28 Comments

  1. laurie davis says:

    So what is the treatment? I have had this on both eyes for a few years but lately it is getting very painful-like I have sand in my eyes, esp in pollen season.

  2. I have had these nodules for 5 years and also have them in both eyes. My left eye was the worst and the nodule was growing. I just had them removed this past week. It was an outpatient procedure that took 15 minutes. The healing process feels like the grit but will soon go away. Everyday it gets better. I am going back to work on monday. Hope this helps.
    Good Luck.

    1. Thanks as having this done in 2 weeks and nervous

  3. I have also had these nodules, probably for 15 years now.
    My biggest problem is the sensivity to light. Would like to
    know how Jeanne is doing now and was the procedure called a
    “scraping”. Need help!

  4. I had the procedure many years ago. It’s not fun but is bearable. They do one eye at a time, by basically scraping the nodule off of your eye. During the procedure your eye is anesthetized with drops so you don’t really feel anything. My biggest problem was that I got nervous and had a hard time lying down still for the procedure. I also have nystagmus so that made the whole thing take a bit longer.

    Recover took about a week per eye. I had a patch for about a week until followup. You get some pain like there is something in your eye, but again it is mostly just uncomfortable.

    I have to go again soon as the nodules have reappeared. This time I am going to take something to calm me down and help with the pain.

  5. I have been diagnosed with Salzman Nodules. It has been recommended that I have these removed. I am wondering why some people can have these for years and why the doctors are recommending the removal? The insurance company does not want to cover the facility to have this surgery, which means I will be out of pocket the cost of surgery. Has anyone else had this problem. What recommendations can you make? Thank you.

  6. I have had Salzmann’s for about 20+ years. (I am only 46) As I am in the “advanced stages” of this disease, I have had numerous surgeries. This all started when I was 20 and thought I needed glasses because my vision was funky. The opthamologist found a very tiny spot on my cornea. He sent me on to a corneal specialist. This is how it starts. To date, my most recent surgery was a “scraping” (as usual)and then a drop called Mitomycin C (I hope I spelled that right)after which they did a T-cell transplant. Basically it’s an amniotic transplant. I am optomistic that this could be a long term help. Mine seems to recur often so to have these newer things to try leaves me optomistic. So, stay positive and ask a lot of questions. It took me seeing a lot of “corneal specialists” before I found my doctors and surgeon I have helping me now. BTW. Another thing I learned along the way is that “lid hygeine” (having to do with the oil glands on your upper and lower lids) has a lot to do with this disease. Ask your doctor! Well Wishes to all-

  7. I was told I had scaring on my left cornea by my optomist and was starting to interfering with my vision. He said that I would have to have a cornea transplant at a later time. Went to a cornea specialist, was told I had these nodules on both eyes. Took pictures with this special camera and you could see how the nodules were interferring with the shape of the cornea. He uses a polishing method. My vision was greatly improved. I was told I had a 50% chance of them coming back. Dry eyes should not be ignored. Use a good artifical tear often. Good luck to us all.

  8. Deborah Pulsford says:

    I am going to have this surgery done on my left eye in about two hours. The comments you have all left has been very helpful in knowing what to expect. My surgeon said there are signs of it on the right eye as well but no treatment is required at this time for it. Hopefully I will be able to relax and not ‘freak out’ while the procedure is being completed.

  9. Barbara Marks says:

    A doctor at Duke has recommended PTK to treat my Salzmanns nodule in my left eye. Since I see only with this eye, I am very hesitant. Has anyone had this kind of treatment, and how did it turn out?

  10. To Barbara Marks: Did you have the treatment done? I just found out I have Salzman’s but my dr is treating with steroid drops. I only see with one eye also, so curious to know how you’re doing. Has anyone else had success with the steroid drops?

  11. Barbara Jean Lowe says:

    Your comments have been helpful to me as I was seen today and also told the Salzman’s needs to come off my left eye. My vision has gotten progressively worse the last few months and sensitivity to light is almost unbearable at times even with sunglasses. I find it interesting that almost all the comments are to due with the left eye.

  12. I have Saltzman’/s and I only have one eye. I am very light sensitive and it burns often. I treat the irritation with excessive artificial tears. The doctor offered to scrape the cornea but could not guarantee that my cornea would heal completely- blood vessels may be damaged frntadiation and healing might be an issue. I opted out of the scraping in an attempt to preserve my vision. However, some days the pain and irritation gets pretty painful.

  13. Jan and Barbara – wondering what your vision loss is from? Wondering if Saltzmans can be a result of prior radiation treatment I had for retinoblastoma- cancer – back in 1976.

  14. just told that I have Salzman’s, but mine is much worse in my right eye? we are starting treatment with steroid drops and OTC overnight ointment 4 times a day. I have had dry eyes and blepheritis for over 20 years. I am 61. Doc said wevwould treat with laser if drops don’t work.

  15. I’ve got it in my right eye and I guess I’m odd because my doctor told me it normally only occurs in middle age women who live down by the river (Ohio). No surgery now, but the double vision is getting slightly worse in the right eye.

  16. I’m 41 and have been told I have bilateral saltzman about 5 yrs ago after several years of complaining about sensativity to light and a gritty feel. I’ve been told to use over the counter drops 3-4 times a day and an otc ointment at night. It helps some but every month or so it gets unbearable to be outdoors with sunglasses on even if it;s cloudy out.Has anyone found a good solution to the light sensativity issues?

  17. I’m a 37 year old female and just found out that I have Salzmanns in both eyes that they are treating with a steroid and an ointment. The worst part is definitely the sensitivity to light. This morning I had to wear sunglasses even though it was still dark out because the headlights of cars was so bright. I’m told that I have an ulcer on top of one of the nodes right now. I thought that was what was causing the light sensitivity but after reading the other comments I’m afraid it’s more than that.

  18. I was diagnosed with Salzmanns in both eyes 10 years ago (I’m 52) and last September I had the PTK surgery and they used a diamond buffer to “sand” down the bumps. The surger was painless since they numbed the eyes and I had some drugs to calm my nerves. I could see so great after the sugery! The pain afterwards is bearable but I won’t lie..it feels like someone poked you in the eyes and the first 2 days is extremely uncomfortable but there are pain meds that help. My problem is they are back. I noticed my eye sight getting worse just months after the surgery. I have an appointment with a cornea specialst Friday since now I’ve developed “floaters” in my left eye which in normal circumstances it’s normal. But since I have these eye issues it may mean a tear in my cornea. So please watch out for those floaters and make sure you discuss with your doctor. I was told if I start seeing flashes of light to get to the doctor IMMEDIATELY! I wish the best for all of you as well as myself. God Bless Us.

  19. To everyone who has Salzmanns. I have had it in both eyes for about 15 years. I see a cornea specialist at Wills Eye Hospital (Dr. Christopher Rapuano) every six months to see how quickly it is progressing. I had the cornea of one eye scraped about 8 years ago and yes the scarring comes back. Use restasis prescription drops to increase the fluid on your eyes. Do not use anything with preservatives. In between restsis, I use the ampules of liquids. Even the drops that say no preservatives do have them so the ampules are the safest and best for you. I have also had my eyes plugged to keep the fluid on my cornea as much as possible. The reason you feel like you have sand in your eyes is that the eye is very dry. Fluid does not get absorbed or float properly over the scarring. Depending on the location of the scars, night driving could be very difficult as the pupil enlarges to see more. There will be sensitivity to light. I use the drops 5 times a day. Keep your eye moist as much as possible. The idea of needing a cornea transplant should be way down the road, not a first order of helping the problem. Hope this helps. Also, I see a glaucoma specialist. AND yes, be careful of floaters. Some are okay but if you see flashes of light, get to the doctor immediately.

  20. I have just had my second eye scraped. My prescription had gone from 3.7 to 7 in both eyes in under two years, so I was concerned. My opthomologist sent me to a specialist and she suggested the scraping of my left eye because it was also feeling gritty so had it done in October – took about 10 minutes and healed very well.
    My sight increased so much, I decided to have the right eye done to before getting a new prescription for glasses. I had it done two days ago. It was very quick – about two minutes, as there weren’t as many to do.
    The nodules were very close to the white part and she scratched a vein which bled into all the white. Today, it looks much better and I have been reading with a bit of difficulty until today. I took T3’s the first day. My eyes just wanted to close, so I went to bed for a few hours.
    I have been outside in bright sunlight with sunglasses on (not dark enough) and had to cover my eyes when we were driving right into the sun – hopefully this will get better or I won’t be able to drive!
    I was told the nodules have grown over many years and might come back but I’m 65 this year and am happy to have better vision now.
    Good luck to anyone who has or is going to have this done.

  21. Just had surgery last week for my left eye. Salzmann’s was diagnosed when I went in for initial cataract exam. The contact lens bandage was taken off today & leaves me with a gritty feeling,but dr. was pleased with the epithelia healing. I’ll see my dr. again in 6 weeks to decide if I should have cataract surgery. Sight in left eye was 20/40 & right eye 20/20 before surgery. I can definitely see an improvement in sight since surgery. I’ve read that cataract surgery on an SND eye is more complicated & heals slower. Has anyone had both surgeries done?

  22. Hana Prince says:

    Do any of you have the estimate of the cost for surgery to remove the nodules? I was diagnosed with 6 on my right eye.
    Thank You

  23. Interesting that almost all people commenting are female. Tim is the only male name noted.

    I, too, am a female with bilateral Salzman’s disease, 64. No treatments yet. But the nodules are growing rapidly. I believe some optometrists don’t recognize the condition. For years I was told the discoloration was scar tissue. Struck me odd that I had never injured the eyes in those locations…my opinion was summarily dismissed.

    Interesting to read all of your posts. Good luck in treating this condition!

  24. I’ve had SNs in both eyes 15+yrs & started getting worse + SEVERE dry eye=like an open wound not able to heal AND major light sensitivity= headaches. My Ophthalmologist laser them off 02/2010. Gave up on recovery meds-NOTHING WORKED. Ended up changing my diet w/help of a dietitian [reduce 1.salt 2.fat 3.sugar in diet & flooded w/veggies]-had HUGE eye improvement. Went back to Ophthalmologist= shocked-huge improvement & severe dry eye reduced. I’m a firm believer ‘you are what you eat’. and NO, I’m NOT a vegan. Hope this helps.

  25. I am a female 61 years old. I have also read that it is very common in older women.
    My surgery wasn’t so great. I had the “scraping” done on my right eye and was told it would be no problem and would not hurt much. By the next night I was in excruciating pain and felt like something was wrong. I called in and was given T-3’s. That seemed to help a lot for pain. I was down with my eyes closed the first two days. It was a remarkable recovery on the third day. Everything seemed back to normal. I asked on FB if anyone had heard of it or had it and not one person replied back. I think it should be on the list of common eye diseases. My doctor says it will grow back in time. Lovely:(

  26. Am fully recovered from surgery (it was a rough couple of days) but results were way beyond my expectation. Within a week I could see 20/30 w/out glasses in that eye. Got new glasses (more for the other eye) am truly enjoying seeing clearly for first time in many years. Amazing!

  27. Can SN be detected in a routine annual Ophthalmologist’s visit? I am a 77 year old female who has just been diagnosed with SN after going to a new eye doctor ( I made an interstate move)for an extensive cataract assessment where I had many tests.

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