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  • #16
    Originally posted by Jack View Post

    WellEyes, I would not call my problem "pain" so much as an "irritation", that takes several distinctly diff forms, wach of which comes and goes in severity. But I can always, alwasy, feel something, and so I'm in a constant state of frustration.
    I know exactly what you mean. In my case it is this irritation (I call this a "constant and unpleasant awareness of the eye) which builds up until the eyes will get really tired at one point and start burning in addition. It is almost as if the eye was covered with a blanket or something. It never stops, just changes in the level of severity depending on the stimuli (air conditioning, light, wind, or simply the fact that the eyes are open)

    I'm not a doctor obviously but out of experience and from what I understand from you, it seems you have some issues with the nerves or damaged tissues affecting the eye area. This doesn't mean you don't have dry eye at all but probably not to the level that you're feeling the symptoms. I mean people with the same degree of dry eye like me (mild) usually live perfectly fine with artificial tears twice a day. We should NOT be feeling this frustrated according to the clinical eye exam.

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    • #17
      Jack
      That outer corner is very very rounded, and exposes much more of my eye than normal. Two doctors have told me I might want to try a small terrsorhaphy because that roundedness might in fact be the cause of my problem.
      Oooh that's a nice big fat clue. If this is essentially an exposure problem, well, you can try and improve the symptoms with all the conventional and unconventional dry eye stuff but at the end of the day you still have an exposure problem... conceptually the fixes are either altering the eyelid structure in some way or getting something besides the eyelid itself to cover the problematic part of the cornea & conj (eg PROSE in fact if you were still in LA I would be thinking of Gloria Chu at USC). Much as I abominate tarsorrhaphy I wonder if you might be one of the people it's actually a good idea for.

      Agree about Lipiview though I think a good cornea doc ought to be able to shed some light even without. The oculoplastic folks, no matter how good, are much more limited in their assessment of the cornea - but at the same time, even among the cornea docs, not too many understand this stuff if the level of symptoms/irritation outstrips their clinical findings too far.
      Rebecca Petris
      The Dry Eye Foundation
      dryeyefoundation.org
      800-484-0244

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      • #18
        Originally posted by Rebecca Petris View Post
        Jack

        Oooh that's a nice big fat clue. If this is essentially an exposure problem, well, you can try and improve the symptoms with all the conventional and unconventional dry eye stuff but at the end of the day you still have an exposure problem... conceptually the fixes are either altering the eyelid structure in some way or getting something besides the eyelid itself to cover the problematic part of the cornea & conj (eg PROSE in fact if you were still in LA I would be thinking of Gloria Chu at USC). Much as I abominate tarsorrhaphy I wonder if you might be one of the people it's actually a good idea for.

        Agree about Lipiview though I think a good cornea doc ought to be able to shed some light even without. The oculoplastic folks, no matter how good, are much more limited in their assessment of the cornea - but at the same time, even among the cornea docs, not too many understand this stuff if the level of symptoms/irritation outstrips their clinical findings too far.

        Many thanks Rebecca, that was helpful. As I live in Asia (Bali) if you happen to know of any good cornea doctors in Singapore/Thailand/Malaysia I might plan to see one. Thanks again.

        Btw, do you think an exposure problem could cause varying, multiple symptoms, that come and go individually? Cheers

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        • #19
          Originally posted by Jack View Post
          Btw, do you think an exposure problem could cause varying, multiple symptoms, that come and go individually? Cheers
          Symptom variability is a hallmark of all different kinds of dry eye IMO, including exposure
          Rebecca Petris
          The Dry Eye Foundation
          dryeyefoundation.org
          800-484-0244

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          • #20
            Originally posted by Rebecca Petris View Post

            Symptom variability is a hallmark of all different kinds of dry eye IMO, including exposure
            Thanks Rebecca. Your comments have been useful and helpful.

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            • #21
              Originally posted by Rebecca Petris View Post
              Hi Jack, Welcome!


              What kind of doctors and what have they diagnosed you with?

              Corneal specialist ophthalmologist - one that works more with disease than, say, LASIK and cataract - would be the best equipped type of doctor to get you a more detailed diagnosis. However, it's not at all unusual for people with dry eye to get variations in their diagnosis with every specialist that they visit. This is definitely not as simple as going to the world's expert. There's a lot of experts, and some of them are tuned more to one issue than another. Echoing epicjinx... geographic clues would help with ideas.

              Rebecca, I need a recomendation for a doctor. The forum has so much information I am getting confused doing a search here. I still don't feel I have seen a doctor who has accurately diagnosed me. I live in Indonesia, am in Hawaii right now, but can fly to any city in the USA for free. (Part of a United employee's family deal). Whom should I see? Is there anybody in LA, or Hawaii, or elsewhere in the Western part of the USA that you would recommend? I also sent you a PM with a bit more information....Many thanks.
              Last edited by Jack; 24-Feb-2019, 12:52.

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              • #22
                Sorry I missed this! Pm'd you my phone!
                Rebecca Petris
                The Dry Eye Foundation
                dryeyefoundation.org
                800-484-0244

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                • #23
                  Originally posted by Rebecca Petris View Post
                  Sorry I missed this! Pm'd you my phone!
                  Got it and PM'd you back, many thanks!

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