New Recurrent Corneal Erosion Diagnosis: Help please..

[Emmak78]

Hi all,

I am new to this and would be grateful for any help/solutions anyone has found to RCE. I realise you may not be able to answer all of the questions but just one would help!

Background

End July this year went to A and E after my 14 month old son accidentally stuck his fingernail in my eye. Diagnosis severe corneal abrasion. Was in bed for 2 days, painkillers, antibiotic gel and then all seemed well. Then end Sept (8 weeks exactly) woke up with acute eye pain. Happened 2 or 3 nights in a row and was so bad I went back to A and E. Shockingly bad management- saw a senior triage nurse at the hospital- she insisted I could not see a doctor that day, didn't even bother to look at my eye- put me on the wait list for a corneal specialist and sent me away with no advice (thinking whether to complain but another topic...). Appointment came- 5th Dec NHS. Paid to go private and specialist diagnosed RCE (which I had already diagnosed looking at this great forum and other sources). Sent me away with rx for viscotears 4x daily and lacrilube overnight.

Viscotears seems to be Ok but worried about preservative content so swopped to Cellvisc 4 x daily. The one time I tried Lacrilube I had the most painful night ever- 3 erosions in 1 night and eye so sticky. No longer going to use.
So basically looking for help and suggestions for my routine at the moment as erosions still happening around twice weekly... Any answer to any of questions below would be extremely helpful, I don't expect to have them all answered but to talk to some of the people on here who have been suffering for a long time would be great.


1. Daytime: what has anyone found to be a good preservative free drop? I am using Celluvisc 4 x daily but it does leave gunky residue on eyelids-is the 0.5% better?. Also tried Blink but not very soothing. Seen lots of mentions of Dwelle on here, is that still available? Anyone know UK brand name?
2. Night-time: at the moment using Artelac nighttime gel before bed plus Celluvisc 2-3 times in the night. A good tip I read on here was if you awake and feel your eye is about to tear and very sticky, keep it closed and dribble lubricant on it for a while until you can open comfortably. I'm sure this has averted a few tears for me but sometimes I seem to wake and I am already in pain with my eyes open. Any reccomendations for a long lasting gel and not ointment? Have been put off ointments by reaction to lacrilube.
3. How does anyone else deal with the pain right when you have a tear? Is it better to keep eye open or closed? Cold flannel? any tips while it is acute?
4/ Anyone tried Tranquileye goggle for rce and had an improvement?
5. I was diagnosed with RCE in one eye and have only ever had erosions in that eye. Therefore should I only treat that eye but doctor said I have dry eye in both my eyes? Should I treat both?
6. How much of a role does dehydration play in RCE? Anyone know? I don't drink much through the day...
7. Anyone out there who had a similar trauma like mine and has recovered? Doctor said if I can get through 3 months it could recover? Any thoughts?
8. will warm compresses before bed help rce or just dry eye?

So many questions and I have found so little information out there for this horrible affliction. It is making me anxious to sleep at night and what sleep I do get is interrupted every 3 hours or so by the need to add more gel.

all help welcome

Thanks
Emma

[NotADryEye]

I had RCE for one year after dropping a bristle hair brush in my right eye. This happened one year or so prior to dry eye diagnosis. The wound did not close properly. I used all sorts of drops and had countless bandage lenses applied for up to 10 days at a time. I was prescribed various drops and ointments depending on what specifically was happening at the time e.g. inflammation, prevent infection, close the wound, etc. For example, early on after the second reopening, I was on Muro 128 drop every hour. The wound would close for a few weeks at a time. But eventually the wound just reopened and did not close. I was referred to a corneal specialist.

The solution was stromal puncture - many many needle pricks push the epithelial layer into the basal layer. The cells grow into each other and the wound finally heals. It is effective 80 percent of the time the first time. I was not lucky and needed a second procedure. But the second time it worked and I have not had any problems ever since.

[harborgirl]

NotADryEye,
How are you doing now after your stromal puncture procedure? I had it done in both eyes in Dec 2013 & my left eye seems to be healing (knock on wood!) but my right eye is not, i had more erosions just last week & the Dr redid the stromal puncture on my right eye & placed a BCL in it. I'm just looking for other people's experiences
The Dr mentioned next step would be a diamond burr if this doesn't work & that scares me.
Thx!

[Rowanberry]

Emma, I have just seen this thread, sorry.

I had very bad RCEs, every time I went into REM sleep I would get one and I was despairing. Three years after seeing a consultant I am not cured, but things are a lot better.

Surprisingly, using celluvisc every half hour or so during the day made a difference. It cut done on the inflammation and swelling I had from so much damage. Now I am down to about 8 times a day. I have realised that even the smallest bit of grit can cause a reaction that causes RCEs so I wear padded biker sunglasses out of doors and goggles, moisture chamber ones but others work, indoors when I do anything dusty like make the bed.

At night, I wear tranquileyes goggles and use lacrilube AND viscotears. I don't know for sure, but I think the viscotears lubricates my eyes and the cream holds the moisture in. I repeat the drops whenever I wake up, which is at leats once or twice through the night. (Neither of the drops made any difference alone.)

As I wake up, I've trained myself to grab my eyes to keep my eyelids shut - have had a few erosions because I seem to open my eyes as soon as I wake even if I try to keep them shut. Then I gently rub the eyelids in a circle to separate them from my eye.

Before I do anything else, I use a hypoallergenic eye makeup remover pad to wipe my upper and lower eyelashes (a quadrant each) and then flood in celluvisc, more than I use during the day.

As I said, I still get erosions, I have gone as much as 5 weeks without one then it was every night for a while, but I feel much more in control and my eyes are not swollen and painful all the time anymore.

Hope you have found something to help,

Rowanberry

[ChristineK]

my story

Hi Emma,
I have RCE now for 5 month. I ride horses and I accidentally poked my eye with a piece of hay in January. I healed but after the initial injury I started to have the erosions every day and took 2 months before they even diagnosed me. I had a very bad erosion last week and ended up calling 911 because I was sure I am going blind. I looked like a bee bit me and I did not even see anything anymore from all the swelling and tearing. I ended up getting a contact lens bandage. I had it on for a whole week and it was amazing. I wasn’t afraid to open my eye in the morning and the lens kept me together. What I do is using Muro 128 drops and the ointment and I massage the eyelid before opening it every morning. Ice keps a lot. I also wear an eye patch at night. Keeps the eye more moist and doesn’t let dry out and I do not accidentally rub my eye. I had this condition now for 5 month, but I read some people had it for 2.5 years. I guess I am in the begging of this journey. It is a very scary and painful condition. I wish you to heal and for all of us to get better.

Hi all,

I am new to this and would be grateful for any help/solutions anyone has found to RCE. I realise you may not be able to answer all of the questions but just one would help!

Background

End July this year went to A and E after my 14 month old son accidentally stuck his fingernail in my eye. Diagnosis severe corneal abrasion. Was in bed for 2 days, painkillers, antibiotic gel and then all seemed well. Then end Sept (8 weeks exactly) woke up with acute eye pain. Happened 2 or 3 nights in a row and was so bad I went back to A and E. Shockingly bad management- saw a senior triage nurse at the hospital- she insisted I could not see a doctor that day, didn't even bother to look at my eye- put me on the wait list for a corneal specialist and sent me away with no advice (thinking whether to complain but another topic...). Appointment came- 5th Dec NHS. Paid to go private and specialist diagnosed RCE (which I had already diagnosed looking at this great forum and other sources). Sent me away with rx for viscotears 4x daily and lacrilube overnight.

Viscotears seems to be Ok but worried about preservative content so swopped to Cellvisc 4 x daily. The one time I tried Lacrilube I had the most painful night ever- 3 erosions in 1 night and eye so sticky. No longer going to use.
So basically looking for help and suggestions for my routine at the moment as erosions still happening around twice weekly... Any answer to any of questions below would be extremely helpful, I don't expect to have them all answered but to talk to some of the people on here who have been suffering for a long time would be great.


1. Daytime: what has anyone found to be a good preservative free drop? I am using Celluvisc 4 x daily but it does leave gunky residue on eyelids-is the 0.5% better?. Also tried Blink but not very soothing. Seen lots of mentions of Dwelle on here, is that still available? Anyone know UK brand name?
2. Night-time: at the moment using Artelac nighttime gel before bed plus Celluvisc 2-3 times in the night. A good tip I read on here was if you awake and feel your eye is about to tear and very sticky, keep it closed and dribble lubricant on it for a while until you can open comfortably. I'm sure this has averted a few tears for me but sometimes I seem to wake and I am already in pain with my eyes open. Any reccomendations for a long lasting gel and not ointment? Have been put off ointments by reaction to lacrilube.
3. How does anyone else deal with the pain right when you have a tear? Is it better to keep eye open or closed? Cold flannel? any tips while it is acute?
4/ Anyone tried Tranquileye goggle for rce and had an improvement?
5. I was diagnosed with RCE in one eye and have only ever had erosions in that eye. Therefore should I only treat that eye but doctor said I have dry eye in both my eyes? Should I treat both?
6. How much of a role does dehydration play in RCE? Anyone know? I don't drink much through the day...
7. Anyone out there who had a similar trauma like mine and has recovered? Doctor said if I can get through 3 months it could recover? Any thoughts?
8. will warm compresses before bed help rce or just dry eye?

So many questions and I have found so little information out there for this horrible affliction. It is making me anxious to sleep at night and what sleep I do get is interrupted every 3 hours or so by the need to add more gel.

all help welcome

Thanks
Emma

[Lady P]

Corneal Erosion

I've been battling dry eye and RCE for years and only just found an opthalmic surgeon who understood the problem. I'm in the UK. I think in the past I had thought the problem was my eyelid and dry eye and I've now been told that it was my eye swelling up. I had agonizing pain, especially in bright light, and a dull ache permanently. I would experience a sharp almost unbearably stab in the night, several times and woke up to find the pain even worse (and that's when I finally got to sleep). If the sun was shining I had to wear extra large sunglasses and a shade and I couldn't drive. After a long wait I got to see a surgeon last year who was absolutely awful and didn't give me any hope at all just repeated all the things I told him I was doing!

I have RCE in my right eye and dry-eye in my left so I still use Lacrilube but hate the way it makes my eye feel. Will now look at options after reading what you said.

This year I persevered and saw another doctor at my practice.She referred me to a Opthalmic plastic surgeon in Sutton Coldfield. She immediately understood the problem (Eureka!) and prescribed 'Sodium Chloride 5% Eye Ointment' which reduces odema (spelling?). She also gave me some extra strength drops and suggested I try supplements including high strength fish oil and sea buckthorn oil together with vitamin C. The first time I woke up after seeing her I was pain free and have been so far (touch wood). It's not perfect and some days I experience a little discomfort but not pain. This was two months ago. I still wear my cling film mask at night (tip picked up on this site) as my eyes don't close properly and this keeps the moisture in my left eye but you may not need this. One day I hope to discard this.

I have read everything I possibly could so that I would understand the problem but I do think finding a specialist who understands too is the key.

Not sure if any of this will help but keep trying until you find the answer. I have to go back in 6 months so I'll post another response then when I've seen the surgeon for my follow-up appointment.

Penny J