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Story time: My first dry eye doc's malpractice

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  • Story time: My first dry eye doc's malpractice

    When I got my dry eye this winter, I eventually realized that the public healthcare was useless--apart from the stain, they had no tools. Moreover, they wanted me out of their office or simply did not have the capacity to care.

    I went on to research the local docs. A few clinics came up. One had a nice website with common triggers listed on the website along with Lipiflow available on site.
    The clinic is in the suburbs, so I had to take about 1h or even 1.15h to get there and then back. The doc seemed kind a but his spiel was pretty scripted. He talked to me about meibomian glands like I was a five year old. Oh well. I did not care. He had the osmolarity test and that's what mattered to me at the time.

    He send me on my way with a printout of my results, TBUT, osmolarity, etc. I felt good. Someone was taking me more or less seriously.

    A month later, my partner drove me to the location. Even by car it took about 40 minutes. Off I go again to do the osmolarity test and see how things are going. He tells me my osmolarity in one eye is 310 or around that, and the other is 342. "One eye is lagging behind but not too badly", he says. I get worried. This is some heavy stuff, to hear that your osmolarity is 342. The doc then adds: "It's ok, your eye will catch up, the osmolarity will increase once we get you on Xiidra".

    Increase? Stumped, I ask him: "Are you sure the higher value is better?". He goes: "Why? Yes, of course. My patients feel better once we get the values up there in the 340's". I stumble out of the office confused and alarmed.

    Keep in mind, I am the kind of person who can research things thoroughly and obsessively for hours if I am interested or out of necessity. I remembered the graphs well. Lower values are in the green. Some say 305 is the cutoff, some say 290's are even a safer bet. Either way, the lower the values the better.

    I come back to the coffee shop where my partner had been waiting for me. I tell him about my experience. He does not want to believe that this doc is a wrong and neither do I. Not settling for the google image search on dry eye osmolarity, we find the official Tear Lab handout. Of course, I am right. The lower values are in the green.

    Frustrated I come back to the office. The doc is out for lunch. The front desk staff looks at me with slight annoyance in her eyes. I wait. The doc comes back. I press him for answers. He repeats that the higher values are the better values. I show him the pdf on my phone. He lets out: "Gee, looks like you are right. I am not sure what happened, pretty sure though they taught us the higher values are better. Um, okay. Bye".

    That is it. He made no attempt to make up to me. Retest. Although I later realized his tests were wrong anyway. My values never climbed that high. I would say 316 was the highest.

    I have not done anything about it. I am not sure what I could do. I worry about his patients who feel better with 340+ osmolarity.

  • #2
    Well, I do NOT trust doctors that much any more - have paid huge/enough price = many glands are gone &
    hard to work again even eyes are manageable now - despite of the fact that
    I have NEVER stopped visiting doctors due to RC erosion for some years. All 8 doctors just recommended ointment, NO lid hygiene - which blocked glands. Not until 4 years ago did doctors finally detect dry eye (not even MGD) but only recommended drops (no oil-based) = NO treatment. Not until 2 years ago finally a decent dr told me, ''Sorry, can not help you'', on the 2nd visit (= wasted 6 months). Since then I have started my own research. Only one dr prescribed me doxy 100mg/day (to thin the oil) last year which I took 4 weeks. Almost none mentioned omega 3. To save glands, I did LipiFlow - which helped about 65%.

    2 hospitals even did schirmer incorrectly - should be at the end not at the beginning. One dr Dr said no oil came out when she expressed glands, when I requested. 'Would it be because of the schirmer test,'' I asked. ''Possible,'' she answered and did not charge me money. One dr said my glands were great and no need to do warm compress, a few weeks later, another doctor said I should continue.

    My Lessons
    Educate myself & learn/explore NEW things are more practial - that is how I have improved my condition - for one year, particularly since I have found the pure HOCL lid spray, NatraSan (Avenova alternative, on 3rd attempt though - yet all +10 doctors said I did not have inflammation) + omega 3/GLA and mastering warm compress (constant/wet heat, 44C,15 min). Only about 25% doctors mentioned (10 min.) compress - with no details which was useless. One dr mentioned 45C on the 2nd visit (= 5 months later) but I already figured it out by myself then (with lot of research/experiments).

    If I were a doctor, I would feel rewarding if my patients and I achieve sucess/results otherwise I feel I am useless. I would offer a to-do list explaining how to make warm compress works, lid hygiene (with tea tree oil), etc. Small effort but makes a huge difference.

    Even kids aged 4 display gland atrophy, study shows (see #5 below). When one feels eyes dry/discomfort, mostly already at moderate level yet most doctors just send us away with drops. Why they are allowed to do so??
    They should stop progression otherwise our glands atrophy, right?

    Lastly, dry eye is more than affecting quality of life - could be NO life!!
    So unfair is first doctors do not detect/treat early/properly, later WE pay expensive treatments in order to stop progression.
    You are lucky if can still work as with income you can afford the expensive treatments. How about whose who are not able to??
    Last edited by MGD1701; 26-Aug-2018, 09:57.

    Comment


    • #3
      MGD1701 definitely! I did my exam 1.5 years before the dry eye began. They test for vision and glaucoma but never for the dry eye.

      I watched Dr Korbís presentation and he mentioned structuring the eyes are the same way as dentist. For instance, a technician would do expression, IPL, etc. the patient will be seen weekly, monthly, yearly, depending on the symptoms.

      I think right now the docs address dry eye as a single treatment-based disease. However, many likely will need treatments every few months depending on their condition. People donít only go to dentist once when they have a cavity. Rather they come back every 5-6 months to be checked and seen by both the doc and the hygienist.

      I am curious about children and MDG. Where did you see that info? It makes sense but I am curious to read the story.

      Comment


      • #4
        That osmolarity thing is terrifying. I think the reality is ophthalmologists arent the high flyers of doctors. Its about the easiest subject to become a doctor honestly. I know more now about dry eye than every doctor ive seen. I could probably learn the same about glaucoma or other issues.

        I have to ask doctors to press on my glands every time. It takes 10 seconds but they dont do it. Their certification should be taken away.

        The dry eye expert in my area said blood serum drops are very helpful. I said, all my glands are blocked. This is just treating symptoms. Long pause. She had no idea that Lipiflow or IPL would help.

        Comment


        • #5
          Hi Hopeful-hiker,

          here is that report from Ocular Surgery News U.S. Edition, August 10, 2018

          ''The prevalence of dry eye disease and meibomian gland atrophy is appearing more frequently in a younger population, according to OSN Cornea/External Disease Board Member Preeya K. Gupta, MD. Gupta and colleagues published a study in Cornea reporting that

          42% of pediatric patients between the ages of 4 and 17 years exhibited evidence of meibomian gland atrophy.

          ďThis process is starting earlier, and whether itís lifestyle, diet or who knows what, even our rising generation is experiencing this. Itís going to be ever prevalent.

          Every clinician out there should know whatís available, and whether you personally choose to treat these patients or refer them out, you should offer your patients interventions for their disease earlier.
          It becomes more difficult to treat as time goes on,Ē Gupta said.''

          I only keep the text not the link but can be easily found, if one wants to read more.
          ------------------------------------------

          Dr. Epitropoulos: In my practice, the average patient with moderate to advanced dry eye has seen eight or nine eyecare practitioners. In fact, itís the number one reason they left their previous eyecare practitioner; they didnít have a therapeutic relationship. When we finally diagnose them, make that connection, and really educate patients about the disease, it goes a long way.

          from
          https://www.linkedin.com/pulse/under...n-epitropoulos
          Last edited by MGD1701; 16-Aug-2018, 06:59.

          Comment


          • #6
            It's a really interesting area of medicine. There are a LOT of factors that conspire to make specialty knowledge in dry eye relatively rare. It's easy to just get angry with all the doctors for not knowing, and wondering why we know more than them about some things... but we have to remember that they work within a lot of constraints too and there are SO many eye diseases they have to know about. Even amongst corneal specialist ophthalmologists, relatively few will be familiar with even the diagnostic guidelines set out in TFOS DEWS II, let alone the minutiae, let alone all the treatment possibliities, let alone the whole symptom side of things that we all struggle with. - With general ophthalmologists, the problem's just grossly magnified because they're dealing with the whole eye.

            Having said that.... re your doc... obviously, you need to know which end is up before you employ a diagnostic tool of any kind. Shame on him, and obviously a reason to move on to the proverbial eighth or ninth. Sigh!
            Rebecca Petris
            The Dry Eye Zone

            Comment


            • #7
              So far I know only two World Famous Professors, Dr Eric Donnenfeld and Dr Korb
              publicly (strongly) consider if it is NOT ok/right to send away patients with drops
              when they asked other doctors in two different eduational workshops.


              Prof. Donnenfeld detects each patient with Lipiscan for free - what a smart and decent doctor.
              He has MGD maybe that is why. He has a great sense of humor too.
              Last edited by MGD1701; 24-Aug-2018, 05:33.

              Comment


              • #8
                hopeful_hiker , that was certainly a frustrating experience. It likely will not be your last.

                Earlier this year I was using the computer more regularly for a few weeks, and my eyes got drier. When I went to see my dry eye specialist/probe doctor to check my glands, she instead said she would put me back on serum tears, without checking my glands. I asked again if she could check my glands, to determine whether I might need another probing at some point, and she said just try the serum tears again. She said she does not want to do probing too much because it is still relatively new and very invasive and the long term effects of the procedure are not known (which I canít disagree), but still she should have checked my glands. I was quite disappointed with her, as she is very skilled at probing which helped me, and she knows I have a history of severe MGD, so why wouldnít she always check my glands at my check ups, especially if I have more dryness than usual? So needless to say, even I am looking for another dry eye specialist now, when I thought I had a decent one!

                Comment


                • #9
                  Hi Hokucat, good idea.
                  I would find a dr with a confocal microscopy to examine gland density, fibrosis etc.
                  Have you done such test? if so, lucky you. Good luck!
                  Last edited by MGD1701; 20-Aug-2018, 09:17.

                  Comment


                  • #10
                    Originally posted by Hokucat View Post
                    hopeful_hiker , that was certainly a frustrating experience. It likely will not be your last.

                    Earlier this year I was using the computer more regularly for a few weeks, and my eyes got drier. When I went to see my dry eye specialist/probe doctor to check my glands, she instead said she would put me back on serum tears, without checking my glands. I asked again if she could check my glands, to determine whether I might need another probing at some point, and she said just try the serum tears again. She said she does not want to do probing too much because it is still relatively new and very invasive and the long term effects of the procedure are not known (which I canít disagree), but still she should have checked my glands. I was quite disappointed with her, as she is very skilled at probing which helped me, and she knows I have a history of severe MGD, so why wouldnít she always check my glands at my check ups, especially if I have more dryness than usual? So needless to say, even I am looking for another dry eye specialist now, when I thought I had a decent one!
                    Im not defending your doc, I agree, she should have looked at your glands. That said, I'm assuming she didn't because no matter what she saw, she felt she shouldn't continue treating you, so why look. It's the only thing that makes sense based on her comments. She said she wouldn't probe again, so if she saw your glands were bad, it wouldn't change her treatment. So she said, go back on serum, safe, effective and will hold you over until you are in desperate need of probing again.

                    Again, not defending her, just going through her thought process. I think she should have looked especially if you asked her to. But let me also ask, what would you have wanted her to do? Do you feel you needed a treatment?

                    im asking only because I'm curious when do we stop doing procedures? When do we know we need one and should go to another doc? This is one of the hardest questions for me to answer. When is it too much, when is it not enough.

                    Comment


                    • #11
                      Dowork123 , I just wanted to know the status of my glands, if they were starting to get blocked up again, pure and simple. I have not had a probe for three years now, and it is indeed such an invasive and uncomfortable procedure, I would not have another one again unless I was really bad off. I have had other issues with her as well, so if I donít feel Iím getting the attention I need anymore, of course Iím going to to look for another doctor. I know a lot more than I used to, so checking the status of my glands early is important to me.

                      Comment


                      • #12
                        Originally posted by Hokucat View Post
                        Dowork123 , I just wanted to know the status of my glands, if they were starting to get blocked up again, pure and simple. I have not had a probe for three years now, and it is indeed such an invasive and uncomfortable procedure, I would not have another one again unless I was really bad off. I have had other issues with her as well, so if I donít feel Iím getting the attention I need anymore, of course Iím going to to look for another doctor. I know a lot more than I used to, so checking the status of my glands early is important to me.
                        I agree, especially if you ask. I think that's a huge failure...I'm still working with different doctors because they all offer a different perspective. Looks like it's my thyroid..so I'm glad I kept pushing. There were a few times family members told me to stop. So I was just curious what your take was on pushing for better care.

                        Comment


                        • #13
                          Getting different perspectives from different doctors is valuable, including different types of doctors like nauturopaths, rheumatologists, etc. I learned something from almost every doctor I saw. If your condition is not getting resolved, definitely continue to seek other treatment options and/or specialists for your condition or what leads you have on what your underlying condition might be. If I didnít do that, I would still today be suffering at the debilitating level I was at for many years.

                          When I had tried just about everything, and all the doctors I saw said there was nothing else they could do for me, I asked my main doctor to refer/bless me for a probing consult. He had never heard of it, so I brought him info to educate him, as it is important at least my main eye doctor understand why Iím pursuing a certain treatment he may not provide, plus he might need to work with the different specialists I see. Probing was still a VERY new procedure back then, and few doctors did it, but based on everything I had tried and looking back at my condition getting worse and worse over the years, I suspected (or should say was hoping) my glands were blocked with scar tissue, or otherwise not producing oil any more. I did all the research myself on probing and found the probe doctor myself. Probing turned out to be the key first step to helping my condition, since it turned out I did indeed have deep scar tissue in many of my glands that no other treatment or procedure could unblock. And it did take several probe procedures before I found the diet changes that helped my oils flow better and not get blocked again. So sometimes the same procedure does need to be repeated, especially in conjunction with something else, in my case, the second key step of the right diet changes.

                          Comment


                          • #14
                            I think to examine glands during each visit is very basis and humble request.

                            A few top leaders in USA mentioned many doctors do NOT even know
                            visual flucuations (= unstable tear film) = a sign of dry eye/MGD.

                            Comment


                            • #15
                              Hi Mgd 1u01 and Hokucat...you both are very knowledgeable and a great asset to this site. I am interested in the effectiveness of Natrasan ....diet and what is the best warm compress you have learnt to adapt after many years of research. I live I the UK and probing is unheard of so any advice will be greatly appreciated.

                              Comment

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