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Anyone with Salzmann's Nodular Corneal Dystrophy?

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  • Anyone with Salzmann's Nodular Corneal Dystrophy?

    Hello,

    I've recently been diagnosed with a second recurrence of Salzmann's nodular corneal dystrophy (SNCD) which is significantly affecting my vision, symptoms of dry eye and foreign body sensation. Artificial tears provide little or no relief for the symptoms.

    The first "round" of SNCD was treated with superficial keratectomy and mitomycin-C. It lasted several years before regenerating and now eyeglasses are unable to correct my vision. The cornea specialist has provided options (do nothing, try contact lenses, or another round of surgery). Since I'm in the 10% of patients who were not "cured" with the first surgery, it's likely the nodules will regenerate within a range of anywhere from as soon as 12 months up to ten or more years.

    I'm hoping there may be someone willing to share their stories. Has anyone had superficial keratectomy with excimer laser and mitomycin-c with good success in terms of improved vision? Has this procedure had any impact (good or bad) on dry eye post-op?

    Thank you,
    Blinks

  • #2
    Hi Blinks,

    I have Salzmann's nodules on the edges of my corneas - both eyes. I am hoping maybe you can give me some input. It will be much appreciated!

    I am scheduled to have a superfical keratectomy with BCTL & Diamond Burr Polish on my left eye on Jan. 16th because of Salzmann's nodules on the edges of my corneas. (I also have the same thing on my right eye (plus a pterygium on that eye.) These nodules affect my vision (cannot drive at night due to all the glare - thought that would go away after I had both cataracts removed, but it didn't really help), and it does cause discomfort and dry eye.

    I am also scheduled to have the keratectomy surgery (without BCTL and DBP) on the other eye Jan. 30th (about two and a half weeks after the first eye.) I originally thought I might as well get it all done as soon as possible and be done with it. But now I' wondering if that was a wise decision or not. Any thoughts on that???

    I'm thankful I ran across this site because it has already been a great help just reading what to expect during and after the keratectomy and people's experience with the contact lens bandage. I have had these nodules since about 1990. Original diagnosis was corneal dystrophy. Both eyes had "scarring" on the edges of my corneas in an identical "horseshoe" shape on both eyes. I used to wear hard semi-permeable contacts - often for many more hours a day than I should have, so I assumed that was what had caused the "corneal dystrophy."

    Then when I finally saw a corneal specialist, she diagnosed my condition as Salzmann's nodules. I was routinely seen about every 4 months for years and the horseshoe pattern of nodules has remained the same that entire time. But now it is causing dry eye and discomfort, plus affecting my vision. So down this new road of keratectomies I go. Any advice you could give me on anything I've mentioned here would be most welcome because I have NO clue about any of this stuff!

    I had cataract surgery on both eyes a few years back with no complications. I thought those surgeries would get rid of the severe problem I have with glare when night driving, but no. I only drive after dark when I absolutely have to and it is an area I am very familiar with. I'm realy hoping the keratectomies will improve the night vision, but the doctor didn't think it would make a significant difference.

    Gotta run. Thanks for any input you can give me! Look forward to hearing back from you and others.
    Thanks,
    Jo

    Comment


    • #3
      Blinks,

      I am just starting down the path to treatment for my Salzmann's nodules, so I have way more questions than answers at this point.
      So sorry you've had recurrence of SNCD and eyeglasses no longer correct your vision. That has to be discouraging, frustrating, and maybe even a little scary.

      Have you, or are you, going to try wearing contacts? It makes sense that wearing contacts should help your vision since the contact applies pressure which flattens out the corneal lens, thus changing your vision. But I would think wearing contacts with this condition would be pretty uncomfortable.
      And I would think the contact lenses would cause even more irritation and more dry eye, although if they gave you better vision maybe it would be worth trying??? As a young adult I wore hard contact lenses for a lot more hours than I should have on a regular basis. So I tend to wonder if that caused my nodules. Perhaps that had nothing to do with it and I would have gotten them anyhow.

      Speaking of eye glasses, I know having these back-to-back keratectomies is going to mean I'll have to get new glasses and new reading glasses. How long after a keratectomy before you can order new glasses? How long does it take for your vision to stabilize after surgery? Is your vision severely impaired in the meantime? I have no idea how all that is going to turn out and I am a little concerned. I don't really want to be stuck not able to drive for 6-8 weeks! How soon after surgery will I be able to read and watch TV? I was thinking if the keratectomy improves my vision enough, perhaps I can just pop out the lens on that side of my eye glass frame until I get my other eye done (2 1/2 weeks after the first one), and then once the second eye is healed, I can get an eye exam and new glasses. Please let me know what your experience has been in this regard.

      All the best to you, Blinks, and everyone else!

      Comment


      • #4
        Hi Jo,
        Sorry you're going through this, but it's nice to "meet" someone with this diagnosis.

        I think the short "answer" on the wait for glasses is: it depends.

        So yes, more recently, since the second recurrence, I've tried contacts, while trying to defer surgery as long as possible due to other complications with a failed cataract surgery in 2011.

        I've tried gas permeables, piggybacks with GPs, hybrids, (all failed) and now am in the fitting process for sclerals. The sclerals are still a work in progress, but comfort-wise are far better than the others, after a couple of weeks in them.

        After the first superficial keratectomies 10 years ago, eyeglasses worked fine and my vision was excellent - It was just like having "new eyes". I was thrilled! Night driving was possible again and there was a Huge Improvement in quality of life, independence, and the dry eye improved significantly. Since it was ten years ago, I don't remember how long I had to wait for the glasses prescription, but I could see there were no starbursts within 24 hours of the surgery, even with the bandage contact lens (no prescription in that). I'll send you a PM shortly.

        I think your strategy to pop out a lens might work beautifully.

        Best wishes,
        Blinks

        Comment


        • #5
          Blinks - Thanks for your quick reply!

          If you PM'd me, will I get an e-mail stating I have a private message from you? I am fairly new to forums and threads, plus I am NOT computer savvy, so forgive me if you sent me the PM and I haven't located it yet.

          That is great news that you had excellent vision after your initial keratectomies. Even better that you weren't seeing starbursts anymore with night driving! If that happens for me, I will be extremely happy!!

          Sorry your cataract surgery was not successful. That sucks. I was fortunate to have good results with both of my cataract surgeries. For the first one my surgeon did the typical numbing shots around the eye, plus a little IV sedation.
          I was so comfortable I dozed off during surgery. The bad thing is I tend to twitch or jerk in my sleep, and I ended up doing that during the surgery. Fortunately everything turned out OK. For the second cataract, I did not want any sedation because I didn't want to be jerking again. The surgeon said she didn't even have to do the numbing shots around the eye; she just gave me numbing eye drops. That worked fine as far as not feeling anything she was doing during surgery, but looking at that bright microscope light was like torture!! Did you experience anything like that?

          My surgeon said since the keratectomies only involve the surface of the eye, she will just use the numbing eye drops and no sedation again. I do NOT look forward to looking at that bright microscope light again!!! Just hope the surgery will be over with quickly.

          I'll sign off and see if I can find your PM. Thanks for sharing your knowledge and experience with me!

          Comment


          • #6
            Hello both
            Im after a little advice as I seem to be the only person in New Zealand with Salzmann's nodules and very few of the surgeons here have any up to date and new info. I had a superficial Keratectomy in August 2012 on my Left eye as the cornea was becoming damaged. I have minimal vision from my Right eye due to a congenital defect so the surgery to my one useful eye was incredibly!!!! stressful. I used a contact band aid for 2 weeks post op which reduced the irritation.
            6 weeks post op I tested for my vastly improved vision and purchased new lenses for glasses and sun glasses. I too had much improved night time vision without too much of the starbursts but that has also deteriorated recently
            I realised recently that my reading/close vision was not so good anymore and on re-testing discovered a rapidly growing Pterygium which only occurred post-op and I now have to have more surgery on my only useful eye again!!! The surgeon is also going to remove a few remaining nodules and will also use a conjunctiva graft to cover the hole.
            My question is about postop recovery from second eye surgery (any hints) and whether there are any articles about Pterygium resulting after eye surgery?
            Thanks from "downunder" - Sue

            Comment


            • #7
              Hi everyone. I am a 35 year old male from Melbourne, Australia. Approx 1 year ago I was diagnosed with Salzmann's Nodular degeneration. I am booked in for an operation in approx 1 month but I am not certain about going ahead because noone has been able to diagnose my condition with 100% certainty.

              A bit of background about me and my condition;

              - I started wearing glasses when I was 6 years old for shortsightedness, otherwise perfectly healthy eyes.
              - Started wearing disposable (daily) contact lens in 1996.
              - In 1997, I noticed a very small dot on my right eye, on the cornea, about the size of half a grain of rice. Had it examined but nobody was able to tell me what it was - they asked me to see if there are any changes to it over the years.
              - In 2004, due to tired, red and persistent irritated eyes, I stopped wearing contact lens completely (The white dot I noticed in 1997 was now the size of a grain of rice)
              - In 2009, I noticed the white patch, was now starting to form a small curve shape, and had grown to 1.5 lengths of a grain of rice, on the right cornea, underneath the pupil.
              - In 2011, I noticed that the small curve from 2009 has now grown into a white half circle, half ring shape, from approx 3 'oclock to 9 o clock, in a horseshoe shape on the bottom of my right eye.
              - In 2012 an eye specialist diagnosed me with Salzmann's (although he wasn't 100%) and recommended to operate on it within a year to remove it, and warned that this may come back after the operation.
              - In 2013, I have seen 5 different eye specialists, none of whom were able to say with 100% certainty what my condition is. They have advised me AGAINST surgery at this stage, as I still have perfect vision in the affected eye.

              This white patch / scar is gradually causing more and more discomfort, and 99% of the time I have a feeling that something is in my eye, because every time I blink, my eyelids go over this white 'bump' and it has this foreign body sensation. It gets worse if I am tired, and especially on cold, windy and dry days, or if I am using the heather at home.

              In addition to this, approximately 6 months ago I started dry eyes in BOTH eyes, which have improved a little since I have made some healthy dietary changes.

              I am mainly concerned about the white 'scar' on my right eye getting bigger, I am now more and more conscious of it it is more noticeable.

              I am also concerned about the operation and the associated risks, and I am also concerned about going blind due to the complications with the operation (I have no idea if this is even a risk - I usually overthink things and get scared easily)

              The last specialist I went to see (different person to the one who wants to operate) recommended that I take steroid drops (FLAREX 0.1%) for 6 months to see if the white scar is related to an infection and this will hopefully reduce or 'cure' the scar.

              I tried FLAREX for 1 week and my eye pressure went up to considerably, at which stage I was asked to stop using it as long term high eye pressure can lead to blindness.

              I went back to see another specialist, who asked for me to continue using FLAREX, but use it together with an eye pressure reducing
              eye drop, and use these daily for 6 months (and to go back for a checkup after 2 weeks to see if pressure is increasing or stable)

              I have not started either of these drops yet as I am concerned about making my condition worse, and concerned about the FLAREX raising my eye pressure and making me blind.

              I now seem to be left with 3 options;

              1) Have operation to remove white scar (To be performed by the specialist who diagnosed me with Salzmann's - though he is not 100% certain that it is Salzmann's but its the closest thing he can think of)
              2) Use FLAREX and TENOPT for 6 months
              3) Do nothing and do my own research (This is the stage I'm up to now)

              Any advice would be really appreciated.

              I will be uploading photos very shortly.

              Thank you
              Mark

              Comment


              • #8
                Hi Mark7777,
                I just send you a private message. After logging in, you can find private messages by clicking on "Notifications" at the top of the page.
                Blinks

                Comment


                • #9
                  Thank you Blinks, I'll be in touch soon.

                  I am adding some photos of my condition. Hopefully this will assist other people in this thread also so we can compare what our eyes look like. The close-ups were taken a few weeks ago (of the right eye) the last photo that shows was taken in 2008 so you can see growth of the white tissue since then.
                  Attached Files
                  Last edited by mark7777; 27-Aug-2013, 06:30.

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                  • #10
                    Blinks - I was just wondering how you are doing now that's it's been a few years. I too have recently been diagnosed with recurrence of Salzmann's Nodules. My "first round" was treated with superficial keratectomy about a year ago. The doctor did not use Mitomycin C. I had asked him about it but he didn't think Mitomycin C was safe. Immediately following the procedure my vision was much improved. I still experienced some distortions but it was much better than before the procedure. We also attempted to treat my dry eyes by doing the Lipiflow treatment, using Restasis and taking Omega 3 supplements. However, my vision has deteriorated over the last few months. I recently saw a new doctor who confirmed that the nodules are back. This doctor wants to repeat the procedure and this time use the Mitomycin C. I'm not sure what to do since I received differing opinions regarding the safety of Mitomycin and I have read that there could potentially be negative long term effects with its use. Would you mind sharing your experience? Do you know what strength and for how long it was applied? Did you have it during your second procedure too?

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