Salzmann's nodular corneal degeneration

Hi everyone,

I'm in my mid-40's. My optometrist, who specializes in eye diseases,
said yesterday that I have Salzmann's nodular corneal degeneration.
Two years ago he said I had corneal scarring on the whites of both
eyes. Last year no change. This year there is a whitish opaque area on
the irises on both eyes, visable to the naked eye. I wore contacts off
and on since 18, but wore them only a few times in the last year,
because I thought the corneas would be healthier without them.
Ironically, they are not! My eyesight has always been very myopic,
with high astigmatism.

I can find very little info on this disease on the web, and there is
only one mention of it in passing)in the archives of this newsgroup!
The doc said that he has 4 other patients with it. He said when and if
the condition gets worse, the scarring can be shaved level with the
cornea.

I live in a small city (100,000 people in the MSA). The nearest large
city is Dallas,about 250 miles away. After seeing how little info is
on the web, I'm surprised that one doc here has that many patients
with this. No one else with this diagnosis has ever posted in any
group! Does anyone have any recommendations or information?

From the little I did read, I went out and bought eye drops and they
made my eyes feel less dry and scratchy. I spend 8-9 hours a day on a
computer at work, but the doc said that won't hasten the progress of
the degeneration. Any differing opinions?

Thanks in advance for any suggestions or information, and for taking
the time to read this far!

Suzie

 

(SuzieQ) wrote in

I currently have one patient with Salzmann's Nodular Degeneration. It is
somewhat rare. The cause is a mystery, but atopy and dry eyes are
mentioned. I am not aware of any treatment, but only management. If the
nodules begin encroaching upon the center of the cornea, they can induce
highly irregular astigmatism that is only partially correctable with
eyeglasses. I have discussed the option of scleral contact lenses with
this patient. A scleral lens is a rigid lens that does not come into
contact with the cornea. I am reluctant to put her back into any other
type of lens, for fear of inciting the advancement of the disease. I have
found that corneal topography is the best way to track the changes,
especially if the lesions are encroaching upon the central cornea.

DrG

 

May be you want to google on the word "phlyc-tenulosis".
I suppose (but I am not sure) that you mean by mentioning the frase " on
the whites " that you meant the "sclera" instead of the cornea part. (your
first complications before the diagnose Salzmann)
Remember that sitting behind a computer and not being able to excaming you
could lead to a totaly wrong suggestion of what might be the problem.
Ask your specialist on what words you have to google.

Maybe this is some help to you,

Jan (normally Dutch spoken)

 

Thanks for the replies. I looked up phlyctenulosis. It seems real
similar to my condition. One possible cause is a soil-borne virus in
the southwestern USA. Since I do a lot of gardening and live in the
SW, it's worth checking out.
Suzie

 

(SuzieQ) wrote in

There is a HUGE difference between Salzmann's Nodular Degeneration and
phlyctenulosis, and no eye doctor worthy of a license in the U.S. will
confuse the two.

DrG

 

Who did?
Salzmann nodular degeneration invariably occurs secondary to chronic
keratitis, especially trachoma and phlyc-tenulosis.
SuzieQ lives in the USA so trachoma is not likely.
Also SuzieQ did mentioned she had problems BEFORE the diagnose Salzmann and
what she described having BEFORE was POSSIBLY pointing to phlyc-tenulosis.
She also asked for some more information to google on which I give her with
the line "Ask your specialist on what words you have to google"

Jan (normally Dutch spoken)

 

It wasn't clear to me what you were saying, but I thought it best to
interject with the caveat. She could also have been referring to bilateral
pengueculae.

DrG

 

A caveat is one thing but the patronizing part is not to the point DrG.

Jan (normally Dutch spoken)

 

Suzie,

Hello. I am in the same boat as you. I was diagnosed with Salmann's degeneration when I was 35. But I believe undiagnosed since 30. I am now 42.
I am trying to find another physician who specializes in Salzmann's degeneration, but I am having a difficult time in doing so.
I have had a keratoplasty three times now on both eyes and the Salzmann's has come back each time, and more aggresive. My physician now wants to do a selective keratoplasty with amniotic membrane transplantation. When I was researching this procedure, I did not fid anything in the research that this procedure has been performed to treat Salzmann's.
I know your post is very old, but hoping you may read this or someone else.

Thanks in advance for any advice.
Jmach

 

I, too, have Salzmann's Nodular Degeneration. I have had it for decades, but was misdiagnosed until recently.

You said that the nodular degeneration was more aggressive after your surgeries. Did your surgeries involve scraping the nodules down, or peeling them off?

 

My physician performed what he called a diamond polish. I believe the procedur name would be a keratectomy. I have been reading up on a lot of studies that have been done regarding Salzmann's Degeneration and it lokos like if the physician performs the removal of the nodules, then uses Mitomycin C (MMC), the chances of recurrence is very small. Unfortunately, my physician did not use this drug. Mitomycin C 0.02% is applied topically to prevent scarring during surgery.

Mitomycin C (MMC) initial use is typically for different types of cancer as well.

I did find some physicians in Boston (Boston Eye) and in Maryland (John Hopkins) that have done a lot of different studies on Salzmann's degeneration.

I have been trying to find a physician closer to my home, but the one's that have treated a higher volume of patients with my diagnosis are no longer seeing new patients. So, it looks like I may be traveling to Maryland or Boston soon.

If you would like me to send you some of the studies I have come across that look promising, please send me your email address.

 

I have been recently diagnozed with Salzman nodules. Just wondering if there is any more of us out there and how are you doing?

 

Recently diagnosed with Salzmann's Nodular Corneal Degeneration looking for guidance

There seems to be very little information online or specialists in my area for this subject. I had Lasik in 2001 and lapsed in my regular eye appointments from 2010 until recently. I have a history of dry eyes but noticed it has recently been getting worse. I went to a Cornea Specialist here in Baton Rouge, Louisiana at Eye Medical Center to have my vision checked since I am getting older plus I do computer work for a living and recently developed pronounceable half moon shaped white modules forming on the inside of BOTH iris's. He diagnosed me after doing several tests with Salzmann's. The doctor gave me lots of eye drop samples, told me to try Restasis again for my dry eyes ( I tried that years ago and tear duct plugs but did not have much affect ) and told me to up my vitamins that I currently take. The doctor said when the time comes I will more than likely be a poor candidate for surgery due to my low amount of eye tissue and how sensitive it is. He told me to come back annually to be re-measured and recheck my vision so far it is:
OD: -0.50 Sphere,
OS: -0.50 Sphere, -0.075 and 085 axis (I have developed a slight stigmatism)

Is there anything else I can do "preventative" wise for this condition? I am 41 years of age and very active. I do take Zyrtec for my seasonal allergies and I was taking Benadry at night until I realized it was 'drying' my eyes out literally. I did go ahead and get a prescription for Restasis filled. I have also heard that "Singulair" may be a good alternative to Zyrtec. Has anyone tried this?

Thank you for your time. Any guidance you can provide would be appreciated.
I am looking to get a second opinion and any advice for preventative treatment. The thought of going blind possibly one day is quite terrifying. Is there a forum with other cases to read and hopefully success stories with tips? Any doctor recommendations?

Nicole