Been told I dont have Dry Eye????????

[autumnn]

I recently went to the head of a major eye treatment facility and was told that I dont have "dry eye" (lubricating drops have never helped one bit- so not having dry eye makes sense to me). He also looked at my lids and thought that there arent issues with blepharitis/MGD. He seemed stumped as to what was causing my pain. He noticed conjunctivochalasis but said that it was not my problem, that it doesnt cause pain (which I know is not true for many people). He gave me a bandage lens to try (it didnt help).

So on to a different doctor's opinion- a well known corneal specialist that found the conjunctivochalasis stated he saw "mild" symptoms of dry eye but nothing that correlated with the amount of pain I am in. He too thought my lids looked good. He thought the conjunctivochalasis could be the culprit of my inflammation and pain. My main symptom is burning- this is often the case with conjunctivochalasis.

Dry eyes? I don't know now. In general my TBUT is between an 8-10 (though I have been known to score a 5 now and then in my more painful eye), I am told I dont have an aqueous problem. Still, my optometrist believes I have MGD and evaporative dry eye- he doesnt believe conjunctivochalasis is my problem.

So, do I have "Dry Eye" or not!!!!!??????? And, what to do now after I have religiously tried everything without symptom relief?

At this point I am leaning toward the corneal specialist and his thought that the conjunctivochalasis surgery has a "reasonable likelihood of improving symptoms"......I am not thrilled with only a "reasonable likelihood" but at this point I have to try something. I am scheduled for January 28th. I am crossing all my fingers that this will help.

Still, I am so confused- dry eye or not? Surgery or not? I will keep you all posted but I am so confused. Any one else have this problem?

[sazy123]

I wouldnt assume you dont have dry eye because one physician told you.

Ive been told by some that i dont have dry eye, or i do but its mild- this is on the basis that my eyes actually look really moist, and i produce a normal amount of tears. But 'mild' does not correlate with how they feel- they feel moderate to severe!! I have no oil layer due to inflammation of my eyelids, and my tears are really thin, you can tell if you have dry eye by how glossy your eyes look. If they look watery and pool at the bottom- usually means you have MGD.

If your Mglands arent obviously blocked do you have inflammation?

A TBUT of 8-10 is dry or borderline and if its been 5 before thats pretty telling that its probably MGD. Unfortunately some doctors dont know how to recognise MGD if theres no blockage they just assume you dont have it.

What do you think the cause is?

[Lucy]

"......I am not thrilled with only a "reasonable likelihood" but at this point I have to try something. I am scheduled for January 28th. I am crossing all my fingers that this will help.

Hi Autumnn,
You say that "at this point, I have to try something." This is not true. I know you feel that you are at the end of your rope and anything is worth trying. Being on dry eye boards for 9 years, I've seen many people's dry eye go away by itself and they never knew why.

Please don't feel that you MUST TRY SOMETHING. That is not true, and especially since you'd have the same option at a later time. I'm looking at what your doctor says about the conjunctivochalasis could be the culprit of my inflammation and pain. I think I'd want a little more positive attitude on his part.

Autumnn, we all wish you well whether you do the surgery or not. I'm just trying to put the thought here that you absolutely do not have to do anything RIGHT NOW.

Many of us with bad laser surgeries have gone into more surgery just because they felt they had to do something RIGHT THEN and sometimes the results made things worse. Just please go with your gutt on this. From your posts, you sound reluctant. Whatever you do, we're all here to support you. You are a brave young lady. Hugs......Lucy

[autumnn]

Sazy- I have no idea what the cause is- I am guessing MGD but the constant burning makes me wonder about conjunctivochalasis or even if having plugs is the problem (delayed tear clearance?)....My TBUT went up after getting plugs- all the way to a 10 in one eye and an 8 in the other...yet, with the increase I felt no different in symptoms. And, the inflammation persists.
Lucy thank you so much for your kind words and wisdom. I know I am not the only one on this forum who feels that they cannot live another day like this. It has been years since I have had a day that I did not struggle to get through and I am ready for this to end......I know that surgery may not be an answer but heck, I'll try anything now. I'd love for the pain to spontaneously go away but I fear that will never happen. And, what if my "prounounced chalasis" is the underlying problem? I will never know until I get the surgery....I wish we all werent in this situation- this pain- it is really a lot to ask someone to deal with.

[alisonW]

Hi Autumn,

Is it possible that you have ocular rosacea (you can have it before any facial symptoms appear)? I ask becuase, like you, my eyes are almost always inflamed and/or burning and I've been told it's due to Ocular Rosacea. (This condition can exacerbate any dryness issues too.)

[autumnn]

Hi Alison- I dont know....how do you treat occular rosacea?

[alisonW]

Well...

for me that's the million dollar question. I've been told that getting facial symptoms under control will help the eyes but my eyes are much worse then my face, which is rarely, if ever flushed. All the docs I've seen just prescribe the usual OTC preservative-free drops, lid hygiene & compresses, and the occasional use of steroid drops. I have a friend with OR and Restasis worked well for her but I used it for two years with little to no improvement. Same goes for a low dose of doxyclycline - didn't help at all.

Sorry I have no real ideas for significant relief --I think that's one of the worst things about OR --nothing really helps except "avoiding triggers" which is impossible for many people (like myself) since things like stress, flourescent lights, wind, sun, and some foods can all be triggers.

[sazy123]

Sazy- I have no idea what the cause is- I am guessing MGD but the constant burning makes me wonder about conjunctivochalasis or even if having plugs is the problem (delayed tear clearance?)....My TBUT went up after getting plugs- all the way to a 10 in one eye and an 8 in the other...yet, with the increase I felt no different in symptoms. And, the inflammation persists.
Lucy thank you so much for your kind words and wisdom. I know I am not the only one on this forum who feels that they cannot live another day like this. It has been years since I have had a day that I did not struggle to get through and I am ready for this to end......I know that surgery may not be an answer but heck, I'll try anything now. I'd love for the pain to spontaneously go away but I fear that will never happen. And, what if my "prounounced chalasis" is the underlying problem? I will never know until I get the surgery....I wish we all werent in this situation- this pain- it is really a lot to ask someone to deal with.

I feel no difference in symptoms after getting plugs, pure evaporative dry eye rarely does. I want to get mine out ive had them in four years, but i think they are just adding to the inflammation and maybe the burning.

It could even made them worse, but i dont know.

I have burning with my MGD, i think one gets burning when the eye surface is not protected with enough/quality of tears so it wouldn't necessarily be the conjunctivochalasis. But if you consider that to be bad enough i would look in to it. If its only mild, it prob wont be causing the symptoms.

Think back to when it first occurred or your history of dry eye symptoms. Can you pin point it to anything else or just this conjunctivochalasis?

How significant have the doctors said it is?

I completely get the wanting to try something. Im not willing to except that i have to live with this- its impossible to live with at my age. Ive lived with other things i.e face pain- SO much easier!

[sazy123]

for me that's the million dollar question. I've been told that getting facial symptoms under control will help the eyes but my eyes are much worse then my face, which is rarely, if ever flushed. All the docs I've seen just prescribe the usual OTC preservative-free drops, lid hygiene & compresses, and the occasional use of steroid drops. I have a friend with OR and Restasis worked well for her but I used it for two years with little to no improvement. Same goes for a low dose of doxyclycline - didn't help at all.

Sorry I have no real ideas for significant relief --I think that's one of the worst things about OR --nothing really helps except "avoiding triggers" which is impossible for many people (like myself) since things like stress, flourescent lights, wind, sun, and some foods can all be triggers.

Hi alison, you sound in similar position to me. I have what is most probably ocular rosacea, although allergies could be in the picture- although i doubt this because i have tried everything!

I have also tried everything for ocular rosacea- such as doxy, restasis, fish oil etc and no luck! Triggers dont make a difference either- the inflammation is there no matter what.

Like yours my face is not bad at all, very mild.

What are your clinical signs of OR? inflamed eyes/eyelids or both? do you have blocked glands?

I have normal white eyes, but inflamed eyelids. I sometimes wonder if i just have damage to my lids and thats why nothing works.

[calli66]

Autumn,

I found this website here about conjuntivochalasis---have you read this before? Probably have.

I never paid much attention to this term in the past, but I recently got a copy of the eye doctor's written notes (from last year)--and he used this term. Never said anything to me about it, but now I'm trying to understand it better.

Do your symptoms match those described on that website?

My own symptoms pretty much match the ones for dry eye, except that plugs make my eyes worse.

Calli

[alisonW]

Hi sazy123,

It's mainly my eyes that are inflamed & red. I hate it because they always look so bad regardless of how they feel. (Occassionally my eyelids are too but not nearly as often.) I'm not sure if my glands are blocked or not. None of the docs I've seen have ever told me that they were though. I really need to go armed with a list of questions for my next appointment -- I know a lot less of the specifics regarding my dry eye then most of you do.

[autumnn]

Hi Cali- Yes, I have read that...thanks for the link though. What I find interesting about that site is that it states that mild conjunct. can cause dry eyes and tear film instability. I have been told that it can also cause blepharitis and inflammation.
Sazy I have no idea what triggered this. In the past it has gone away on its own when I have given up on internet searches, eye docs, and stopped doing any eye treatments. Of course I tried that this time but it didnt go away.
All that seems to work is steroid ointment on the eye lid margin- and, this I am sure is not good long term.
I am so sick of seeing doctors but tomorrow I am seeing a dermatologist to rule out occular rosacea....

[jlg_uk]

Hi Alison

I would suggest moisture goggles. If you use these and they help, this pretty much proves dry eye (either aqueous or evaporative). They can be a little pricey, but cheap onion goggles can good be a good cheap starting point.

Do you find some environments make your eyes worse (A/C etc)? Again, this would suggest DES.

Good luck.

[autumnn]

I find that I have burning and a stinging feeling all of the time- AC or no AC- protective glasses or no protective glasses.

I went to a dermatologist yesterday and he told me that I have facial rosacea. ....I have no obvious symptoms but am now AGAIN so confused! Does this diagnosis change the way I handle my eyes? I am sorry for the super confusing post. I will read up more but wanted to ask anyway.
thank you