Diagnosed with drusen? Me too.
"There's the drusen," said the ophthalmologist last year, pointing to what looked like a little mountain range on the digital "map" of my optic nerve. It was the clearest look I'd had at this unusual eye condition since being diagnosed with drusen at age 13.
Drusen (from the German word "druse" meaning "stony granule") are small whitish or yellowish deposits in the eye -- found either on the Bruch's membrane in the vascular part of the eye (the choroid) or (as in my case) on or around the optic disc. They are believed to be made of protein and calcium deposits in the eye.
How is drusen detected?
In a 3D image like the one I saw of my eye, these calcified substances make the optic nerve appear convex -- sticking out -- rather than (as the doctor explained it) slightly concave like a normal optic nerve.
But most people don't have access to images like this of their eye unless there's a problem. Drusen is usually caught on a routine eye exam. A normal optic nerve head (or "optic disc") will have a clear border or margin around it, while with optic drusen it will look irregular around the edges and may appear bulging or swollen.
The scary thing about this is that drusen can look, to the doctor, a lot like papilledema -- an optic nerve swelling caused by too much pressure in the brain, which can indicate potentially life threatening conditions such a brain tumor or fluid in the brain. Drusen has sometimes been called "pseudopapilledema" for this reason.
In younger patients, the drusen can be less calcified (softer) and the optic nerve with drusen more "elevated" or bulging looking, making it even harder to distinguish from papilledema. Careful diagnosis and, if necessary, follow-up testing is very important.
When I was 13, my eye doctor sent me to a children's hospital for testing because he believed my swollen looking optic nerve could be coming from a dangerous brain condition. Only after days of examinations, CT scans, etc., did a specialist from another hospital come in and definitively diagnose me with optic drusen.
Who gets drusen?
About 1% percent of the population has optic nerve drusen.
About 75% of people with optic drusen have it in both eyes.
People with drusen are predominantly Caucasian.
Drusen is believed to be an inherited condition.
Is drusen dangerous, and what can I do about it?
Most people with drusen are asymptomatic, meaning it does not cause problems in day to day life. But in some cases it's associated with vision issues -- for instance, in the sharpness of vision or clarity of the visual field. This may be an effect of the drusen, as they enlarge, messing with nerve fibers and the vascular supply.
Unfortunately, as we age, drusen can be associated with macular degeneration -- which is a concern for me, since macular degeneration is part of my family's health history. Progress is being made in terms of treatment, so that's something I want to keep on top of.
What can be done about drusen itself? Not much. Prompt and careful diagnosis is imperative because of the potentially similar look of drusen to papilledema. Ultrasound can be helpful in differentiating these conditions, especially in adults, whose drusen is more likely to have calcified. After that, eye exams every 6 to 12 months should include monitoring and photography of the drusen to note any changes, along with the standard measuring of ability to see contrast & colors; peripheral vision testing; etc.
If you have drusen -- when were you diagnosed?
More info on drusen
There's not a ton of great info on the web, but I did find these useful pages:
Writeup from Handbook of Ocular Disease Management -- includes "clinical pearls" on differentiating drusen from more urgent conditions
A drusen case study from the University of Iowa Hospitals -- plus info on drusen symptoms, diagnosis, complications & treatment
Developed from a scientific study on supplements to prevent macular degeneration, this vitamin & mineral formula could be especially helpful for those who already have the condition but want to stop it from becoming more severe. Only take this if your eye doctor recommends, though, and watch out for side effects -- always a possibility with supplements as well as medications.
Or was your child, spouse or other loved one diagnosed with drusen? If so, did the doctor do a good job explaining the condition? Did (s)he offer any advice for the future?