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I Have Duane Syndrome, a Rare Eye Condition

Each eye has six muscles.

Each eye has six muscles.

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 of my Duane Syndrome.)

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” by 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.

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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.

Duane Syndrome Resources

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

jacobthomas1 on May 07, 2019:

I have duane syndrom, My left eye doesn't move to left and no other issues.

I been longing to fix it a bit, a bit is more if my eye move to left, I read someone had a surgery and were able to move the eye towards left to some extend (as per doctors it is upto 50 -60 percent towards left).

I find many doctors even don't want to perform a surgery for duane syndrom as they think cons outweigh pros.

Can someone kindly share your experience with surgery to fix the eye movement including the doctors name and hospital if you are in USA.

( As per duane syndrom medical documents I read, it is impossible to move eyes with the surgery as it is miswired from nerve), I'm not talking about fixing the eye muscle to position when look straight, making the eye move to some percent.

My email address - jacobvilla@hotmail.com

Any help really helps.

Jen on April 16, 2019:

My daughter is 13 and she was diagnosed at age 1. Her left eye does not move outward. She's never had surgery because the surgeon said there is no cure and where she is, people who have the surgery hope to be. Because she was born with it, her body learned to adapt. She has a slight head tilt which allows her eyes to work together and not see blurry. Her eye does cross sometimes and kids have pointed it out, but no one has ever really been mean about it. I've always given teachers a heads up so they would not draw attention to it in class. My daughter is a dancer. Sometimes when she turns or has to make animated expressions, the eye cross is obvious. I always worry about her self esteem, but up to now she hasn't let it bother her. She's a beautiful girl, and most of the time it is not noticeable. The best advice I can give to a parent who has a child with Duane's Syndrome is don't make that who they are. This is an abnormality, but there are so many worse things out there. My child has Duane Syndrome but that does not define her. She's beautiful, kind, smart, and very talented. That's who she is!

Celestine Smyth on March 09, 2019:

I have double Duane Sundrome. At 58, I have considerable neck deteriation due to a lifetime of head turning (just to see). Has anyone else come across this longitudinal symptom?

Ajoy Das on February 28, 2018:

I have bpes syndrome....It is genetical disorder...if any person have this syndrome like me ..... please Give me some suggestions that what should I do! ..... I am from India.

Helen on February 12, 2018:

Hello. You all have no idea how happy i am to read about adults with also DS. I am a 48 year old woman from The Netherlands.

Had an operation 23 years ago but my left eye slightly went a little back to its "normale "posture.

An as the most of you i have a normal life.

Was married and have 2 almost adult kids.

But sometimes i am really really insecure about how i look.

Thanks again.

Jordan Beadle on February 08, 2018:

Hey! I have Duane Syndrome too!! However, mine is in my right eye. I know exactly what you went through! I have to see a chiropractor often to put my neck and back into alignment. It is not necessarily the funnest experience, but it is fun to scare people with it...

Millie on December 09, 2017:

I am a 62 yr old female with DS. I was born long ago when it was called “cross eyed”. Happy to say I’ve never felt less then because of it. My Dad said it looked cute and part of me. No one ever made me feel inferior. I was populist on school. I wore glasses for one year which I hated. But my vision has always been strong 20/20. I only started using glasses in my 40’s and just for reading. No bifocals. I also drive very well and have great distance. I just can’t see those darn little letters anymore. But when reading eye chart I see the letters very well. Struggle with last line.

I was treated at the Best hospital in the world, luckily I lived around the corner. The New York Eye& Ear Infirmary. It still exist.

As a baby the Doctor suggested an operation. My Pop said no because he feared after a while it would return to its natural state. Plus my Pop really thought Ilooked so beautiful and encouraged me growing up that there was nothing wrong. And dated anyone to tell me there was. I had many make friends and had no issue getting married.

It just wasn’t an issue and it doesn’t affect me in any way. Yes when I turn my head abruptly the eye goes in noticeably but I learned long ago to turn my whole head and eyes. You get used to it. But I never let it bother me or hurt my self esteem. So far neither of my grown sons have it or my only grandchild. I noticed years ago I inherited from my mothers side, my Aunt, my Mothers half sister.

No special treatment or arrangements Gad to be provided. I guess there was no fuss made about it.

Just tell your kids that they are special and God choice them to have this wonderful gift and that they will use their amazing eyes to accomplish a lot.

Funny!! But throughout my life I tried different things to see how I could benefit from having DS. And there are a few perks. My peripheral is amazing... I can see really far over my shoulder when i turn my head. I have great nigh vision.

Anyway Good luck and enjoy your gift. You are perfect just as you are.

Millie C.

Deana on November 20, 2017:

Thank you so much for this article! My daughter, Lilly, has DS. She is 6 years old and has worn glasses since the age of 2. Her current opthamologist wants to take her to the highest level of strength in her glasses prescription to see if this helps with her head turn. I am looking for a second opinion on this. I enjoyed reading your article. Thank you.

Laura Romano on November 12, 2017:

Interesting to read your post and all these comments. I have DS and am now 57. Had eye surgery at 16. Didn't know I had DS until a few years ago! Wondering if it's why I've had issues with poor depth perception and balance my whole life. And btw for those worried about their kids, I've lived a very "normal" and happy life both personally and professionally, despite some teasing by other kids as a youngster.

E's Dad on September 06, 2017:

Thank you for the simple article on DS. My son is 14 and was born with DS in his right eye. He's had 2 corrective surgeries which helped but he still has considerable head turn. I'm glad to hear the head turn is a normal part of DS.

Lauren on September 05, 2017:

I'm 22 and have lived my entire life with this condition. In my research it is known to affect the left eye and mainly in women. I enjoyed reading about another person who understands the left body turn and that looking straight is not necessarily straight. It took 3 surgeries for me. My eye no longer moves except for the slight up and down movement. I have also built up scar tissue behind my eye causing a dramatic amount of vision loss. But I've been dealing with this for a lifetime that it does not effect my daily life. And friends and family always tell me they don't even notice it anymore. So it does not bother me. It was nice to read about a person just like me

Christina on August 19, 2017:

I have the same eye conditions as you. Left eye that doesn't turn left. I had surgery at a very young age, 2 or 3,to straighten my eye. Now at 36 I still haven't noticed my eye to be off center so that is good. My left eye unfortunately is legally blind though. None of this has ever caused me too much trouble as I'm just used to it. I drive, have a great job, and have 2 handsome boys with no real big eye issues. Most people seem to not notice my eye condition. I am still very self conscious at times, especially if someone sits at my left side to Cathy on a conversation. I'll normally turn my whole body to talk so they can't see my imperfection. I still battle with self image issues due to this. It truly helps knowing I'm not alone.

gloria on May 17, 2017:

Thank you for your informative article. I have exactly what you have and appreciate your sharing. I am soon going to get cataracts removed - that should be interesting.

Jac Chamberlain on May 15, 2017:

Thank you for this, I have this condition and its nice to hear from other people with it as in my whole life I've never met anyone else who has even heard of it. I'm 27 and day to day I don't even notice it anymore but 3D glasses are a major pain lol

Lisa on March 03, 2017:

Hello! I just came across this article. I'm a 30 year old female and I have the same condition in my left eye. I find it's bothered me more and more over the years. As a kid, I didn't pay much attention to it but I did get teased by some kids when I was in the 6th grade which was so tough. Luckily, I wasn't teased about it except for that year in school so it might have been just some mean kids in that particular class. I'm sure others have noticed but never chose to point it out or ask. I do often wonder how many people notice? Like my co workers for example. I don't ever bring it up to anyone including my family. I only ever discuss it with my doctors but curious to know how many people have noticed it.

Over the years, I've become far more conscious of it and I'm always compensating as I don't want people to notice. It's so hard being in meetings or when I go to restaurants with large groups, I tend to sit at the end of the table where I don't have to turn left to talk to people. Sometimes I avoid eye contact which can make me come across as rude which is totally not the case! I do turn my body a lot to talk to people and after reading some comments below, I realized that people must wonder why I'm always turning my body instead of my head. I think one of my former co workers pointed that out once that I always turn my full body to talk to ppl and I kind of brushed it off. I find being at parties or events where you're standing in a little group annoying because I can't just easily turn my head when I'm in a small huddle. This is one of the cases where I avoid looking at certain people speaking which can make me come off as rude :S Being a female, I find it's a bit easier for us as we can wear eye make up that perhaps conceals the look of the smaller eye a bit. I often style my hair so part of it covers my left eye.

I'm a social and outgoing person and I don't think this condition has prevented me ever from having a social life but I can definitely get insecure about it and I think it's the root of the anxiety I often struggle with. I always think that if I didn't have this condition, how much happier I'd be. I look at people who don't have the condition and think how lucky they are to speak and look at others so freely. I guess it shows that we often take for granted things about us that others would wish for. Just as I sometimes envy people without the condition, there are people who may envy us for all the healthy and normal things about us.

I did get surgery almost 4+ years ago. The DR said my left eye before surgery would only move to the left by about 10% and the surgery improved it by 40% or 60%? I can't remember exactly. I've noticed an improvement when I look in the mirror to the left but the small eye thing doesn't go away. I just can't believe that with all the advances in the medical field, they've never been able to perform surgery that cures the condition? I really wish that one day there will be! I would travel anywhere and pay to have this surgery done! I feel like a huge weight would be lifted off my shoulders and I would gain so much confidence.

Anyways, I just wanted to reach out to say that I enjoyed reading your article and it's so nice to know I'm not alone and there are people out there who share the same conditions. I've never met anyone with this condition and I actually don't talk about it with anyone including my family. I've avoided talking about it all my life and never expressed how much it bothe