Anyone have Salzmann nodular degeneration?

I have Salzmann nodular degeneration in both eyes, unfortunately overlapping my pupils, especially bad in my left eye, badly impacting my eyesight. I was fitted for scleral contact lenses last year and they have been wonderful. They really helped to correct vision problems I was having that could not be corrected with glasses.

Did his vision ever improve or get more consistent?

I have Salzmann’s nodules in both eyes. I had surgery on my left eye several years ago and though the irritation and pain subsided, it left a scar and there is some vision loss. I still do good enough for driving uncorrected.

I have been stable, despite my dry eye for the last 3 years, until a recent bout of dry eye. My cornea specialist says that before I get cataract surgery, we’ll need to treat my nodules. My cataracts are early and not a problem yet. I’m not sure what she meant by treating. I’m apprehensive since I loss vision accuracy with the surgery on the left eye. The left eye was done by another eye care professional. My current ophthalmology team is with a world renowned vision center in Durham, NC, I think I’m in good hands. It’s scary.

Yes. The first eye healed very well and is stable.

Two months ago he did the 2nd eye. It has been challenging. It was recently discovered that it is infected and the doctor put him on antibiotics for two months. Hopefully this will lead to better vision. It has been blurry since surgery.

What are scleral contacts? My Salzmann's is not blocking my vision but it is causing my cataract lens to not really help in improving my vision. Thank you. Renee Martin

This support group is informative and raises questions and topics to discuss with doctors prior to and after procedures. Immediate post surgery was extremely painful-my amniotic membrane did not adhere well to my eye, then I had shingles in the eye. I’m concerned about moving forward to eliminate nodules in the other eye and address my cataracts. Input please-Thank You. ASAP -Upcoming appointment.

I am not sure if we are talking about the same disease/condition since the details seem somewhat different. Perhaps it is because we live near Callahan Eye Clinic - one of the top in the nation. A relative was diagnosed with Saltzmans several years ago. Her eyes, normally dark brown, had taken on a greenish hue. She was immediately sent to a cornea specialist who scheduled her for surgery. He removed over 1,000 small nodules - both eyes were treated. She was told that the average time for repeat surgery is five years, and sure enough, she recently began having blurry vision again (about 5.5 years later) and is now scheduled for repeat surgery. This sounds somewhat different from the comments I’ve been reading, and I wonder if there are several “variations” of the disease.

I only know what I have experienced. I’d love to know what procedure your friend had. I have an adhesion on my right eye and one on the left that was removed surgically. My current cornea specialist at Duke tells me they will treat them before I get cataract surgery. I’m very nervous about it.

Please post more info, if you can. I’ve never known anyone else with this condition.

I’ve had Salzmanns Nodules in both eyes sine 2009. It first began with terrible pain in both eyes. I had them scraped off using a scalpel 6 weeks apart in 2012. They’ve grown back several times since, and I’ve had them removed twice from each eye. My vision gets better with every surgery, but the recovery is quite painful. I just got my new prescription from my surgery in March. It’s quite a recovery process, but helpful due to the pain and vision issues they cause. I hate the nodules, and I have no choice but to have them removed every now and then.

I had mine scrapped off too, only it didn’t go as smoothly as the surgeon thought. I didn’t have a particularly painful recovery, but I wasn’t very pleased with the outcome. My vision has never really returned to the same status. Therefore, I’m hesitant to do the other eye. But, I suppose technology has advanced in the last 10 years. I’m curious as to whether there is another option over scrapping. I have to get my Vit B12 deficiency under control before I do anything else.