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Basement membrane dystrophy AKA map dot dystrophy who here has this?

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  • #16
    Originally posted by Dowork123 View Post

    If you want I’ll get you some statistics...but from my research, diamond burr debridement has an 85% success rate. Not sure on ptk. I’m assuming that much and possibly higher. I just fear a laser hittting my eyes. That said, MGD had ptk and loved it. It stopped his erosions. So at the end if he day, you have to make the call. If I was having erosions constantly, I’d do just about anything to make them stop. I hope you post after the surgery, no matter what route you take. I’d like to see if the procedure helps. I wish you the best, erosions are horrible.
    Dowork, the affect recurring erosions have on a life is explainable to those not affected--as you know. I will definitely keep posting, either way. And I'm glad you're back on the forum, as I believe you took a needed break (which makes sense to me, also).
    EyesOpen

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    • #17
      Originally posted by EyesOpen View Post

      Dowork, the affect recurring erosions have on a life is explainable to those not affected--as you know. I will definitely keep posting, either way. And I'm glad you're back on the forum, as I believe you took a needed break (which makes sense to me, also).
      Thank you, I took a very short break. What I’m trying to do is just pop in and pop out. Not hang around reading for hours. That was killing me. I’m looking for answers I just can’t find...so it just becomes obsessive.

      I genuinely wish you the best. Yes, until I had these issues, erosions and dry eye, you could have never verbally explained this to me. I would have understood it wasn’t good, but that doesn’t do these problems justice. Painful isn’t a good description. Anyway, I hope you find a solution. You know, we are in a select group of dry eye patients that don’t get relief from sleep. That’s another issue. When your sleep is effected, things fall apart fast. So finding a good solution to the lagopthalmos is critical for you of course. Have you tried taping your eyes shut? The pressure patching never worked well for me. If it works for you, I’d do that over taping. Taping is annoying but it’s literally the only way my eyes feel decent.

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      • #18
        Originally posted by Dowork123 View Post

        Thank you, I took a very short break. What I’m trying to do is just pop in and pop out. Not hang around reading for hours. That was killing me. I’m looking for answers I just can’t find...so it just becomes obsessive.

        I genuinely wish you the best. Yes, until I had these issues, erosions and dry eye, you could have never verbally explained this to me. I would have understood it wasn’t good, but that doesn’t do these problems justice. Painful isn’t a good description. Anyway, I hope you find a solution. You know, we are in a select group of dry eye patients that don’t get relief from sleep. That’s another issue. When your sleep is effected, things fall apart fast. So finding a good solution to the lagopthalmos is critical for you of course. Have you tried taping your eyes shut? The pressure patching never worked well for me. If it works for you, I’d do that over taping. Taping is annoying but it's literally the only way my eyes feel decent.
        I find the same, Dowork--"pop in and out" so I don't obsess. And I try not to do so too close to bedtime, which can exacerbate my tension about lack of sleep.

        I have pressure-patch materials on hand, for emergency use, but I have found the best fit for me is the Onyx goggles with moistened foam inserts (from TranquelEyes). I have become enough accustomed to these that I can feel safer and relax more, which promotes SLEEP. I would love to sleep without, but may not happen, and far better than the RCES.

        I like the recent post on sealing: http://forum.dryeyezone.com/forum/dry-eye-talk-discussion-and-q-a/open-forum-patients-only/218908-sealing-eyes-while-sleeping
        Rebecca's product descriptions are quite accurate, when perusing the choices.

        There is hope for us here, I agree. Some initial, necessary concentration on research and method experimentation can be tiring, yes, however, I keep the examples before me of others who are now managing their DED and are functioning well.

        I have prayed for you, Dowork, for the same, and that's what I value in reading other's stories on this forum.
        EyesOpen

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        • #19
          Originally posted by EyesOpen View Post

          I find the same, Dowork--"pop in and out" so I don't obsess. And I try not to do so too close to bedtime, which can exacerbate my tension about lack of sleep.

          I have pressure-patch materials on hand, for emergency use, but I have found the best fit for me is the Onyx goggles with moistened foam inserts (from TranquelEyes). I have become enough accustomed to these that I can feel safer and relax more, which promotes SLEEP. I would love to sleep without, but may not happen, and far better than the RCES.

          I like the recent post on sealing: http://forum.dryeyezone.com/forum/dry-eye-talk-discussion-and-q-a/open-forum-patients-only/218908-sealing-eyes-while-sleeping
          Rebecca's product descriptions are quite accurate, when perusing the choices.

          There is hope for us here, I agree. Some initial, necessary concentration on research and method experimentation can be tiring, yes, however, I keep the examples before me of others who are now managing their DED and are functioning well.

          I have prayed for you, Dowork, for the same, and that's what I value in reading other's stories on this forum.
          Thank you for the prayers, I don’t really pray, but you will definitely be in my thoughts. You lay that foam directly on your eyes correct? That’s what I meant by “pressure patch”. I have an issue doing that although I would prefer it to taping. My eyes usually open anyway and I end up with the mask off or still on, but not protected cting me. I was so hopeful for the tranquileyes too. The onyx were too small for me. They pressed against my eyes. Been a long path I’ll tell you that. I love the bubble bandages but I’m allergic to the tape.

          I agree, there is hope. I’m much more hopeful after my last dr visit. Things have been much better lately.

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