6 Months post Epi-Lasek. Induced dry eyes

Since my horrific dry eye experience at my friends wedding, things have certainly improved for the better.

Have been back to the corneal specialist and it seems that the microcysts in my right eye are now gone and that my epithelium has reattached itself properly with no wrinkly bits.

The left eye still has a few microcysts but not really causing me a great deal of anguish at this point.

As I mentioned in another post, have stopped Genteal Gel and swapped it for the preservative free Viscotears and it is so liberating to be able to sleep without having to tape my eyes closed anymore.

The most exciting news of the visit is my TBUT. In my right eye it was a whopping 15-18 seconds, in my left it was a miserable 8 but improving.

He recommended that I get another permanent plug put in my left eye to help things along a bit.

I have stopped all drops, potions, lotions, massage, worry, and most importantly, whilst I still have my crap days, I don't let it get me down as much.

I have even managed to put in some full days at the office and working on the PC again, I almost feel liberated that I am able to at least perform like a relatively normal person again.

My eyes still look quite red but they are certainly feeling a lot better than what they did.

If this is 2 years after the surgery, lets hope that Dr Latkany is right when he says it can take 5 years, by then, I will be jumping over the moon if this continues.

Now I have just tempted fate again, every time I post a positive, I end up having a abrasion the following day. Let's just hope the cycle is broken.



Warm regards

Ian

[calli66]

I very rarley mention my dry eye to my wife, family or friends because it just seems to be a neverending saga with no real ending. ...i think i am managing the whole syndrome internally and like to keep it there.

I sure agree with this. Keeping the management and experience of dry eye "internal" is almost a "default" position, because nobody really understands it or believes it could be "that bad." I am always amazed at my own words when I try to explain to family members about dry eyes---I sound so "flat"---I just can't communicate it, and it sounds weak and wimpy. Anyway, I sense others losing interest in what I'm saying after a sentence or two.

The depressing thing for me is all the frigging TIME I spend messing with my eyes, just to keep them stable. And it HAS to be done. Sometimes I let go of some of the routine, just to get a break from it and feel like a normal person. But if "you play, you gotta pay."

So glad to have this forum where other people Understand.

Calli

[Elegiamore]

SO SORRY your much awaited vacation was physically painful and depressing for you. You are in my thoughts and prayers.

The wind is such an issue for all of us with dry eyes! Maybe you need to break down emotionally and start keeping some form of windblock out goggles/glasses with you to elevate possible situations and just get past the ackwardness of it. I just use situations where people ask about my various health props as a way to make conversation.

Let's here some other folks' suggestions on how to keep our eyes out of our thoughts when they are constantly painful - anyone with ideas on this?

Glad you are leaning on all of us - let's try to keep each other moving forward. I think many of us feel like giving up, but it's NOT an option.

Elegiamore

[Hangus]

Moan away old mate, I think one of the therapeutic effects of this site is that there is a sympathetic and understanding audience who know how you feel. I very rarley mention my dry eye to my wife, family or friends because it just seems to be a neverending saga with no real ending. Occasionally my wife will ask how my eyes are and i just say, the same or i am having a good/bad day. Funnily enough it seems to disturb me when people want to talk to me about it because i think i am managing the whole syndrome internally and like to keep it there.
Anyway I too am approaching my 2nd anniversary of my relationship with Dry eye and although it does feel better overall, I still have bad days and I definitely won't be buying it flowers and taking it out for dinner!
Chin up old chum
Barry

Today is just 1 month short of two years since I had my surgery.

Ghee how I wish I could be posting how wonderful my eyes feel and that I no longer suffer from this horrible condition.

Yesterday was the wedding of my good friend. A whole group of us have come to Greece for this day and we have been looking forward to it for nearly 18 months.

A day that should be celebrated and thoroughly enjoyed was probably one of my worst dry eye days I have had for such a long time. The wedding however was just fantastic, I just couldn't wait to leave though and get back to my hotel to put a heat/ice pack on for some relief.

The reception was high on a hill overlooking the ocean and I think that the constant breeze was playing havoc with my eyes.

Just when I think I am moving forward, I take another two steps backwards.

I really felt that I was getting this under control but I am starting to wonder at what point do I have the courage to accept this condition and get on with my life without thinking about my eyes every waking moment.

Sorry about the moan just needed to get this off my chest.

Ian

[calli66]

I am pleased to finally report a major improvement in my eye pain.

Hope your eyes are still improving.

Ele--I sent you a Private Message.

Calli

Hi folks,

Thanks for your enquiries, it is really nice to know there are people out there wondering how things are getting on.

I decided a few weeks ago to take some time out from all of the boards as I was becoming obsessed with my DES and felt it was taking over my life. I am trying to obtain some balance back in my life.

I have been sticking with taping my eye closed of a night and this seems to be helping.

Sazy Dr 2 claimed to be a DES specialist but I am not convinced that he has anymore DE qualifications than I do and that is zippo.

I would love to be posting that I have been cured but I am saving that post for a future date (not too distant future I hope) but I have reached the manageable stage (finally). I am only lower plugged in my right eye now, I am on Doxy for a trial of 6 weeks (inflammation seems to be going/gone), and Genteal Gel with taping eye closed of a night.

So far, I seem to be taking a few more forward steps than backward ones.

Take care, I will keep you updated if there is any major change

Warm regards

Ian

[sazy123]

Hi Ian just wondered how you were doing, do you have an update?

I know what you mean about doctor experiances, my experiances were never good, i end up coming out of there feeling more discouraged than before i went in. Makes me wonder why i bother wasting my money. The constant denials that i have a dry eye problem or much of one really gets to me (tear film looks normal blah blah, im sure it is- how do explain that i cant open my eyes in the morning from dryness then?), ive read time and time again that symptoms dont correlate with signs but still they prefer to take a schimmer/staining as gosbal.

Did Dr2 claim to be a dry eye specialist or corneal specialist?

Serum drops might be a good idea as its supposed to help with healing. A while ago i enquired about them, Prof dua in nottingham (dry eye is one of his specialities) said they were opening a bank last summer and they may be possible then. just a thought.

[Elegiamore]

Microcysts, DES and sodium chloride success story

Ian,

I am pleased to finally report a major improvement in my eye pain.

I, too, am suffering from mycrocysts and DES. My cysts were most likely formed when I had a RCE and debridement several years ago.

Taking a chance, I followed the advice of a new corneal surgeon to use sodium chloride for several weeks in the damaged eye, which is also extremely dry (5 for the schrimer scale).

To my utter amazement, the six months of severe pain is greatly reduced. The sodium chloride (Muro 128 drops) three times a day (with GenTel gel at night) totally flattened the mycrocysts. The doctor can no longer see them after this treatment.

Apparently, the eye got "drier" and this lead to me being more sensitive to the movement of the eyelid over the microcysts, increasing the pain.

He suggests that I put the Muro 128 drops in my afflicted eye each morning and then "drop" the rest of the day, with GenTel gel at night. The dry spots on the cornea are actually reduced on the eye treated with sodium chloride, compared to the other dry eye.

Now if I could just get rid of the dry eye pain....

Hopefully this information will be of some aid or at least interest to you and/or others.

I pray that no posts on this thread from you in several weeks means that you have found some relief. You are in my thoughts. Let us know how you are doing.

Best Regards,
Elegiamore

[Rebecca Petris]

Who do you believe?

Well most definitely NOT Dr. #1, who sounds like a total ocular surface dunce.

First of all, I have come to almost automatically disbelieve any doctor who tells someone with dry eye that they "absolutely do not" have blepharitis or mgd, because they almost always seem to turn out to be wrong when the patient eventually gets to a doctor who at least has some shade of literacy in lid margin examinations.

Secondly, if a doctor does not understand the role of sodium chloride ointment in compacting a damaged epi, well geez!

I believe in heping educate our doctors, but that assumes they've at least got a reasonable foundation in ocular surface disease. If not, spending time with them will do neither party any good whatsoever.

Sorry, Ian, about getting dragged near The Machine

Thank you Barry, I appreciate your comments.

It is frustrating because the clinic arranged both appointments.

I drove 300+ mile round trip for the first appointment and had to get from South Yorks to Crydon for the second. Both seem to be such a waste of time, I feel as though I know more about this than both of them put together, and I have no medical training. I guess through trial and error I have found out what works for me and what doesn't so the suggestion of trying a few different drops at 20 months post-op doesn't wash with me anymore.

Somedays, I just want to walk away from it all but know that I must keep treading water just to stay in the same spot.

Ian

[Hangus]

Ian
How about putting Dr. 1 and Dr. 2 into a ring and getting them to fight to the death? God would then decide by trial of combat who has the right diagnosis. Probably as good a method as any!
Seriously though, keep going mate, you will get there in the end,
Barry

Blepharitis - to have or not to have that is the question

No wonder as a patient I am confused when my DR's don't seem to agree on a diagnosis.

The Dr I saw last week (corneal specialist) indicated that under absolutely no circumstances do I have blepharitis. I have microcysts under my epithelium resulting in RCE's but I DO NOT HAVE BLEPHARITIS - lets call him Dr 1.

The yesterday, I was sent to yet another Dr (claims to be a Dry Eye specialist) and he indicated that yes I most definately DO HAVE BLEPHARITIS.

Let's refer to the last DR as DR 2.

DR 1 says I should not use Sodium Chloride ointment of a night as it would compromise my already dry corneas and the last thing they need is drying out more.

DR 2 says I should use Sodium Chloride ointment to dry out the excess moisture in my corneas as it would help the microcysts to heal. He also said that I should start taking Doxy at 100mg/day for the next 6 weeks as I definately have some form of Blepharitis.

He also flushed my left bottom punctum as the plug is "missing in action" and i wanted to make sure it wasn't having a party somewhere on the way from my puncta to my lung.

I must admit, I was sick to the pit of my stomach yesterday as he took me into the treatment room (lasik room) to do the flushing and examination. I was like a naughty child in that I was almost kicking and screaming that I wasn't going anywhere near that damn laser machine that caused me so much grief in the first place.

He assured me that he was only using the bed attached to the machine and reassured me by turning the whole machine off and turning the head of it right out of my way. Equally, I assured him that if he came anywhere near me with that laser, there would be little chance he would father any children in the future.

It was a really sickening feeling.

DR 1 also said that RCE's is very common after epi-lasek, whereas DR 2 says it is almost unheard of - work that out - read your medical journal guys and educate yourself is all I can think of.

AAAAARRRRRRRGGGGGGGHHHHHHHH

Who do you believe?

Trying, really trying to keep up the enthusiasm and fight to get this under control, sometimes I win, but there seems to be more days that I am losing the battle at the moment.

Ian

Hi everyone

Just thought I would check in, have been taking a back seat a little lately, trying to get this whole thing under control.

I accidently scratched the plug out of my left eye the other day. I haven't had it put back in because I am not sure if it was making any difference. I will see how I go for another week or so before I decide what to do with it.

Currently I only have a lower plug in my right eye.

My right eye is still rubbish. I put Genteal Gel in both eyes and tape my right closed. not wanting to tempt fate but no abrasions so far (very early days) so a few more months of this - who knows, I will be on the express bus to recovery - I've bought my ticket they just keep moving the bus stop.

My eyes and lids are still very red when I wake but I haven't noticed any bumps on my lids lately, have started doing a warm/cold compress of a night before I go to bed so maybe my MG's are a little healthier - I just don't know anymore.

My Dr started me on Pilocarpine (progressively starting at 5mg/day X 7/365, then 10mg/day X 7/365 then 15mg/day X 2/12. It was his view that this should help me increase my tear film (not sure which layer or all of them) but he thinks it is worth a try.

I must admit that I am on day 9 now and feel that my eyes are quite moist (I can actually feel tears in them when I blink), but they still feel gritty a lot of the time.

I think Pilocarpine is used for Sjogrens (?sp) suffers and those that have had radium treatment for face/throat cancer, it promotes secretion production (saliva, tear film, sweat, etc), am learning to deal with side effects in the anticipation that this is going to help me.

It is recommended that you drink a lot of water to avoid dehydration but I drink loads of water anyway.

I must admit (albiet early days) but this is the first thing that I have started taking/doing that is making a small difference. Maybe it is mind over matter but at this moment in time, I don't care what it is.

I hope that if I can get the corneal abrasions under control than the dryness will sort itself out in the long run. If the Pilocarpine helps than I am grateful for it. Maybe the extra tears will help stabilise my compromised tear film.

Take care folks, sorry to bore you with the details. Just felt the need to talk about it.

Ian (Prattstar)

[DrG]

The problem with dry eye is that the more you know, the less you know.

This may seem paradoxical, but I find that the more severe the condition, the easier it is to provide relief.