Hey guys, Just got diagnosed with RCE about 4 months ago!

[Mike2000z28]

Yeah we did the eye test and i scored a 20/150 on my right eye!! talk about perfect vision!! Im just kinda weary about the whole buffing/scraping procedure because i think that is what is next. I guess if it is infact viral which personally i don't think it is since i haven't displayed any symptoms of herpes simplex ill know in 10 days since it tells me it takes about 7 days till you get better.

[Mike2000z28]

HUGE UPDATE!!
Basically went back on Wed May 27th for a Cornea skin test where they put a small paper bandage on your cornea to get sample cells. Well a resident trainee did it 3 times to right eye which they thought had a herpes or mapdot. Anyway after she lifted the bandage off instantly things looked underwater and blurry(keep in mind they numbed my eye). Afterward she looked at my eye afterwards and kindly said uh in about 35 mins when the numb drops wear off you will be experiencing some discomfort since all of your layers of the cornea are sloshing around as she put it. Anyway longstory short.

Had to stop driving 5 mins from home, had someone to come get me. Intense pain overcame me and couldnt see at all. Had to have both eyes shut for 2 straight days blind as a bat, missed work from Wed till today. Basically last friday they had to put a contact lens on me just so i could sleep since the numbing drops were only lasting 20mins since the pain was so intense. I lost 4 days of work and was really scared since nothing has ever come close to this before.

And i do have Map/dot/fingerprint officially in the right eye and no viral infection. So basically i was sleeping/resting for 7 days after this cornea test. They told me since i had an abnormal cornea that it affected all the layers and usually it just takes off the superficial first layer. Well Geez thanks!!

They are saying once i heal about going back to muro128 and drying out my cornea, i already told them that the muro128 causes much more erosions and im better off without it or give me something better. Before this i never had a erosion that lasted more than an hr. Do you want to moisturize your eyes or do they want to dry them out, im confused anymore.

[liz56]

Hi, Mike.

Sorry to hear that story! Oh, my! It's horrible that you had to go through that, and I hope that you are feeling better.

The issue with EBMD is that it is a very, very thin layer that constitutes the epithelium, the thing that needs to "dry out." However, what makes it hard to understand is that the is the underside of the epithelium that needs dryness. It is the moisture beneath it that prevents it from adhering to the basement membrane, which attaches to the stroma (the bubble part that we can see when we look at an eye sideways). The outer part of this very thin epithelium needs to bet wet. If the outer part is dry, it helps the eyelid to stick to it, which makes it easier for the epithelium to lift off from the basement membrane. So, the drop needs to draw the moisture out from behind the epithelium and distribute it evenly over the outer surface of the epithelium.

This is why Dwelle and FreshKote work so well. Maybe the next time you see your doctor, you can ask about Freshkote. It requires a prescription in the US.

When you say that Muro 128 5% does not work, do you mean the ointment or the eye drop?

--Liz

[Mike2000z28]

Hey Liz. Well i live in Canada and cannot get Dwell. The doctor gave me fresh i think its called. Its a preservative free drop. When i say Muro128, i mean the ointment. It did nothing but cause more erosions and crust when i woke up and not to mention impossible for me to get in myself. My wife had to do it before i hit the sack and going to bed at different times its a pain to ask since we work opposing schedules.

Do you know the best drop available in Canada?

[liz56]

Hi, Mike.

Was the drop that your doctor prescribed, called Refresh? The preservative free version of that is something that I use in the mornings before even opening my eyes to help them not to stick. The drops are good for that, but I do not use them during the daytime, and they do not help with ABMD.

Can you find Clinitas Ultra 3? It is the same thing as FreshKote (quite similar to Dwelle) but is sold over-the-counter in the UK. That might be worth a try.

I also had a terrible experience with Muro 128 5% ointment. It made my erosions worsen, I felt. I told my second ophthalmologist about it, and he took me off of it and left me on the drops. That was a better set up.

Also, you might want to try the Muro 128 5% eye drops. My doctor (the second and last corneal specialist I saw) said to apply the muro drops every five minutes for 15 minutes after waking up. Also, try using them about fifteen minutes before applying Genteal Gel before bedtime. This worked for me, which is not to say that it will work for everyone; however, if your doctor is just giving you drops that are regular, bland drops that do not help with drawing the excess moisture out from behind the epithelium, then it might be worth a shot.

Dealing with this problem takes a lot of patience. I had to establish a routine and stick with it, and, even then, it took me about nine months before the erosions completely ended. Keep spending time trying to figure out what is going on and when. That will help to direct you toward what to keep doing and what to steer clear of.

I wish I could help with Canadian drops suggestions, but even though I live close to the border, I am unfamiliar with their offerings.

Best wishes,
Liz

[Mike2000z28]

UPDATE!

Well after that episode with my corneal layers being disrupted after sampling my cornea, They left a bandage contact on from June 1st till yesterday and my cornea fully healed and my vision went to 20/20 in both eyes. It was great to have normal vision. He took out the contact yesterday and prescribed me muro 128 cream and muro 128 drops even though i told him how the cream sucks and didn't work for me and i think made things worse.

Well bedtime comes last night and im like well, ill try the cream again. Woke up with an erosion and now vision is blurry, a month down the drain for nothing. Needless to say im pissed off because now it seems, my eye is at the point of beyond treatment. I mean cream/drops didnt work. The first 3-4 layers of my cornea were dissplaced after they put that thing on my cornea so they grew back and obviously didn't grow back any stronger since the first time without the contact lens i get an erosion right off the bat the first night.

So what do you do now? I mean it seems every surgery involves taking off the first layer of the cornea and letting it regrow, and since i already had that done unofficially, and it failed. I do like the muro drops better than the other drops i had though.

Mike

[liz56]

I'm so sorry to hear this news. Dr. Foulks said that it takes at least eight weeks for the cornea to heal fully. I know that it took me nine months to get to a point where I could manage things without erosions. That does not mean, however, that my eyes are no longer painful, that I still do not have sticking in the morning, or that my vision is perfect. I still have some scarring in the place where a corneal ulcer developed due to misdiagnosed and mistreated erosions.

Please be patient and keep using the Muro drops, like they prescribe them-- every four hours or so through the day. If the ointment does not work for you, then try Genteal Gel at night. The combination of Muro drops during the day and Genteal Gel at night did work for me.

Dwelle worked the best for me. Unfortunately, it is out of stock until mid-July. It might be worth a try for you if this latest effort does not work.

Thanks for checking back in; it helps to hear updates, even if they are setbacks, because things feel so hopeless when that happens, like, now what can I possibly do now that I have tried everything? Other people might be going through the same thing, and it is good to know that in spite of setbacks, there are still things we can do, and it takes time to heal up correctly and fully.

--Liz

[Mike2000z28]

Hey Liz, is it normal for the muro 128 5% drops to sting when i put them in. BTW after my first night erosion and obviously stopped putting the muro 128 ointment, i just use the drops now like 4 times a day and no erosions the past few wakeups in the morning. I think if i didn't take that damn ointment, i might still have clear vision right now. Let me know about the drops if its normal to sting like hell.

Thanks
Mike

[liz56]

Hi,

I don't now if burning with Muro happens for everyone, but it did with me. It also made my eyes red.

I'm happy to hear that you are doing better!

--Liz

[Mike2000z28]

SETBACK!!!!!!!! Had a major major erosion, worse that i have had besides that one time in the hospital when they took a cornea sample. Anyway the Doctor did a puncture on me. I have a contact lens back in. I really truly hate this condition. Its 3 1/2 hrs minimum every visit to the doctor. Ill keep you updated.

Mike

[liz56]

I'm so sorry to hear this news, Mike2000z28. My erosions were very stubborn, and I thought that I was well on the way to healing, and, out of nowhere, I'd be hit again. For some reason, about eight months into it, they got really, really bad, and I was having them a couple of times a night. My corneal specialist was considering stromal puncture for me, and I really trust him, so it is something that I might have done, had the erosions not abated. They really reduced once I started using Tranquileyes. (I'm pretty sure that lagophthalmos is a contributing factor for me.)

I also know someone who had RCE's, due to her cornea being scratched (gouged, actually) by her baby's fingernail. She had stromal puncture, and the erosions stopped after that. So, I hope that the same happens for you!

Thanks for keeping us posted.

--Liz