I Have Duane Syndrome, a Rare Eye Condition
I Have Duane Syndrome - A Rare Eye Condition
My left eye does not move to the left and is slightly off center. This is due to a rare eye condition that I was born with called Duane Syndrome.
My entire life I have had to compensate for my eye condition. If I look straight ahead, I actually see double. I have very limited peripheral vision on my left side. I have difficulty seeing if my right eye is covered (e.g., during an eye exam). And, interestingly, I can’t use 3D glasses!
Most people have never heard of Duane Syndrome and confuse it with a lazy eye condition. I’d like to share more about what Duane is all about—and how I’ve dealt with the condition from birth to my 40s, including surgery in my 30s.
What is Duane Syndrome?
There are six muscles that control the movement of each eye allowing it to move up and down, right and left and at angles. The muscles know when to move based on commands they receive from cranial nerves that exit the brain.
Duane Syndrome is a rare condition where the nerves and messaging from the brain simply don’t work correctly and therefore cause problems with eye movement. The problem is not with the eye muscle itself, but with the nerves that transmit the electrical impulses to the muscle. This is sometimes called “mis-wiring”.
In most cases, people with Duane Syndrome have problems with “abduction” or do not have the ability to move their eye outward toward their ear. This is the problem I have with my left eye,
There are also Duane Syndrome cases where people are unable to move their eye inward, also called “adduction”.
This is very different than the Lazy Eye syndrome, which is a condition where one eye is stronger than the other and clarity of vision is impacted. Lazy Eye problems can be treated and corrected.
There is no treatment to fully correct Duane Syndrome. Also, Duane Syndrome does not directly cause vision problems, but anyone with it is subject to normal vision deficiencies and may need contact lenses or glasses. (I do wear contact lenses, but not as a direct result from my Duane Syndrome.)
My Duane Syndrome Photos
How I Compensate For My Eye Condition
If I look straight ahead I see double images. To get a “normal view”, I have to turn my head slightly to the left and move my eyes slightly towards the right. When I am talking to people, they tend to follow where my head is pointing not my eyes, so they start sliding to my left and I have to start turning my body to the left. Sometimes we start moving in circles!
When I was a young girl, I wasn’t that good at compensating for my eye condition and remember getting called “cross eyed” from some of the mean kids. By high school, I was much better at compensating. Now in my 40s, very few people even notice my eye condition,
However, this constant “head turn” keeps my body out of alignment, so I have extra tension in my neck and upper back.
Also, since I don’t have good peripheral vision on my left side, I have to be extra careful when I drive. I double check traffic and look in multiple mirrors, whenever I am taking a left or switching lanes on the highway.
Video of Duane Syndrome Eyes
Surgery To Center My Eye
In addition to not moving outward, my left eye is slightly off center closer to my nose.
In my 30s, I saw a specialist at the world renowned MA Eye & Ear Institute who presented an eye surgery option. There was a surgical procedure available that would cut & stretch the eye muscles, which could lead to my left eye sliding back to a central position. If this worked, it could significantly reduce the amount of head turning I had to do- therefore helping to reduce my neck and back tension. There was a risk presented - that even if the eye was centered after surgery, it could move back to the original position. Even with this risk, since my insurance provided full coverage, I decided to move forward with the surgery. After weeks and weeks of extensive tests, the surgery was finally scheduled. I was put under anesthesia and the operation was completed in a few hours. When I woke up, I was surrounded by the doctor and her two assistants. They checked out the location of my left eye, made some minor adjustments with the thread from the stitches, then officially sewed up the surgery. Yes- kind of gross! For the first few months after the surgery, my left eye was centered. Unfortunately over the next year, the eye moved away from the center. It was not as bad as it was before the surgery, but it was no longer in the center. This was unfortunate, but even with the slight improvement I needed less of a “head turn” and the tension was reduced in my neck and shoulders.
My Eye Today
Now in my 40s, the general public does not often notice my eye condition, but most doctors still do. When you have those tests where you’re asked to “follow my finger with your eyes” or "follow the light," the left eye doesn’t move to the left.
I've actually had doctors who did not notice my eye condition—which is kinda scary.
Recently I went to a new optometrist to get my contact lens prescription updated, and there was a student doctor helping out. When he saw my Duane Syndrome he actually got all excited, since he had never seen a patient with it before. He asked if I would do a few extra vision tests. I was glad to help with his doctoral training!
I hope you found this article interesting, and that it has expanded your knowledge about the rare Duane Syndrome condition.