New guy, recent RCE and learning more every day!

[cleareyed]

Hello all! This forum and the main site are awesome. It has helped me in my understanding of what I now recover from and also to remain optimistic that I am not alone. And now, I am no longer a lurker To Rebecca, thank you for realizing the power of the Internet in your creation and continued work this site requires!

I am 32 and have only had corneal erosions for about 8 months, only in my left eye. I am a proud husband and new daddy to our daughter Bridget. My username is the title of a great song by Glen Phillips, who sings/sang in the band Toad the Wet Sprocket. I work as a systems engineer under flourescent lights, in front of computer displays, and in a sealed off dry air office all day. I have worn glasses since I was 7, and tried contacts about five years ago but they simply fell out, my eyes were so dry no drops seemed to help keep them in. I knew I had dry eyes but it never required any maintenance and never caused the pain I would later encounter.

My erosion episodes are somewhat manageable, but when one hits, it is always worse than before. Always morning occurences. After 6 weeks of none, I had one last week that ripped what seemed like the whole surface from my eye. I had profuse watering of the eye, light sensivity that forced me to clinch my eyes all day and driving became dangerous. My doc scraped the 'dead' cell tissue off my eye and placed a lens bandage on for two days. Now, 5 days later, I feel great but apprehensive for the 'next one.'

It has been 4 months with this specialist and he wants to see 6 months of me before providing any real opinion or suggestions. I use Thera tears preservative-free drops all day, genteal gel at bedtime, Restasis 2x daily, Azasite 2x daily, and now after this episode, Zymar 2x daily. He also gave me Acular for light sensitivity as it is an anti-inflammatory.

I look forward to learning from all of you and offering and receiving support. I am intrigued by some of the meds you all use which I can't seem to find locally such as Dwelle and Dr. Holly's products. I also hope to gauge real world experience with the more expensive prevalant prescriptions such as Restasis, as I think it may be simply a cash grab for Allergan that does little for me. I read it is a long-term benefit but who knows.

[Guest]

Welcome to the forum and you're right it is a great place to discuss your eye problems, raise questions and hopefully seek a solution that will help you deal with this the best way possible.

I have been a sufferer or RCE's since my laser surgery nearly 3 years ago. whilst I use very little product during the day, I always use either Viscotears (PF gel) or Clinitas Ultra 3 (as Dwelle is not readily available in the UK).

I have tried a number of things to get my erosions under control but I think the thing that made the most significant difference was using Viscotears PF and then taping my eyes closed (I even appeared in a newspaper article in this hideous state just to raise the awareness on the implication of Laser Vision Correction LVC or as I like to refer to it as LVCLC - Laser Vision Correction Longterm Complications).

Again, welcome you would gain a lot from having a look at some of the "sticky" posts in the various forums and also using the search feature to search the various forums.

Regards

Ian

[liz56]

Hi, Cleareyed.

I'm sorry to hear about your erosions. I'm also sorry to hear that you are so young and having these.

Has your doctor said anything about epithelial basement membrane dystrophy (or its other names: Cogan's dystrophy, anterior basement membrane dystrophy, or "map-dot-fingerprint dystrophy")? I ask, because it could mean the difference between getting over this cycle of erosions, such as those caused by an injury or chemical contact, and planning a long-term management program.

I've had RCE's for over a year, though my last one was five months ago. (I did wake up last week with a little moisture around my eye and a really raw feeling, but the other tell-tale signs of an erosion were absent, most notably blurred / reduced vision, a foreign-object sensation, and photophobia throughout the day.) And, I am on a program of Dr. Holly's drops, Dwelle, in particular, throughout the day and before bedtime. I also use Genteal Gel (severe formula in the tube, not bottle) for bedtime. I suspect that my eye with erosions cannot fully close, so I wear Tranquileyes goggles at night, too. All of this sounds like a lot, but compared to the routine that I was doing this time last year, it is far reduced!

So, Dwelle has helped me a lot, though it did not help instantaneously. I had to use it for months before it helped. I am also now off of Restasis, which, I think, did help me. However, I don't feel that I need it any longer.

You will not be able to find Dwelle locally at any stores, likely. It is available here at the Dry Eye Shop, and Rebecca posted a great description and explanation regarding the drop on the product page at the Shop.

I hope that you can put these RCE's behind you soon!

--Liz

[Rebecca Petris]

Welcome cleareyed!

My erosion episodes are somewhat manageable, but when one hits, it is always worse than before. Always morning occurences. After 6 weeks of none, I had one last week that ripped what seemed like the whole surface from my eye. I had profuse watering of the eye, light sensivity that forced me to clinch my eyes all day and driving became dangerous. My doc scraped the 'dead' cell tissue off my eye and placed a lens bandage on for two days. Now, 5 days later, I feel great but apprehensive for the 'next one.'

YOWCH! Sounds like most of your epithelium sloughed off or something? (shudder)

I am a little concerned at your description because it sounds like the RCEs are still on the downward spiral rather than recovering. I would definitely follow Liz56's advice... this is very important to check into. A pattern I've seen/heard many times is people with RCEs being treated as though they had severe but classic dry eye - and, fair enough, the two conditions may be concurrent - but RCEs and poorly adhering epi also require different treatment in order to get them under control.

We've got a lot of RCE veterans here like Ian (Prattstar) and Liz and McGoldi. Check out their blogs if you haven't already. Lots of great tips and experiences to glean from.

[cleareyed]

Thanks for the warm welcome !

Hi Pratt, I considered corrective surgery 5 years ago but they would not guarantee perfect vision or elimination of glasses. I did not know about the complications of dry eye and am now relieved I avoided the surgery for what seemed at the time as a purely qualitative decision. Per your username, do you happen to know who Dirk and Lerxst are? Those three are one of my all time favorite bands. If not, I still dig the name.

Hi Liz, thanks for the tip. I did some reading but By EBMD do you mean the cornea or a layer of the cornea might be loose or not fully attached to the others? My Doc has mentioned this briefly but has not committed one way or the other yet. The good news is that I think this last episode and visit kinda scared them in to noticing something beyond dry eye. And I saw two docs over the 2 day recovery period and the 2nd one seemed excited moreso than normal at looking at eye irregularities! On the one hand it's nice he may have noticed something cool but I don't necessarily want to be the next case study for his journal either! It really is a great practice with several older docs. But I am also praying they are doing their due diligence with my best interests in mind and they get me on the right track, the first time, soon. Is it odd that I am the youngest patient each time I go in...by several decades?

Hi Rebecca, great site (and effort) in turning your experience in to a haven of knowledge and support, bringing folks together! I will pursue this epi stuff further now that I understand the two potentially separate issues better!

[liz56]

Ebmd

Hi, Cleareyed.

EBMD is a cornea dystrophy in which the outermost (anterior) segment of the cornea does not fully "anchor" into the interim "basement membrane" between it and the stroma, or the large bubble part of the cornea. In my case, it is an old injury that never healed right because of this "dystrophy." However, it can happen even when there is not a prior injury.

Dr. Holly, who can be kind of technical at times, explains microcystic edema, the condition that causes people with EBMD to have RCE's.

There is also a forum below for us RCE / EBMD sufferers, so that is a good place to go.

A trained corneal specialist can usually spot the problem and get you onto a good course of treatment. I had to go to a second one before I got the treatment that finally worked for me, but it was worth the hassle and expense. I'm not up for any surgical alternatives to this problem.

Keep us posted on how you are doing.

--Liz

[Mcgoldilocks]

Hello cleareyed! You certainly seem chipper for one with such a nasty problem - well done!

What an exotic cocktail of eye drops you have, it must be a real pain keeping track of everything. Oh the panic when you realise when you have left the house and forgotten just one of them! I have been there.

I wrote a post a while ago with everything I could think of that I do to help with my RCE's, you can read it here for some more tips:

http://www.dryeyezone.com/talk/blog.php?b=71

[cleareyed]

Haha, chipper. Never been called that before. I like it !

Well, I look at it this way, it is what it is. I can work with it and move forward or let it get the best of me and not go anywhere. But For me, I can't let my maintenance during the day subside, which is easy when things are going well and you regain some normalcy in your daily life.

I like your tip list. Two things I especially related to:

"I have been guilty in the past of not stressing exactly how much pain I’m in. Tell them honestly that it’s unbearable. Try to keep your temper as 15 people ask you the same questions and don’t listen to your answers properly."

When I went in the past two times to my Ophthalmologist for unscheduled visits due to erosions, I was not the nice Matthew I normally feel like. They all try to be 'chipper' around the office but I don't want chipper at that time, I want magic and I want action now ! Plus, I'd rather not tell the same story to all the shocked assistants while I wait the prerequisite waiting period before seeing the doc. ;-) I wonder how many vision careerists have actually had bad eye experiences? Or at least some training on how to not act so shocked when I explain my terror. It's almost anti-logical, but I'd rather have someone who seems to understand or at least knows the urgency of the pain and the all-encompassing nature of its presence.

"Oh, and VERY IMPORTANTLY remember to give yourself a big treat once you are better. Some chocolate. A book. A nice meal. You really do deserve it!"

My first morning after things clamed down after my big one last week, was like heaven. Actually I think I registered here that day or the next... that must have been the cause of the joy.

[cleareyed]

Minor update

Was fine/good for about 2 weeks after my worst erosion to date on 8/19, which prompted me to join here. My doc performed a keratectomy, then two days with lens bandage and Zymar, and then off on my merry way. I went forcefully back to my disciplined daily drop ritual as this erosion scared me straight about the Restasis, Theratears, and genteal gel needs even if I 'feel' good.

Well just 17 days later, another bad erosion episode woke me up at 2:30am on 9/9. Actually a big storm was outside which probably made my eyes flutter and open before I woke, which probably caused the tear to the epithelium. When I woke I was immediately in immense stinging squinted clenching pain, in the dark. I even stubbed my toe on the bed leg which I scolded my wife for, in the moment. I have since apologized for that for which she forgave me

This one was treated the same, albeit 48 hours later because my main doc was not available on the day this occurred. 48 hours without a lens bandage. 48 hours of pain and symptoms.

So my current investigation lies around the personal use of lens bandages at the onset of an erosion to remain functional, while subsiding the painful symptoms until I can safely get to the Doctor's office. Have any of you considered or tried this? I also have thought about this for night time use. To prevent the dryness, leading to the erosion episode, from occurring?

On the official front, the Doc has mentioned EBMD as a most likely cause, but still feels this started with an initial injury which I flatly deny. My mother has mentioned she has/has had similar minor dryness episodes and blames herself and her genes for my current symptoms, which makes it really cumbersome to try and discuss with her day to day scenarios. But a final solution or long term fix is still elusive and might always be. That is the 'not good' I still hope to correct. I must do the daily drops, but something like Restasis still seems like a lot of drops (and expensive) for an only possible long-term change in my eye's biology; whereas an immediate treament for an erosion episode really doesn't exist until you find your way to the second waiting room of the Ophthalmologist's office. And my erosion have ramped up since this all appeared 9 months ago, rather than ramping down.

Today is a splendid day, first day with the lens bandage removed, but I am anxious for the next erosion. Not feeling depressed but just apprehensive for the next one. Thanks for reading !

[liz56]

Hi, cleareyed.

Well, I am glad to hear that the BCL is working for you. I know of people, having read about them on line, who use the BCL as something that they use after an erosion or for a nighttime preventative measure. Some say that they have slept with the lens in for years. Personally, I did not want them, because I am afraid of infection.

I was on Restasis for about a year. I had been without erosions for about four months before I stopped taking it. I also slowed down the dosage, taking it from two drops to one drop a day, to every other day.

Are you taking Dwelle, another osmotic drop, or an oncotic drop, like Muro 128 5% during the day and before sleep?

I know how you feel about trying to talk with family about it. My parents said the same thing, and my dad really thinks he has EBMD, too. He said that his one eye stuck in the morning recently and was blurry for the next couple of days. I gave him some Dwelle, but I don't think he'll use it. (sigh) It's really hard to get people to use the drops regularly when they start to feel better. There must be some kind of magic that we associate with eye drops. We expect instant relief. I know I did back before I knew what was wrong and I was buying OTC drops with BAK in them and feeling confused when my eyes would feel drier.

Anyway, I have erosions and EBMD, too, and I maintain with Dwelle drops, goggles at night, a healthy diet, fish oil supplements, exercise, and a regular sleep schedule. Sometimes, I use steam or a wet (warm or cold) compress, just to moisten my eyes at night. It took me about nine months to get away without erosions. I'm not stopping my routine, though, because I think that this is something that is with me for life, unfortunately.

Hang in there; keep trying things, and just save what works. Good luck!

--Liz

[bernmee]

Hi,

Liz56, nice to see you as a moderator, you were the person who welcomed me to this site...something you don't forget.

I had erosions for a few weeks caused by Lasik surgery. After three weeks I got a BCL and it was left in for about 12 days, give or take a day. It was changed twice within that time. I was talking to relative in a different state who said he had been to a conference where BCL's were discussed and new research found that they should be left in for some time to get the full benefit. I wouldn't let my surgeon take it out after two days as I was peeling my eye lid off it, and was afraid of the alternative. I got plugs in to help with the tears. Eventually he said he had to take it out because of infection....I'm sure I would have had it in forever if I could, boy was I scared to go to bed that night!!

When it did come out he gave me a lens to take home in case I had an erosion over the weekend. Thankfully I didn't need it! My experience was short, and I can tell you not very sweet.

Why are you on Azacite? That seems to be a new thing that is given to people with MGD. Here is a thread discussing it.

http://www.dryeyezone.com/talk/showthread.php?t=7022

Good luck,


Bernadette

[liz56]

Hi, Bernadette.

Thanks for the nice words. More importantly, thanks for the good news! I'm really glad to hear that you are healing and are out of the cycle of RCE's!

Best,
Liz

[Lucy]

Hi Liz-nice to see you as a moderator. I also noticed Ian. This should help Rebecca! This is a busy board. Lucy

[cleareyed]

Welcome to all the new mods! Thank you for giving of your time and experience and in welcoming all us newbies here.

Azasite? I wish I could regurgitate why the doc gives me what he does. I feel I have been on so many things, literally a 'let's try this' mentality.

He said Azasite and Restasis work well together. He gave it to me after the treatment of my August erosion and keratectomy. During past erosions I was given Zymar, Zylet, Muro 128 gel in a tube for night-time and a few others I have not used in a long time. I like my doc's results but his communication style leaves alot to be desired. He doesn't answer questions well, and speaks fast like he's had 20 cups of coffee.

My daily routine for goodness is now only Restasis 2x, Theratears as needed, and Gental Gel Plus at bedtime. I also have self-prescribed lots of water and mandatory 2 glasses of water before bedtime, Vitamin B Complex, and Omega 3 6 9 Fish Oil capsules. The doc today, during my cornea check, gave me a sample of a TheraTears Omega 3 Fish Oil and Flaxseed supplement for eye health. I'll have to check price on those before I decide to keep them.

I have had a bit of blurry visionin the left eye since the last keratectomy. He said it was due to the larger area removed from the surface. I hope it is temporary. My prescription glasses were perfect since I got them. I don't want new glasses yet.

[liz56]

Lucy,

I remember when I first posted on the DEZ, and you were the first one to reply to me. I still remember and appreciate that!

Ceareyed,

Your routine sounds good, and I am glad to hear that it is working! I have read that keratectomy helps people with RCE's. I hope that you keep us posted about your long-term progress.

Is your blurry vision corrected to a degree with glasses? In my eye that did not have terrible erosions, I have a "wrinkle," according to my corneal specialist. It is caused, he said, by EBMD, and "it should go away." However, I've had it for months, and it is annoying. Everything has a shadow, and I get starbursts on lights at night in that eye, too.

It's a good idea to give your time to heal before getting a new pair. I got a new pair when I was having problems, and, now, they are too strong for me. What a waste!

I hope that things continue to improve!

--Liz