie4
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    Re: Recurrent Corneal Erosion

    First, thanks Gentealgel and ebmd, itís great having you guys for support!

    Chuck, what timing! I had an erosion last night! Iím not wearing the nightly contact as the Dr. wants the cornea in itís natural shape for the vision correction. It was the 4th night without a contact, so my record still stands of only getting through 5 nights without (a contact) erosion. Iím really happy for you that things have been going so well.

    Iím very positive about the treatment. Heck, living with these erosions the past year makes this planned one sound like a piece of cake! Whatís one more MAJOR erosion? At least Iíll have painkillers if I need them. Iím so looking forward to my vision being restoredóthe actual correction to my vision is just icing on the cake! I wonít have to wear a contact AND glasses to get by anymore! Even if I have/had to just wear a contact during the day Iíd be happy!

    Iíll be writing my experiences next week (1 week to go!)

    Evie

     
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    Old 10-04-2007, 01:38 PM   #62
    carmel46
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    Hi--I'm new here

    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.

    Last edited by carmel46; 10-07-2007 at 12:31 PM.

     
    Old 10-07-2007, 12:49 PM   #63
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    Re: Recurrent Corneal Erosion

    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.

     
    Old 10-07-2007, 02:16 PM   #64
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    Re: Recurrent Corneal Erosion

    Ember, my heart goes out to you and your husband. As painful as mine is, I'd rather have RCE myself than to see my husband going through it. I know my husband feels so helpless when I'm going through a bad spell.

    Some people are lucky and get only the small erosions that just feel like a grain or more of sand is in their eye. And others, like your husband and I and many other members of this group get the excruciatingly painful stabbing attacks.

    I understand that whether or how often the erosions recur depends on the underlying causes of the RCE of each individual and how well those causes can be kept under control. It's a very individual thing. For instance, my causes are glaucoma and basement membrane dystrophy (map dot fingerprint dystrophy) both of which cause swelling of the cornea and then as you know, the friction of rapid eye movement during dreaming can cause an an erosion. Occasionally my glaucoma meds quit working and have to be changed. When I get warning signs that I'm "due for" another erosion, such as a grainy feeling or excessive dryness, or "sticking" of the eyelid in the morning, I increase my sodium chloride dosages per day and increase the use of lubricants. Especially helpful to many is a lubricant ointment at night.

    I recently started having a 1/2 to 1 second stinging sensations occasionally during the day. My doc said that's my eyes telling me they need more lubricant drops during the day and to drink more water.

    There's a really good article about RCE at [url]http://www.emedicine.com/oph/topic113.htm[/url]

    Some hope for your husband: I do know a lady who has RCE who hasn't had an erosion for the past five years. But she continues her preventive sodium chloride drops, lubricants, and drinks lots of water, avoids dry room conditions. Some people find that a sleep mask helps if they've been told they sleep with their eyes partially open. I haven't tried that yet.

    Best wishes!

    Last edited by carmel46; 10-07-2007 at 02:20 PM.

     
    Old 10-08-2007, 01:38 AM   #65
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    Afraid to go to sleep

    Well, here I am at 3:33AM, afraid to go to sleep because of the grainy feeling in the eye in which I still have an infected corneal abrasion, which started with my most recent stabbing pain RCE attack a freakin' month ago.

    I can feel it even with my eyes closed. The only meds I'm allowed to use right now in the infected eye are the antibiotic four times a day, a corticosteroid once a day, and Refresh Plus Tears. I can use the Refresh Plus Tears as needed--as often as hourly. But it's not alleviating the grainy feeling.

    I have an appointment this afternoon and the first question I'll ask will be about what else I can do at this hour of the morning if I've already used my steroid allotment for the evening.

    I'm sooooooooo tired of this infection and not being able to sleep sometimes out of fear of an attack. My second question will be whether we can try a different antibiotic.

    No reply necessary--I'm just venting.

    Last edited by carmel46; 10-08-2007 at 01:45 AM.

     
    Old 10-11-2007, 02:05 AM   #66
    mike1961
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by carmel46 View Post
    I increase my sodium chloride dosages per day and increase the use of lubricants. Especially helpful to many is a lubricant ointment at night.

    I recently started having a 1/2 to 1 second stinging sensations occasionally during the day. My doc said that's my eyes telling me they need more lubricant drops during the day and to drink more water.
    (long but informative - I have the syndrome but I have been erosion free for over 3 years now).

    Hello - let me start by saying I don't agree with what your doctor says and I hope he said more than that. To say - "your eyes telling you they need more lubricant..." doesn't really say anything. Okay, the real reason why you are feeling that "stinging sensation" during the day is because your epithelium is "thinned out." In other words, we all think we get erosions when we feel great pain in the morning which is true and that is our signal. But, what about when we wake up and there is no pain at all (did we have an erosion)? We may have had such a very very minor one that there was no pain at all but the epithelium may have slightly eroded when we awakened and started blinking our eyes in the morning. As days pass, the epithelium continues to thin until one day there is excessive dryness and wham - an erosion we really feel.

    I have not had an erosion in over 3 years due to two major things I do. First, NEVER sleep on your back or roll onto your back while sleeping. You have to really commit to this. Second, when awakening in the morning keep your eyes closed, still and as relaxed as possible, roll onto your back and while looking at the ceiling (eyes closed) apply artificial tears with the tip of the bottle gently touching the sclera of the eye by the tip of your nose, generously squeeze the drops in your eye and keep the eyes closed and relaxed for another 15 seconds and then gently open your eyes. This must be done every morning and assume there is no way to know if your eyes are going to stick or not since you don't want to move your eyelid until you have applied the drops.

    Last - if you do feel that "sticky/painful" sensation during the day it's a good idea to apply an eye ointment. Personally I prefer Muro 128 but some don't like it and prefer Refresh PM ointment or some other ointment. It may also help to apply the ointment at night as well. ALWAYS warm the ointment before applying it so that it is almost more like a liquidy gel than a solid when applying it to the eye. You can either warm the tube under warm water or just put it against your body for 1-2 minutes (such as under your armpit or rub your hands briskly and put it between your hands).

    I still maintain that it is not possible to get an erosion when awakening if you keep your eyes relaxed and still and apply artificial tears. It takes practice to master but if you are committed it can be done.

    Last - if you do get an erosion - DO NOT blink your eyes. First, relax (as best you can). Second, lie straight on your back (exactly what you would not do when sleeping). Next, while lying on your back, keep your eyes closed and try to relax them without squeezing them shut or opening them. Be sure to generously apply artificial tears as soon as possible and you may want to apply them several times to try and avoid pain. But, most important is to keep your eyes closed for 15 minutes and just RELAX. The reasons for this are obvious - if you get an erosion you want to keep it as MINOR as possible. If you blink and panic, your potential minor erosion will become a major erosions. What has happened, is your eyelid has pulled some cells off the epithelium (like a gouge) and your eyes are dry. Every time you blink, you will be disturbing and sloughing off more epithelial cells leading to a more major erosion. It's like pulling a bandaid off a sore and then rubbing the sore with your hands so do not blink but just keep your eyes closed. 15 minutes is good because it allows some time for the surrounding epithelial cells to "fill in the gap" which is exactly what is really going on. The epithelium will be thinner but you will have lost fewer epithelial cells. Imagine a milk shake that completely fills a glass to the top and you scoop out the center with a thimble or small spoon. Now, the surrounding areas will eventually "fill in the gap" However, if you start wiping your hand across the glass back and forth (to simulate blinking) after removing the center with a thimble then even more will be lost and eventually the surface will become smooth again but there will be a lot less milkshake and it could be months before it gets to the top again (considering the milkshake as an analogy for epithelial cells).

    That's really how it works - the surrounding cells fill in the gap. Many of us sleep with our eyes slightly open and do not even know it. This seriously drys out the eyes which again validates that we need to keep our eyes as still as possible and add drops in the morning and stay off our backs when asleep. Sleeping with our eyes ever so slightly open also explains why 95% of all erosions are in the 6 oclock position on the cornea.

    I hope this advice helps some out there. If not, we still have PTK and Dehydrex Trial drops (Dehydrex may be good solution without surgery).

    Always the best,
    Mike

     
    Old 10-11-2007, 02:19 AM   #67
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    Re: Afraid to go to sleep

    Quote:
    Originally Posted by carmel46 View Post
    The only meds I'm allowed to use right now in the infected eye are the antibiotic four times a day, a corticosteroid once a day, and Refresh Plus Tears.
    I think you said you have glaucoma. Regardless of which eye if you have a family history of this (since it is often inherited) I would be very cautious of steroids since they will increase eye pressure. Most docs don't like to prescribe them for more than two weeks; in fact most don't like to prescribe them at all and are very cautious so I can't even imagine how much caution one should use when glaucoma is another component. You can always get a second opinion or scour the internet regarding glaucoma and steroids. I just did a quick scour on the net and read that corticosteroids when used to treat eye inflammations or problems can trigger glaucoma in some people who don't even have glaucoma (like it sets it off or something). It's no wonder that most doctors are very cautious.

    Last - I had the puff test done recently (yea - even with RCES I felt confident that I would be okay so long as I follow what I've learned about adding drops before opening my eyes). My pressure was 9 (both eyes). When I asked him how it could be so low (as it was last time also) he asked if I exercised and I said all the time. As it turns out, exercise doesn't only lower blood pressure but lowers eye pressure as well.

    Best to you,
    Mike

    Last edited by mike1961; 10-11-2007 at 02:28 AM.

     
    Old 10-11-2007, 09:25 AM   #68
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    To Evie: Best Wishes!

    This message is for Evie. Evie, I know that you said that you said that you were planning on surgery today to treat your rce's. I hope that all goes well and that you find long-term relief!

     
    Old 10-11-2007, 11:23 AM   #69
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    Re: Afraid to go to sleep

    Dear Mike,

    I am new in this board. I have been readig your posts and I am quite impress and happy because I have learnt a lot from you. A year and a half ago my baby daughter scratched my cornea (fingernail) and the initial corneal abrasion became RCE attacks, unfortunately. I nver knew about this condition until that incident happened. What I write here is nothing new for no one. We are all in the same boat. Except for the fact that each one reacts in a different way. After suffering a year plus (muro ointment at night and muro drops during the day) I decided to let doctor make a debridement. I stayed with the BCL for 4 weeks. On e week after I took it off I had an erosion where I could not open my eyes for one hour (that day I took a nap in the middle of the day and woke up with the pain). Since that day I have been trying to follow your advice (not to sleep on my back, not to roll on my back and put the tears right away in the morning before opening my eye. So far, I have no gotten one erosion. Since the debridement I stopped the muor and I am applying Genteal gel at nighth and genteal drops (preservative free) during the day. Some days I don't feel nothing during the day and other days I have the grainy or sandy ffeling the whole day. When this will be over???

    Regards

     
    Old 10-11-2007, 05:34 PM   #70
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    Re: Afraid to go to sleep

    Quote:
    Originally Posted by Freidi34 View Post
    Some days I don't feel nothing during the day and other days I have the grainy or sandy ffeling the whole day. When this will be over???
    Regards
    Freida - I'm glad to hear that you have basically had no erosions since mastering this technique. I think what happens is those like myself who master it and find it really works get so comfortable with it and it becomes almost second nature that we sometimes get a little too lazy and once in a while sleep on our backs with our head tilted to one side or we sometimes don't apply the drops each morning even though we should. When that happens if our epithelium thins a little you might get that "grainy feeling." I find that I'm more likely to get that slight grainy feeling if I get less than 3 hours of sleep (I have not figured out why this is as of yet but I have a good solution that works well for me when this occurs).

    What I have found that REALLY works when you have that grainy feeling in the morning after applying drops is to get up and warm ointment (such as Muro or Refresh PM or another ointment) and then apply it and just lay on your back for about 10 minutes with your eyes closed and relaxed (but don't fall back asleep and be sure to warm the ointment). Ointment lasts about 4 hours so it should take care of the "grainy" feeling and keep the eyelid from sloughing off too many cells as you blink during the day. If it starts to happen "too often" then consider using a little ointment at night (be sure to always warm it before applying it).

    As far as when it will be over? Well, we know that PTK has about a 90% success rate the first time and 99% when done twice. Dehydrex drops look promising. A very small study of doxycycline and a steroid looked promising also and may work wonders for some but I've yet to try it and have little time right now in my life since I have my RCES under my full control. But, as you know RCES is a "syndrome" so like diabetes, asthma or other things, for some it's more of something we manage. For me, I've been doing so well with it I'm just not ready yet at this time in my life for PTK. I'm extremely conservative and with these simple techniques I've discovered it's very manageable. If you do at some point go for the PTK just remember to clear it with the insurance that it's PTK and not PRK (which PRK being Lasik is not covered as PTK might be depending on your insurance plan).

    Glad to hear things are much better over the last 18 months for you.

    Mike

     
    Old 10-11-2007, 05:47 PM   #71
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    Re: Afraid to go to sleep

    Getting creative here - I should mention a few months back I took a cruise and I can't remember how but I did not have my artificial tears with me the first night but it was easy to get some the next day. Also, they did not have any shops open on the cruise line that evening. So, I tested something out that evening before going to bed. I tried putting a little water in a glass. Then while laying on my back I took my finger and stuck it in the water and then let some drops fall from my finger at the corner of my nose between my eye. Then I gently rubbed the outside corner of my eye by my nose to try and gently work the water drops in my eye. I tested all of this while I was awake to see if I could do the same thing the following morning. I figured anything like this would be better than nothing at all. Well, it seemed to have worked but I don't think my eyes were that dry the following morning anyways but I thought I would throw that to the forum as a tip should you ever find yourself without artificial tears. One could say the water might not be clean and stuff but personally I would risk that over an erosion any day of the week.

    Mike

     
    Old 10-12-2007, 02:57 AM   #72
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    Re: Recurrent Corneal Erosion

    For all of you!!
    Try GOGI juice, pure Himalayn Gogi juice does WONDERS for the eyes.. not a cheap brand you get at the grocery store... Pick it up from Costco or from a distributor on the internet.. GREAT healer and stimulates cellular growth and replacement, and will assist wellness in other areas of your life as well. If it did not work or have any healing properties, it would not be sold . Another great product is VIBE from ENiva, look it up on a search engine.. vision testamonials... and you will see how it has enhanced other people's vision and eye health. Both of these products are jammed packed with antioxidants in amounts hard to get in our diets. Cleanses body systems, boosts the effectiveness of the immune system and cellular replication , body functions. Pick up some preventative measures for cancers at the same time by drinking this daily. Only have to take 1 to 2 capfuls /day for health benefits .

    I use to sleep in my extended wear contacts and wake up with gooing lenses and eyes, unless I take these products.. with the Gogi juice i actually felt something going on with my eyes the first few days , then my vision seemed sharper. Great for cellular replication...which would be most helpful for healing and tissue repair.

    Last edited by chery0205; 10-12-2007 at 03:05 AM. Reason: used a search engine name

     
    Old 10-12-2007, 02:28 PM   #73
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    Re: Afraid to go to sleep

    If you do at some point go for the PTK just remember to clear it with the insurance that it's PTK and not PRK (which PRK being Lasik is not covered as PTK might be depending on your insurance plan).

    Glad to hear things are much better over the last 18 months for you.

    Mike[/QUOTE]

    Last edited by Freidi34; 10-12-2007 at 02:30 PM.

     
    Old 10-12-2007, 02:40 PM   #74
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    Re: Recurrent Corneal Erosion

    Dear Mike,

    Thank you for the update. After the debridement my doctor mention that if it does not get better he would not do any other procedure (stromal puncture. or a second debridement). He told me he would go straight to PTK. The only comment he made is that if he does the PTK I will be more nearsighted. I personally did not understand since I thought PTK does not alter the vision. But on the other hand it does affect the curvature of the cornea so it does or not affect? My vision in my affected eye is almost perfect. I have a very low number of myopia. (nearsightedness) Sorry from my english mistakes since I am not American. Anyways, he did say that my vision will be affected.

    Waiting for your reply

    Have a good weekend

     
    Old 10-12-2007, 04:10 PM   #75
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by Freidi34 View Post
    The only comment he made is that if he does the PTK I will be more nearsighted. I personally did not understand since I thought PTK does not alter the vision.
    Have a good weekend
    PTK should only improve vision. It does not do correction but its the polishing of the cornea that may get you one or two lines better on the vision chart. However, it's also the same machine that is capable of doing correction and I think another member is doing both. But, you have to be very careful should you choose do do Lasik in addition to PTK because I believe either one or two nerves are cut (and take about 6 months to heal back again). These nerves are responsible for tear production (thus the reason why some complain about dry eyes after Lasik for a while). The drying can lead to discomfort and a possible RCES (which also explains why some who get Lasik get RCES afterwards). I would carefully research this. Obviously if you have learned to apply drops before moving your eyelids upon awakening, you have a huge advantage over others.

    Personally, if my doc said PTK causes myopia to worsen I would get a second opinion. You want someone who has done a lot of these and knows how to use the laser, etc. The newer machines make only one cut (I think) rather than two which really helps in not having the dry eye problem (which otherwise takes around 6 months to heal over).

    Mike

     
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