Recurring Corneal Erosion - The ongoing Fight...

[dj5000]

Hey fellow dry eye friends...My name is Dave and I've been dealing with Recurring Corneal Erosions for the last 2 years. This is a condition that is clearly under rated - we always hear about these diseases that are out there that really mess up peoples lives...but I hadn't heard of this until I was diagnosed. I'm simply writing to inform and share my experiences with it so far in hopes that it may give some hope to others who have been dealing with it.

Diagnosed about two years ago - it was misdiagnosed by an NP first as allergies...then after it healed it came back a couple weeks later so got a 2nd opinion from a general family doctor - told me it was allergies again and I quote "my eyes just had a cold". Prescribed stronger allergy meds and eventually healed. But as the title reads it's recurring...and it did. Finally went to an eye doctor who diagnosed it and referred me to a corneal surgeon/specialist who treated it with some drops - MURO 128 at first and a bandage lens...HEALED finally - for about 3 months or so...

To celebrate a week later, I went out and had a good time with friends and drank a little too much...woke up the next day and BAM it's back!!!

Corneal Erosion happens mostly in the morning when you wake up - your eye will dry out (in this case it was due to excessive alcohol drinking) and when you open your eye lid, the top layer of cells of your cornea are pulled away exposing the nerve endings which hurts like hell!!!! It can last for days or weeks if untreated...it effects one's appearance because you become a snivling, snotty, puffy eyed mess. I basically looked like a crack head.

So in my right eye you see it's very red and irritated - I'm worried about going in public because of the way I look, it hurts like hell, my nose is stuffy with tears, and whatnot, and I'm basically miserable. To make matters worse, my first major occurrence was overlapped with Pink Eye and the equivalent of a fever blister forming ON MY EYE...this was the most pain I had ever felt in my entire life...worse than braking a bone, worse than an injury I've ever had...thought I was going to die.

I had that treated with drops and eventually the eye healed but with permanent scaring - so I see black spots in certain areas of the eye - luckily nothing that hinders my overall vision - but still annoying sometimes.

Thankfully I haven't had a recurring erosion in my right eye in over a year, but it's moved to my left eye and have been dealing with that now for about a year which has led me to the procedure I had done today.

The Superficial keratectomy I believe is the scientific name for it. It's the scraping procedure that removes all of the old epithelial tissue from the top of the cornea so that all new tissue can grow back together...

Here's what the procedure is like: They numb your eye with drops...no needles woohoo!!! You sit in the exam chair and the Doc shines the light in your eye and while looking through the scope he uses a small scalpel and scrapes the tissue off the top of your eye...it feels uncomfortable, but doesn't necessarily hurt...the thought of someone taking a knife to your eye is what makes you squirm...but it's relatively painless - a few deep breathes each time - concentrating not to blink and it's over in less than 10mins...in my case he put a bandage lens on..sent me home with 3 different types of drops and a script for some Tylenol 3...took the Tylenol soon as I got it, went home and slept for about 4 hrs...

Amazingly the eye, almost 12 hrs after procedure, isn't inflamed or red at all...looks better than it ever did while an erosion would flare up. I'm not in pain...my vision is still a little blurry..but the experience so far is far, far better than I thought it was going to be. I'm a professional musician, so my eyes, my appearance, , my ability to work, and my sanity were all at risk every time I had an erosion occur...it's only been 12 hrs, but I feel confident that I made the right choice to have the procedure done. I'm online surfing the net and writing this blog so my vision is better already.

I go in for a check up tomorrow to make sure no infection has set in. I've learned through all of this is that the eye is one of the most fastest healing organs on your body - and I've learned alot about the parts of the eye which has been interesting.

I'm hopeful that my problem with RCE will be significantly reduced from this procedure...time will tell. I've learned that drinking alcohol excessively can increase my chances of a recurrence so I'm making changes with that...and I'm also hydrating my body by drinking plenty of water every day now too.

I really was not able to find alot of info about this topic when I needed it most, but hope that this information will be comforting to those who read it.

I'll continue to update this thread with my progress.




OK - so 2.5 days after procedure...my left eye's pain has almost completely gone away...I went through 4 doses of Tylenol 3...still seeing a little blurry but I can tell it's healing..actually felt like keeping it open all day today after sleeping most of yesterday..I suppose the real test will be when the lens comes off next Thursday.

[liz56]

Hi, Dave.

I'm really sorry to hear your story. I've been managing the problem myself for over a year and started suffering from it two years ago as well.

Since you have experienced the problem in both eyes, have you asked your doctor about EBMD (epithelial basement membrane dystrophy, a.k.a. anterior basement membrane dystrophy, map-dot-fingerprint dystrophy, Cogan's dystrophy)? While 90% of people with the dystrophy never have RCE's, there are those of us who do get them.

I'm glad that the SK procedure worked for you. A lot of people here have it and / or are considering it, so your experience is really helpful to know.

Thanks,
Liz

[Missie]

So sorry you had to go through all of that Dave, but I am glad you found a Dr. that helped you. I don't know how you held your eye open ~ hopefully the scraping didn't take long. When you said the eye is the fastest healing ~ I'm thinking I'm doomed with my right eye. Because if it's chemical burns from all those eye drops I used (if there is such a thing) looks like it would be better by now.
Thank you for sharing your story.

[dj5000]

Try to find a corneal specialist...

Missie,

If you are in TN, I'd consider visiting one of the Loden Vision Centers in Nashville - there are 5 locations scattered around...the receptionists are kind of stuffy at first, but all of the doctors I've met so far who have examined me have been quite good - and as of right now I feel pretty good about my procedure's results...the doc I've used is Dr. Daugherty...

[NCRedhead]

Been in that boat with you...

I agree that you need to see a good dry eye/corneal doctor. If you mostly get the erosions at night, you likely do have EBMD, which several of us here have. Using Muro ointment at night helped most of the time and, sadly, no glasses of wine or mojitos for me anymore. Maybe a sip or two, but not a whole glass. If you do drinkI also avoid drinking caffeine as well...just one cup of coffee or tea in the morning. (NOTE: You can order Muro ointment online from Canada MUCH cheaper)

However, I did not get a real break from erosions until it was finally diagnosed that my problems were compounded by my eye oil glands not functioning well. Once I went on meds for that, I have not had an erosion since then. Now the bigger challenge for me is keeping THAT under control long-term.

Good luck. Feel free to contact me by message if you want to talk or just need some sympathy. I know how frustrating and painful it is for you

[katie333]

In the same boat as well. I have EMBD and had a lovely RCE again last night. I hate the trudge to the bathroom to splash cold water on my eye, drop it up and then more Muro. I then lie in bed until it calms down enough to fall back asleep. Maybe there is a better way to combat the 2am RCE?

The surgery option is interesting. My eye doctor has suggested that if I have any more errosions during the day that we consider laser surgery. When I had my last (also my first!) daytime errosion, it took a scraping of the eye surface to remove the dead edges, that sounds similar to your procedure. It solved that problem but RCE are still occuring at night, on average every 3 weeks.

I wonder if that is more frequent than most?

[Janis]

Hi Everybody
As a Recurrent Corneal Erosion sufferer for more than five years I was pleased to read your post Dave - that you have had the scraping procedure and that it has helped. I am due to have my right eye scraped on the 13th October (lucky for some as they say) and am rather apprehensive about the outcome.
I have PVD in my left eye which has given me floating spots, sometimes quite a nuisance although a lot of the time I hardly notice them but I certainly don't want any further problems with my right eye - so keeping fingers crossed.

I am diabetic and also have under-active thyroid so bandage lens not suitable. After using Zovirax a couple of times I found I am allergic to it as it made the whole of my eye, face and mouth swell also made my eye burn like -- so can't use that again. Chloramphenical had the same result!

And believe it or not the Viscotears artificial teardrops contain Cetrimide -
"....Cetrimide, which can give rise to further complications including Corneal irritation, Erosion, Ulceration"and this is supposed to help heal the eye!!! I hear there are preservative free drops available so perhaps the surgeon will agree they are ok.


Hope you will update your experience Dave as I would be interested to know how you are getting on now and anybody else
who has had this procedure.

[mommychew]

Janis, I hope your procedure went well.
Dave, how is your recovery going?

I too had the scraping thing done - and then I had another really bad erosion, so I had another scraping and this time my doctor poked lots of holes in my cornea. The new one must have held on tight because it's been more than a year since that procedure and I have had no erosions since.

I'm glad someone noticed that dehydration is a big issue. I'm going to add alcohol and caffiene to the list of foods to avoid. Any other advice on preventing dehydration?

Also, on my first scraping I had vicodin, and on the second tylenol 3. The vicodin is much better. It made me constipated, but managed the pain much much better for me than the tylenol. Just my two cents. If your doctor gives you an option, choose the stronger painkiller. You can usually cut them in half if they are too strong, too.

Best of luck to all you dealing with an erosion today - my heart goes out to you and I pray for a quick healing for your eyes.

~Sheila

[2catsonEmerald]

PTK surgery and scraping for RCE

Sorry to hear all of your problems and I hope you are all on the road to mend. I've had RCE for about 5 years now and decided to have PTK surgery 1-1/2 years ago. He also scraped my eye while I was having the surgery. Well, it lasted about 7 months and I had the WORST erosion of my life! Even worse than before the surgery. Then I went 7 more months with no problems and WHAM! another one. Each time my vision is getting more blurry from the damage..so I don't know if the scraping helps for the long term. I thought I was healed, but it happened again! Going for a second opinion in 2 weeks, I can't deal with the pain anymore!

[Janis]

Sixteen days on from my scrape and and 'diamond polish' eye seems ok - ish. No more erosions to date but
reading your posts 2catsonEmerald and mommychew I am just keeping my fingers crossed that all will be
well from now on. Vision in that eye is still a bit blurry but was told it should gradually improve and I have
another check up appointment beginning December.

Antibiotic drops and steroid drops were given for seven days then I was given preservative free Viscotears to use.

If this doesn't work Consultant said a corneal transplant might be the answer

[Janis]

Since I had an eyescrape on 13th October all had been well until yesterday
(which was 13th) and I woke during the night with a very painful eye. Oh no!
not again I thought. After being awake the rest of the night I feel really like
s**t through lack of sleep. My eye is still very sore and I am finding the sight
in that eye is more blurry since this occurence.

My next appointment, for a futher checkup, is 8th December. Should I wait the three
weeks and hope things improve by then or would it be best to see the consultant again asap?


.

[ChristineK]

Hi,
I am new to this group and I am so very happy to have found some info and support. I have had recurring corneal erosion for 5 months now. I originally had a corneal abrasion on Jan 10th and within 4-5 days I recovered, but after that every morning I had the extreme pain in the right eye and tearing. For a long long time I wasn't diagnosed. Every doctor just said I have dry eye and gave me eye drops to use, but things did not get better. Finally in mid. March I've found a specialist who did diagnose my condition. A week ago I was on a business trip travelling in Denver when I started to have an episode and the tearing was so extreme it would not stop. My eye swell up like a bee bit me and my eye was red. I ended up calling 911 at my hotel and went to a hospital at 3 am. The ER doc just looked and said it looks like a huge tear and a part of the cornea was flapping back and every time I closed my eye I was in extreme pain. I ended up being up for 48 hours without any sleep. I've changed my flight and got back and went straight to my specialist who put a contact lens bandage on. I had it on for a week and what a "bliss" I was able to sleep and did not feel scared to open my eye to have another episode. The contact lens bandage was taken off on Tuesday this week and I have that "sand feeling" inside the eye now, but I am not in extreme pain. Taking my Muro 128 drops and ointment and will go back to the doctor on May 20th unless I am in "trouble" earlier. I feel so lonely and scared and hope to learn more about all this. Thx for reading my lines.

[Minni]

There's also Prokera, and similar stuff.