Greetings...

[allie0426]

Hi Everyone,

First, let me say that I am new to RCE..about 5 months now and I have been scouring forums looking for similarities to my symptoms. I have had 2 major episodes...by major, I mean ongoing until i seek medical help, at which time they have to "cut away the loose flaps of skin" causing the most excruciating pain I've ever felt in my life. Apparently, during one of these occurrences, every time my eye moves, or i blink, the flaps are tugged on, pulling on exposed nerve endings. The pain is the kind that can drive a person insane...and I am not being dramatic. I have a very high tolerance for pain, and this kind of pain, well, I would do pretty much anything to never feel it again.

So, since it began, I've had 2 debridements and stromal puncture (2 days ago, after going to a well known EYE infirmary on a sunday in NYC, the opthalmologist on call left the flaps in my eye, told me to take advil and see my opthalmologist the next day). The contact lens bandage just came out today from the last episode and the puncturing, and my dr said it was "95%" healed. I have dry, scratchy, foreign body sensation and am absolutely petrified to go to sleep.

She also told me to begin using Muro128, but not until friday, when the eye should be totally healed. What doea that mean for tonight and tomorrow night? The thought of an erosion totally makes me nearly cry. There are so many choices in drops, creams, ointments...I admit to being totally overwhelmed...

Anyway, I will be lurking, reading and hopefully finding some help here...

Thanks for this board.

Allie

[Lucy]

Hi Allie-
Your doctor says not to use Muro until Friday? You're asking what to do until then. At night especially, I'd use preservative free drops. I would put some in during the night too for the next couple of nights at least. You need to keep the eye from sticking to he eyelid by being too dry.

I think the doc would have told you that, but that's how I'd do it.
Lucy

[allie0426]

HI,

Thanks for the reply...she said to continue on the antibiotic drops until they were gone and yes, to use preservative free drops. Problem is, I have been doing that all along, and still getting the erosions. The last 2 have been utterly intolerable and I would gladly do anything never to go to "that place" again.

Allie

[Rojzen]

postoperative analgesia; duration of bandage lens; pls investigate DWELLE

Welcome Allie0426. . .I am so glad you found us. . .

First, I want to ask whether topical anesthetic was used during your procedures (puncture and debridement, in particular). . .When I had a debridement done at Bascom Palmer some years ago, a powerful, and completely effective topical anesthetic completely eliminated sensation during the procedure. It sounds to me like you may not have had the benefit of this, which would be horrific. . .

The pain level you describe is right on. . .Untreated corneal trauma produces unspeakable pain. . .After my debridement, Advil would have been worthless.. .I am therefore grateful that my doctor handed me a few Percocet (narcotic painkiller) to use over the initial 24-hour post-op period. . .I believe this should be standard practice. . .

After my debridement, my doctor (at Bascom Palmer) kept my bandage lens on for a month, even though healing was nearly complete after 48 hours. . .On this, I don't know standard practice, but I believe my cornea benefitted by extended protection post-op...

Do these comparisons help at all?

In any case, you are going to feel much, much better soon, and with the right therapy, you may well be able to get those RCEs under very good control. . .There is another recent thread, here, that addresses Muro in comparison to the products developed by Dr. Frank Holly, one of our heros and champions here at DEZ. . .Dr. Holly's Dwelle eyedrops have been known to help RCE patients avoid recurrences. . .Please see the DEZ section on Dr. Holly's drops, and use keyword searches to discover all the discussions here on RCE. . .You'll find that many of our members are outright scholars on the subject. . .

Welcome again. . .Hang in there, and get ready to start educating your doctors with all you are going to find here. . .

[liz56]

Hi, Allie.

I'm so sorry to hear about this happening to you. Lucy and Rojzen are giving good advice. To theirs, I will add that it helped me, when my rce's were at their worst, to sleep in a reclining chair or to keep my head stable. This allowed me to awaken without opening my eyes. I also applied Genteal Gel, setting the alarm for ever two hours during the night. If you have a close call, that is, you wake up, your eyes stick, and they feel like they are burning and if you move, you will have an ersoion, then have some regular, bland eye drops or water nearby (I'd use preservative free drops in your case if you are on antibiotic drops and prone to infection right now) and apply the drops to your closed eye, right in the corner by your nose. Cindy, a member here, mentioned this tip, and I had a frightening and stubborn sticking incident yesterday morning, but I just tried to stay calm and kept applying drops. My eye burned, but it did not have an erosion. It slid open.

Good luck, and keep us posted on how you are doing!

--Liz

[allie0426]

Rozjen and Liz,

Thanks so much for the encouragement. Yes, the dr did apply topical anasthetic during the actual procedures so it didn't hurt, and did apply a contact bandage after each(I have seen 4 different doctors, 2 in emergency rooms b/c the erosions occurred on weekends..1 of them gave me a few percocet, the other said 'take advil, call your dr tomorrow"), but never for more than 3 days. I am currently using Vigamox and when they are gone am suppose to start on Muro ointment at bedtime and preservative free drops as needed. I have epithelial cell dystrophy, have the condition in both eyes(but have only had erosions in the right eye).

Since this has started, I have missed several days from work (I am an engineer with a telecom company and sit in front of a computer all day),as when the erosion has required medical treatment, I am out of work for 3-4 days minimum. My vision is affected during the erosions, so even if I wanted to (which I cannot imagine given the pain), there is no way I could drive. How do people manage this? Is it eligible for disability benefits? I am completely worried about losing my job, even though i have been with this company for years.

There is so much more to worry about with this condition then just the erosions and the pain, but honestly, in the middle of one, I really don't even know how anyone thinks of anything else...it is the kind of pain that can send people mad. I literally am afraid to go to sleep.

Anyway, enough of my bellyaching...it seems as though everyone here has many of the same issues. Thanks for the advice and I will look into the Dwelle products as suggested.

Thank you all so much.

Allie

[Rojzen]

do dystrophies respond to moister micro-environments?

Liz56 and allie0426, you are so much in my thoughts today. . .

I've been wondering, in connection with dystrophies and erosions, whether it has been found that moisture preservation close to the eye makes any difference. I'm always touting moisture chamber glasses and other eyewear protection, because one of my favorite doctors was once thoughtful enough to measure my tear break-up time (TBUT) after I wore the glasses for a while, and then after I went without them for a while. He concluded that wearing the chambers actually increased my TBUT significantly, and for a while, even AFTER I took the glasses off. . And so it's safe to conclude that while one wears such eyewear, TBUT is potentially being extended the whole time. . .I've always assumed that this, in fact, is the key desired effect of moisture chambers. .

Anyway, does TBUT affect epithelial integrity? And which way do things go? Is a longer TBUT good or bad for keeping the corneas anchored down and solid? If so, have you tried eyewear yet?

[Rebecca Petris]

I've been wondering, in connection with dystrophies and erosions, whether it has been found that moisture preservation close to the eye makes any difference.

I think that if/when the recent orphan Dehydrex study particulars get into the public domain it should have some bearing on this. From what I heard it was very interesting because they studied the effect of the high oncotic pressure drops on RCEs exclusively in the absence of dry eye disease, meaning I presume as a result of injury or dystrophy not clouded by any other surface disease factors.

Aak, this reminds me, I need to get Dr. Holly's forum finished up - if anyone can shed more light he can.

[Rojzen]

this will be fascinating

Rebecca - -Thank you so much for understanding EXACTLY what I was pondering. . .Yes, when dystrophies are unrelated to dry eye, what, in the world, might the relevance be of micro-environment enhancement. . .

I had no idea about that Dehydrex study. . .Bless you, bless you, for being so on top of that and everything else. . .and I feel a special gratitude, too, to all the dystrophy/erosion patients who have graced these postings. . .The science on all the ocular surface disorders so badly needs to be cross-pollinated. . .

I will watch the weekly bulletin for developments, and peruse the clinical trial pages more often, here, on all this. . .

Thank you, as well, for the up-and-coming Dr. Holly dialogues. . .

We are SO where it's at, don't you think?!

[liz56]

Thanks, Rebecca, for your information.

Thanks to you, too, Rojzen, for your tenacious pursuit of things that work and why!

On the Dehydrex study, Rebecca posted the following on the Dry Eye Digest Blog a while ago:

http://dryeyedigest.blogspot.com/200...-dehydrex.html

allie0426, I hope that you can get your erosions under control. Read the posts on this board. This whole site has helped me a lot, I read and re-read the product descriptions, because there are so many ways to use them. The drops have been a real lifesaver. I feel much more normal than I did six months ago when it all started for me, and that is directly a result of my putting to use many of tips I have gotten here. (The moral support is nice, too.)

[allie0426]

Thank you

To Everyone,

This is all so new to me...I will admit to just being pretty confused. Since this has all started (just a few months ago) I have been to 4 drs (2 in emergency situations..the first time it happened to me it was a major. I woke up in agonizing pain and unable to see through my right eye. I thought I was either dying from a tumor or someone had broken into my apartment and stabbed me in the eye!) and I found out myself that this was RCE and presented the research I had done to the dr. YOu would think with such a prevalent problem that opthalmologists would know more about it. Seems crazy to me that I am paying them all kinds of money and then have to tell them how to do their job...I sure couldn't get away with that in my job!

Anyway, I am in the very early stages...I have been told bits and pieces from each of the drs i have seen and am seemingly putting together pieces of a puzzle. I can say that I did not have any of the dry eye symptoms people talk about here prior to my first erosion...I just woke up in agony one day and have been going through this every since. I seem to have the dry eye symptoms now in both eyes...scratchy, sandy, foreign body sensation, etc. I supposed it doesnt help that I am in front of a computer all day, but just seems odd that all of the sudden, after the erosions began, I am displaying dry eye symptoms as well.

This forum is an absolute godsend, especially if you happen to have a dr that doesn't think he/she knows everything and is willing to look at the research..will keep everyone posted as I find out the answers, or at least gain more questions, lol.

Hope everyone woke up today feeling good...wasn't so bad for me.

Allie