DrG
I was a little confused about the Muro comment he made also, given that after your previous mention of it I spent severa hours on PubMed looking for management/treatment of RCE's and it sems to be very common in the management plan.
I can put up with the vision disturbance from the plano lens on most days, they just get me down somedays when I am trying to concentrate at work and my eyes are feeling really gritt and my vision is all over the place.
I will take your suggestion and ask for some mild minus power lenses at my next visit or ask for some different flavours to try. They have given me Night and Day and B&L something. I think the B&L Lenses were better of the two.
I am keen to avoid debridement - although I felt I was backed into a corner previously, I don't see that taking the whole surface off and starting again is necessarily a step forward. My gut instinct is that I will end up worse off and I am not going there. After all, as you reiterated, my epi-lasek was actually a debridement in the first instance. It is just one of those things that is hard to decide right from wrong so I will take the conservative approach.
I do OK most days, it is just waking with an abrasion that seems to really kick me for six.
Thanks to Rebecca, I have tried Dwelle and Dakrina, I just found that when I used Dwelle of a night, I ended up dryer in the morning (but that was also when I had no tear film at all, now I at least have a small tear meniscus) It maybe time to try Dwelle again.
Thanks again for your comments and suggestions, I do value them and will keep updating this thread as things progress as I am sure they will.
Ian
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6 Months post Epi-Lasek. Induced dry eyes
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Guest replied
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I like your new plan, Ian.
I'm puzzled why the use of Muro 128 seems controversial in some quarters. Googling "recurrent corneal erosion" syndrome brings up lots of hits, and virtually all of them make reference to hypertonic ointments at one stage in the treatment process. Dr. Holly doesn't like ointments, and truthfully, many people find them irritating. Instead of salt, Dr. Holly uses a polymer to increase the "oncotic pressure," which is similar, but not exactly the same as osmotic pressure.
It seems that all of the various treatments suffer from significant rates of recurrence. So, beginning with the most conservative approach makes the most sense.
Finally, the ways to deal with the myopic blur in a bandage lens are to increase the minus power, or use a lens with a softer modulus that will drape better. Proclear Compatibles comes to mind. You may want to resolve this issue, because you may still need to have a bandage lens in your "emergency" kit. They work well for managing the pain.
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Guest repliedDr G thanks for your comments.
I tried the taping last night and woke this morning without an abrasion so that is a good start, lets hope I have a few more months like this and I will certainly be happy. My right eye is extremely dry when I wake but that is "normal" so I squirt some unpreserved saline in before I take the tape off.
I am not wearing a lens at all. The Dr yesterday said to do 1 or the other. So I am trying the taping for now and am using Genteal Gel underneath it.
I am also going to apply drops as a preventative measure 3-4 times per day to see if that helps also.
My vision without the lens is really good, it was rubbish for a day or so when I first took it out.
Your explaination about the Muro is so much more precise than I got yesterday. He said I didn't have any staining but there were several microcysts directly under the cornea.
Both corneal specialists seem to think this will resolve with time and patience. Generally is this true, I fear the unknown and the prospect of having to deal with this indefinately.
Thanks DrG for your comments, I really do appreciate them.
Ian
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Originally posted by prattstarNow C66 which surplus product do you suggest I use when I have a DR that is causing me a pain in the A%£&, will Sterilid work for that as well???? Ian
Best,
C66
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Originally posted by prattstarHe has ruled out debridement (as too invasive and unlikely to resolve the issue, and most likely put me back several months). Instead, he suggested that I goop my eyes with gel and tape my right one closed of a night and see how this goes for a month or so.
He asked how I was getting on with the bandage lenses as they need about 3-4 months of continued use for them to be effective. I told him that my vision is crap with the lens in (they all seem puzzled by this comment). I am convinced that my reshaped cornea is not accepting of even a plano lens and distorts my vision. They don't understand that I have a life to live, a job to do and I drive of a night - something I just won't do with a bandage lens in due to the effect on my vision.
Regarding how long it takes, I use them acutely when the problem is acute, and long term when the problem is chronic. Most cases of RCE are of the episodic/acute type.
I suggested the Muro of a night and it was his opinion that the last thing my cornea needs is a concentration of salt of a night to dehydrate it even further. I have found on the instances that I have used it that my eye is extremely dry in the morning.
Please don't misconstrue any of the aforesaid as medical advice, but simply observations. Sometimes, there is just too much information to absorb.
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Ian,
I'm sorry to read about your struggle with the specialist. I truly wish for you that you'd walked out of there with something to go on. I do wonder as well if sclerals may help you begin to control the situation.
It also came to mind the theory behind blood serum drops. They are alleged to help heal damaged corneas. I know it can't be easy for you to get, but if anybody should offer to prepare them for you, you might consider it.
I'm sorry I don't have anything better to suggest, or offer...I don't even have a good joke to tell.
I do hope things start to to look up for you. We need you in good humor around here.
Diana
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Guest repliedThanks everyone for your suggestions, at least my mood has lifted a little.
Just arrived home from London, feeling exhausted as always but I am determined to get this sorted.
I will email the clinic in a week and let them know how I am getting on. Thanks Rebecca for investigating the Sclerals let me know what they come back with.
Sazy, I will check out the DR you mentioned and see whether they are an option.
I have the mobile of the first Corneal Specialist I saw a month or so ago (big mistake on his part), I liked him so will call him and see what he has to say about this latest diagnosis.
Have been practising taping my eye closed, not as easy as it sounds I might add.
I rarely use any drops at all during the day, I am finding that whilst my eyes feel a little gritty they have a good meniscus and look generally OK. Nights are my worst time.
I think I will try 3-4 times a day just to see how I go during this next phase.
I think I am most angered by the no follow up appointment thing - just indicates to me the DR is at the end of his professional knowledge and wants me to go away - well THAT AIN'T HAPPENING.
I am going to email the practice owner tomorrow to make sure of it. I felt so much in limbo this morning but I will sort this out. And thanks again for your suggestions, I really needed a lift.
Eliga thanks for your lovely email, it really boosted my spirits. Will reply tomorrow.
Now C66 which surplus product do you suggest I use when I have a DR that is causing me a pain in the A%£&, will Sterilid work for that as well????
Cheers
Ian
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Sclerals cannot be worn while sleeping but it is an interesting question whether wearing them during the day for a period could promote enough healing to halt the RCE cycle. Not trying to push anything on you Ian but just to satisfy my own curiosity I've lobbed a question to BFS about their experience with this kind of therapeutic use.
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am just so dissapointed with this guy, I was led to believe he is a leader in his field - maybe he was just having a bad day also, or maybe they just don't know what to do anymore.
Would sceral lenses (bandage lenses) help with your RCEs?
You can get them from ken plunum (sp?) in london, do a search for the web address.
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Keep on going, Ian
Ian,
I would suggest that you post a question to one of the online eye doctors here about the topic of debridement - when is it appropriate, what works as an option, etc. That would be in keeping with Rebecca's rules for doctor postings, but would get you another approach to consider.
You have gotten so many differing opinions - let's see what the Dry Eye experts have to say on this matter.
FORUM - give Ian your advice, gang!
It was inhuman to tell you to wait another month to see what happens, and not even give you an appointment. This is a sign that this doctor is the wrong guy, expert or not. Rebecca's suggestion to work on it during the day is a good one.
Why don't you see what this so-called expert says if you email him back in a week, instead of a month, with your progress?
Best wishes,
Elegiamore
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Originally posted by prattstarMaybe I should go back to using them 3 - 4 times just as a preventative measure and see if that helps.
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Guest repliedC66
I am not sure about Sclerals or their availablity in the UK.
The Dr's that I have seen seem confident it will improve. My eyes feel OK - not good but OK but I keep getting the RCE in my right eye.
I have tried bandage lenses and find them OK, I just struggle with the poor vision I get even with a plano lens. None of the DR's can tell me why the vision is poor with the lens. I am convinced it is because my cornea has been reshaped from the surgery.
The Dr seemed puzzled today when I said that I get abrasions occasionally with the lenses in (of a morning when I wake).
I will put another lens in tonight, goop up, tape my eye closed and see if I can tolerate it. My vision is actually good now (still have night time problems but during the day it is fine). I read the 20/20 line with no problem at all today - not that I am convinced this is a good measure of vision quality.
I am just so convinced that if I could get this RCE under control, my DES symptoms would no longer be the domination of my life. After all, I use very few drops during the day. Maybe I should go back to using them 3 - 4 times just as a preventative measure and see if that helps.
Ian
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Ian, I forget--are you a "candidate" for a scleral lens in your problem eye? Sounds like vaulting over the cornea with a protective lens would help you.
C66
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Guest repliedOriginally posted by Rebecca PetrisI am not given to violence, but honestly, I'd like to reach out across the pond and slap your specialist.
I am just so dissapointed with this guy, I was led to believe he is a leader in his field - maybe he was just having a bad day also, or maybe they just don't know what to do anymore.
I'll get there, it is just so tough sometimes.
In the scheme of things I am still taking three steps forward and two back - nothing much has changed, so long as I keep going forward that is all I ask for........
Thanks for listening
Ian
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((((((Ian))))))
I am not given to violence, but honestly, I'd like to reach out across the pond and slap your specialist.
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