The following postings from the ROP list provide some information about nystagmus. Nystagmus is often associated with conditions other than ROP, but it is often found in people with ROP as well. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: August 2, 1998
From: Sarah J. Blake
The way my optometrist explained it to me is the eye's attempt to focus when the vision is so poor. I had some pretty clear vision as a child. I could read with a lot of magnification and could see the stripes on people's shirts if I was walking behind them. That was all when I was about 9 or 10. I still have a memory of preferring to walk in line at school behind one girl in particular. She was Hispanic with blonde hair, and she always wore white shoes. I thought she was beautiful.
Things got fuzzier very gradually, and now it alternates between varying levels of fuzz. I have no doubt that my nystagmus has become worse as my vision has become worse. It would be a dream come true for me just to be able to see the kind of things I could see at age 9 or 10, to be able to use a magnifier to read anything or have those huge glasses that people hate. From seeing my niece's face the other day, I think she is beautiful. I want to see other people's faces, and they're just not going to be too likely to get that close. (giggle) I think they call that personal space. (LOL)
Date: January 10, 2000
From: Scott Richards
For me, the easiest way to think of nystagmus is that it's an exaggerated fixation mechanism. In a normal visual system, the eyes are constantly making small adjustments to keep the eye fixated and to avoid "washing out" the image. If the eye is perfectly fixated on an object, the image will disappear from the vision in a few seconds. The constant movement and refixation helps prevent this. In nystagmus, this constant movement is exaggerated, to the point that the eye can never get a good view of the world because it is always moving. It is not really an eye problem, but more of a brain problem. Patients with mystagmus often have a "null point", a position of the eyes that reduces or eliminates the nystagmus and allows for better vision. If this position is anywhere but straight forward, people adopt a peculiar head position to keep the eyes at the null point. The surgery for nystagmus is usually designed to move the eyes and get the null point into straight-ahead gaze. I'm not aware of any other surgeries commonly being done for nystagmus. This is all a little out of my area of expertise, so check with your doctor to see if there is something new I'm not aware of.