My left eye does not move to the left and is slightly off center. This is due to a rare congenital eye condition called Duane Syndrome.
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.
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.
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 - firstname.lastname@example.org
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.
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.
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 bothers me as I would hate for my parents to feel guilty of something they had no control of.
A few people mentioned in the comments that we are only given what we can handle and that is so true! I think I was told that 1 in 10,000 have Duane's so we are definitely unique!
Question: I don't have kids but I would like to one day. Is there a % or likelihood that my kids will be born with this condition? There's no trace of it in my family currently. I'm the only one that has it.
Christopher on February 15, 2017:
I had 3 operations to fix my strabismus all 3 were before I was 5. All 3 operations failed. I'm now 39 years old multiple eye drs all said nothing could be done. I finally went to a specialist and within minutes told me a have duanes syndrome. The reason each operation failed they were fixing the wrong problem. I'm scheduled for my first eye operation in 30 years. My Dr said 80% chance of correction in one surgery 20% I'll need 2 operations won't know till a month or 2. I'm so excited. I don't care about perfection, I just want to talk to people who will look AT ME when we talk.
Gary Kendall on January 24, 2017:
I recently found your article and wanted to comment because I too have Duane's. Unfortunately I have it in both eyes, with the inability to move either eye in an outward direction. I was amused by some of what you wrote, as many of the same things have happened to me. Optometrists get very excited when they realize what they have before them. One doctor even asked me to come back at a later date just to study the condition free of charge. Tomorrow I have an appointment with a new doctor. I'm sure this too will take twice as long as it probably should. Funny story, I was recently stopped by a police officer late one night, and because my eyes looked odd to him he began shining his flashlight into my eyes. He then asked me to follow the light as he moved it side to side. Then, as usual, I had to explain the condition and then demonstrate. You know, both eyes. He seemed weirded out by the whole thing and was obviously a bit embarrassed. It got me out of a ticket.
brunoalhe on January 18, 2017:
Hi! I have Duane Syndrome as well and I decided to upload a video answering some questions I have been asked many times, hopefully it can help someone realise it is not as bad as it seems :) https://www.youtube.com/watch?v=tv05VavAg1s
yasaswini on December 22, 2016:
I also have duane syndrome. same with the left eye. Am now pregnant and quite worried if the offspring gets affected because of me having syndrome. Any one have any suggesions who have undergone maternity being duane...
I feel it quite scary if chances of her getting it too :(
MatthewG on November 26, 2016:
I have DS when I was younger I went to doctors that would notice it but wouldn't know what it was on till a few years ago did they finally tell me what it was. I am glad to see more people like me. In the end I still consider myself a unicorn. But I do not know what I need to do to help me in my driving do i get my own mirrors or how did you do it?
Chesarai on June 22, 2016:
Hey! I have no idea how old this is but I figured I might as well comment. I'm 13 years old, and I have Duane Syndrome. Mime is similar to yours, Type 1, but it affects my right eye instead of my left. I was really excited when I saw this because I had never seen or heard of anyone else who has Duane Syndrome. Also, I don't know if anyone has ever heard of this with this condition, but I also can't cry out if my right eye, which is my affected eye. Every time I cry, I only cry out of my left eye. But when my eyes water, not crying, only my right eye waters! My mom told me it had something to do with my tear duct being paralyzed or something, but I've done research and haven't been able to find anything about this going with Duane Syndrome.
Skydancer on January 05, 2016:
Little late but I have DS and oh wow, I thought I was the only one. I just found this article by accident or maybe not. Either way, I have it in my left eye and while I have no double vision ahead or right, looking left you bet. I am in my 40's and well the doctors had no clue back in the day, they talked about muscles and fixing it. Its now mute because I have lived with it all my life. It does not effect me in my peripheral vision which is weird one eye doctor in my teens found that out. I still turn my head left when driving and long ago stopped the parlor tricks. My family thought I should cross one at command. It gave me severe headaches, and after my mother spanked me and told me I needed to listen and do it as I was told by her and other adults I got them in trouble. Told my doctor and teacher. They told her and my father if they wanted to have entertainment for family and friends get a clown but hit me over something like that they have me removed.
Yuri05 on December 11, 2015:
I had never heard about this condition before...very informative hub and thanks for sharing your experience!
Marsha on October 12, 2015:
I have DS type 1 in both eyes. I can't turn either eye outward. I was diagnosed in my early 20's...I am now 50. I too had to endure the "cross eyed" names all through childhood. The eye Doctor that parents took me to thought it was lazy eye, and treated it as such. With eye"exercise" and wearing an eye patch. These didn't help of course. I do have trouble with peripheral vision because of it. I've been told that there is nothing that can be done to correct it....
Chelli Schmac on April 15, 2015:
Thank you for the wonderful article. It was great to see someone explain this experience with this syndrome exactly as I have experienced it. I am 45 and have Duane's Syndrome as well and everything you said fits to a tee. I am unfortunately experiencing some vision issues at this point I think because I am so right eye dominant. So I am on a mission to find vision exercises that may help. And I have constant neck and back pain that is just getting worse over time. I wish there was a way to correct this permanently. The stress from having my head off-center is wreaking havoc on my body.
Abagail on January 17, 2015:
I have it in both of my eyes, had surgery when i was 5 and 10 months old and twice when i was 4, and the thing is I`ve never bine made fun of for it. But the thing is i was diagnosed with it when i was about 2 months old so i only realized something was wronge with me when i was in second grade because i thought it was what everyone else dealt with. But now im 14 my eyes don`t move side to side and barley move up and down, so i have to move my head more than most people do. My eyes do drift and i have been asked why my eyes drift or if i have lazy eye but ots sort of difficult because i have been put in learning support groups because my school sees it as a learning disability and it really isnt. So i finaly got out of those but the only thing that i use is exstra time for every test i take.
Rose on January 16, 2015:
I am 15 years old and have Duane's in my left eye which stops my eye from turning left and also causes my eye to be slightly off centre. Apart from having to sit in a certain position in class and not being able to look at people to the left of me when they are talking, having DS hasn't caused any major troubles in my life until recently when someone started teasing me about it and I became very self conscious to the point where I wouldn't socialise or let anyone take my photo. Since then I have seen a leading doctor and we have booked in for corrective surgery. After reading this post and all of the comments, I am actually really surprised of the amount of people who also have the syndrome and it's comforting to know that people are going through the same troubles. All my life I have come across negatives of having DS but I have also found positives including being unique and being able to do something that no one else can do. Funny how everyone calls it their 'party trick' -might have to use that phrase now!! :)
Sarah on December 22, 2014:
I have had DS my entire life. No one else in my family has this condition, nor do my children. I have never sought more than basic information regarding this condition, and I love how this article has enabled so many of us to connect. I was searching DS looking specifically for symptoms resulting from the condition. I have one that is never listed, but am curious if anyone else experiences this - I have developed some eye pain and discomfort in the the affected eye (left) over the past few weeks. I have lived with this condition my entire life without any incidence (except for when I see a new optometrist - HA! They love it, so rare!!!) , and was looking for others with the same disorder to see if they experience any discomfort in the affected eye (or eyes) from time to time. It feels like eye strain (probably from watching my son's basketball tournament looking left, right, left, right) but am curious. My right (unaffected) eye is completely normal and pain free. Thanks for any input!!! BTW - loved reading your comments referring to it as your "party trick" (so true, a smash hit in college!). Also can totally relate to having to seat yourself to the left of people to avoid the annoyance of body turning so as to not "cross" your eyes while talking to them :) I have learned to just come straight out and tell them - and they are always very accommodating and interested!
MJ on December 03, 2014:
This has been by far the most active post I have ever seen about lonely little Duane's Syndrome. It is nice to see though.
I'm thirty years old and my Duane's was discovered when I was a baby, as it is fairly pronounced in my right eye. I am also completely deaf in my right ear and have an extensive congenital deformation of the cervical spine (Klippel-Feil anomaly). These three issues together make an umbrella syndrome called Wildervanck. It is one of the recently (2002) discovered CCDDs, or congenital cranial dysinnervation disorders. This means that several of the cranial nerves have not developed properly, resulting in various possible symptoms. This definition replaces the former understanding of Duane's as primarily a problem of the musculature around the eye.
It's not my intent to frighten the people here, many of whom seem to have issues strictly relating to their eye. For others with a more complex constellation of symptoms, however, I suggest looking for more specialized information, especially from NORD, which studies rare disorders and from Boston Children's Hospital, which has been conducting a years-long study into the CCDDs.
April on November 17, 2014:
Its nice to know about this. I am 26 years old. I have duanes in both eyes. Cant turn them left or right. Have to turn my head to look at people. I also went through the name calling. Lazy eyes and cross eyed you name it. It bothered me for so long i still dont look at people in the face very much. Even after ive learned to control it over the years to where its not that noticeable. I had no idea there were others like me. When i found out about it there wasn't much information about it when i was young. I am glad to know. For the young ones out there just going through this stay strong because we all are beautiful.
Eve White on November 05, 2014:
Some excellent insights here into what it's like to live with Duane Syndrome. My 5 month old daughter has just been diagnosed with type 1 DS - her left eye will not turn outwards. I am interested in hearing from anyone who has been advised to do eye exercises / eye patching - I would greatly appreciate any communication - email@example.com
Akbar on July 25, 2014:
WoooooW.... This has been here about 5 years..how interesting!
I'm really impressed that people with this problem get along well, cause I have it too, but I can't take it anymore. I'm 24 and I'm from Iran. I've been called cross-eyed the whole of my school days. To be honest, the torment that you would never date with hot girls, busts me up.
I've lost hope...
Johnb465 on May 07, 2014:
Real nice design and great articles, nothing else we want kebgcgdkedde
Paul on January 02, 2014:
Taylor Levit, I would like to learn more but not so much on a public forum. If you feel comfortable, please send me an email at firstname.lastname@example.org as I would like to learn how I can help assist my son through any challenges that he may face with duane radial ray. Also, I have some knowledge that I can share with you from what I have learned from my sons doctors.
Lauren, NJ on December 27, 2013:
My son is 10 months old and was diagnosed about 5 months ago. We live in NJ and have started to take him to 'The Wills Eye Institute' in Philadelphia. He also has been seeing a pediatric ophthalmologist for about 5 months.
Both doctors have said he seems to have Esotropia, bi-lateral Duane's and possibly Sixth Nerve Palsy. He has glasses to help with focusing (he is also far-sighted).
Have any of you had any corrective surgery? If so, can you tell me a bit about it? Can you recommend anything to help treat the Duane's? I am heart broken. I know this isn't that big of a deal. Many others have it MUCH WORSE. I just worry because kids are cruel. I don't want him being teased, you know?
Any information you are willing to share would be greatly appreciated!!
Taylor Levit on November 02, 2013:
I suffer from Duanes Syndrome as well and I have basically the same abnormalities. I have to slightly turn my head to the left or else I see double when my head is straight. I have had chronic neck pain in my neck and shoulders for about 8 years now. I am 29. I don't know if I want to undergo surgery like you did because I am scared. Was it worth it? I am tired of being in pain.
Vicky on July 16, 2013:
Omg! I never knew duane syndrome was ao common, my mum never really explained why my right eye is the way it is I only found out a few weeks ago the name of my condition and I'm 23!
Paul on May 19, 2013:
Gerogia, thank you so much for sharing! My son has duane radial ray syndrome very similar to what you just shared. He is going to turn two in July. The duane's affects both of his eyes and is missing the joints in both of his thumbs. As a parent, I wonder what sort of obstacles he will have to face growing up. He already seems to have a challenge when it comes to balance when walking on multilevel surfaces and also grabs objects using his index and middle fingers. Thankfully, his eyes are set forward and doesnt have any issues with seeing double. Any advice in helping this little guy along would be greatly appreciated. Thanks in advance!!!
Georgia on May 12, 2013:
Im 15 and I have DRRS and i hate it, it's affected both of my eyes and i have a very small thumb on my left hand and a large finger-like thumb on my right which has no knuckle and to bend it i have to roll it like a ball-and-socket joint. Luckily, I've never been teased but a few people have made nasty comments which hurt even if it's just asking if i have a lazy eye and i dont want to explain that i have a condition. I have a great life and play 5 instruments that my doctor said i would never be able to play which im rather happy about, thank god my mum didn't choose to remove my thumb! its nice to know i can lead a perfectly normal life but i'm still extremely shy and afraid of showing people my hands which is hard as you have to use them to do everything every day. I consider myself lucky thay you cant tell i have DS in my eyes and that i dont have to wear glasses all the time to keep my eyes straight.
happytobeme on January 18, 2013:
Like many of those who have commented I encountered teasing as a kid. To compensate I had a face turn to the left. As I aged, the eye drifted outward even more due to scar tissue and I began to have some neck issues. I am in my late 5o s and just had surgery on Monday. I am thrilled with the outcome but do understand there is the possibility that the eye may return to its earlier position.
My advice is that if it really bothers you, find a good eye surgeon and give it a shot. I wish I would have found my doc sooner, he is fantastic. To me the very small risks are worth the outcome so far. I will continue to share my progress.
ewa ledeboer on December 17, 2012:
hi, thank you for your blog. my baby boy, 18 months old, was diagnosed with duane's syndrome yesterday. the doctor told us not to worry and not to think about it as a disability. my friend says that a little squint is very sexy, lol. well i hope that duane's will not cause my son to be bullied but it will teach him to love others and treat them as he would want to be treated.
best christmas wishes to everybody :-)
Ronald Wintrick on December 10, 2012:
I'm best selling author Ronald Wintrick. Eight best sellers. I have DS. It sux but I cope. I smoke mary j for the headaches.
kim on September 24, 2012:
hi, I have the same condition , I was wearing glasses sine 3 yrs of age I am 28 years old now and My same doctor after 20 years finally reffered me to a speialist to run some tests and found that I had duanes as well , But , and it suks I never had the surgery beause he assured me that within 1-5 yrs it can come right back , I cant see with 3d glasses either lol I think it was the worst thing growing up , when I had to close each eye and seen just blue or red lol , well I also have to turn my head slightly , or hate the people that say why dont u look at me when i talk to u , people hardly notice now at 28 i learned to deal with it , but sometimes I get bad headaches too , but I love how u explained this HUB ,
teena willis on July 31, 2012:
thanks so much for the info. My granddaughter has Duane's syndrom which was diagnosed at 11 months. Every year her eyesight continues to worsen, because of compensation, her depth perception is not very good either, which causes her some clumsiness. At 10 years old she's becoming very aware of her need for thicker glasses. Are pepole with Duane's syndrom able to wear contacts ?
Paul on June 19, 2012:
Just wondering if anyone has or heard of Duane Radial Ray Syndrome or Okihiro Syndrome? They are associated with Duane's but there are other anomalies that are linked with it. Such as heart defects, hearing loss, hand/thumb/wrist anomalies, etc...
moonlake from America on June 15, 2012:
You have had lots of comments on your eye condition. Good hub lots of information. I put one up on my eye condition and barely got any comments so I figure there must be very few people with it. Maybe my hub is just bad. Anyway your hub is good. I voted up.
Denise on June 13, 2012:
I am 54 years old and until recently have gone through life with a "lazy muscle" in my left eye. Only recently during a routine eye exam did the optician ask me if I had heard of Duane syndrome........which I hadn't. I can't understand why no one had mentioned this before but now at least I know I am not alone. Your article rings true to me in so many ways......thank you.
Half Deaf on May 21, 2012:
Hi! I was happy to find this because I have Duane Syndrome. I am 15 and it has been very unpleasant throughout school. Now, I joke with it. Once, I went to the ER after falling off a horse, and my ER doctor did the "Follow my finger" thing, and I freaked him out. He thought I had brain bleeding. After that, I kind of made it a joke. I have learned to live with the right eye not going right, but I am also one of the ten percent of people who have deafness as a result of Duane Syndrome. I am completely deaf in my right ear. That has been more of an issue. My friends have gotten used to it. They help me cope for the most part, but there are always gonna be those certain people who will try to tear you down. I would rather have a few rude people than the sympathy card all the time though. I live with it, so why can't they? Doctors have been talking about surgery for years and now are serious about it so I can drive better.
rick on May 18, 2012:
There is a book called disconnected kids by Dr. Robert Melillo page 123
In the book it explains which eye is connected to parts of the brain (left side or right side).
It is the brain that is imbalance and the stronger part of the brain is what makes that eye stronger as the stronger brain ignores the weaker one. It is hard to explain.
There is also eye test and eye exercises to strengthen the weak eye or brain.
Hope this helps at least understand how the eyes and brain are connected.
Sara on May 12, 2012:
Please join our group.
elf on May 09, 2012:
I'm 24 with duane's I in my left eye - compensating for this as a child resulting in a strong head tilt and poor posture, which I am still working to fully overcome; these days it is mostly just the head tilt that I can't seem to get past (maybe for the better aesthetically; people don't seem to notice? or they are too nice to say anything), but the stiffness in my neck has been driving me insane lately, and it is still very difficult to square my shoulders. Beyond this I am generally happy, outgoing person. I did struggle with depression through high school and even through early college, and while there may have been many contributing factors, I do believe much of it was linked in some way to the Duane's... and an overall sense of low self-esteem.
To the worried parents out there: I recall the doctors telling my parents that there was no cure and I would adjust naturally. And while they mentioned therapy as an option, they did not seem to think it was necessary (or even effective) and that was the extent of the advice given. I'd recommend just watching your child carefully and working with them on their posture if you notice that they are over-compensating. I used to be unable to run fast or long because my body was so out of balance; doctors told my Mom that I had scoliosis. I was never really aware of this nor bothered to try and fix it until college - these days my back looks and feels much straighter and I cringe when i look at old photographs. I wish someone would have tried to help me out when I was young! rather then assuming nothing could be done. So be supportive, parents! Good luck and stay strong everyone! I'm sure that we will all have perfect eyes in the next life.
Elizabeth on April 26, 2012:
I am 40 and just ha a muscle surgery on my left eye. I was never diagnosed with DS back in my country so I lived with this allmy life until I moved to the US and start going to mane eye doctors. On of the many I went told me that I shoudl go to a pediatric ofthalmologist as this is a born syndrome and they are specilist for it. If you are a grownup visit a pediatric this is a 7 minutes procedure to you muscle straighten your eye but it is not 100% fixed as there is not cure for this syndrome :(
cherrio726 on April 18, 2012:
I'm 16 and have class A Duane's, but in my right eye. I have a slight he's tilt, and my vision in the affected eye is perfect, while my other eye is nearsighted. I was teased in elementary and middle school, but high school has been fine. I've considered surgery in the past, but since my case isn't severe have decided against it. It's become a part of who I am, and I don't think I'd be the same person without it. Driving hasn't been a problem, except for the fact that I can't drive a two-door because the windows are too low and I have to strain to see out of them! The only problem with sports that I've had is spotting while turning in dance. I've started to notice my neck and back hurting more and more, but haven't considered Duane's to be the reason of the problem. It's always nice to know that you're not alone, no matter what your situation, and that there are people who haven't had surgery and have been fine. Thanks for sharing!
Miro on April 10, 2012:
Do you know is it possible to have eye disease which makes world mirror world for you. My old teacher once told me about it. But I never checked it out.
anasim on April 09, 2012:
I have the same issues except for the eye not being centered. And the double vision. Is there s surgery for it?
Kathy on April 07, 2012:
I have Duane's class C in my right eye. I also have an injury to my left eye that resulted in strabismus and for many years my double vision was attributed to this injury alone. Duane's was not diagnosed until college. I have double vision most of the time and have prisms in my eyeglasses to help me fuse my vision. I am in my late 40's now. I am not sure if it from the Duane's or from the injury, or a combination, but driving has become more and more of a challenge. I avoid highways, as I cannot stabilize my vision quickly enough for merging traffic. In fact, I avoid driving faster than 40 mph! This is very frustrating. I also find the patch very necessary. I have vinyl clings that I cut out and put over one lens of my glasses (I need glasses, and since both eyes have issues, I have avoided any surgery, including Lasik). I have a wonderful low vision specialist who recommended an opaque contact lens. I work with computers and this lens has been a lifesaver! I also find I cannot watch TV without covering one eye (I find covering my Duane's affected eye most helpful). I have no useable peripheral vision, and have only seen 3D occasionally. I still judge distances very poorly. It is especially painful to look up, and ordering in any kind of fast food place is a real pain, literally! I have gotten used to people looking at me weird as I cover one eye and squint to read the menu. One thing that always astounded me was before I found my low vision specialist, all my ophthalmologists had vision tests projected too high up for me to see, and they had no way of lowering it! I also find the new light bulbs to be be very hard on my eyes. Another challenge has been finding optical departments that are willing to make your lenses 3 or 4 times. If it is not exactly right, I cannot see! One eye is lower than the other and eye measurements are critical. As I age, my eye muscles continue to weaken, and I now have about 4 different pairs of glasses for all different uses: driving, computer work, reading, and general use. Actually, when doing up-close work like reading or sewing, I now find it easier to take off my glasses. When people ask me what Duane's syndrome is, I simply say, "my eyes don't work together, and I see double." I am surprised there are so few sites that discuss covering one eye. Such a simple solution. My eyes tire quickly regardless, either from having to fuse my vision all day or from using only one eye. I am blessed to live close to work and in a city where I can get anywhere without once driving on a highway! It has been a challenge, but then everyone has challenges. This is ours!
Paul on April 05, 2012:
My son is 8 months old and has just been diagnosed with Duane's Syndrome. He also has a twin brother that has no symptoms at all. It has been a long two months since we realized their was something wrong with our baby boy. It wasnt his eyes that concerned us, but his hands. We noticed that his thumbs appeared a little different and asked our pediatrician about them. He has hypoplastic thumbs, which means his joints are underdeveloped and dont bend completely. After meeting with a orthopedic doctor, genetists, cardiologists, radiologist, and finally opthomolgist, Duane's was diagnosed. We also found out that he has a right aortic arch that isnt really a concern for the cardiologist claiming his heart looks great. I was just wondering if anyone else with Duane's has experienced any of these other symptoms? Also, it appears that he has it in both eyes and looks forward perfectly. Reading these blogs have given me SOO much comfort and insight in knowing how this disorder will impact his life. Again, through these posts, you show and share your stories that will inspire others with Duanes/family members to live fruitful, meaningful lives. I would like to thank you all for sharing your stories that have given me so much comfort. THANK YOU ALL!!!!!!!!!!!!! Here is my personal email email@example.com if you would like to give any other advice to a concerned parent raising a child with Duane's and how I could assist him as he learns, develops, and interacts with others.
carina3 on April 02, 2012:
My daughter is 4years old, with Duans S. It is her left eye. I also found this hub very inspiring. I think about how it will be when she starts to read and write, where she should sit in the classrom, sports.... Thanks for writing all this!
Debs on March 30, 2012:
My 4 year old daughter was diagnosed today with Duanes Syndrome, it appears it is in the right eye and is type 1? I am desperate to find out more about it and have found this hub very interesting, thanks
Vikki on March 28, 2012:
My 3 year old grand daughter has this syndrome in both eyes. We are seeking help via Meta Medicine if anyone is interested. Blows your mind!
hightide68 on March 23, 2012:
Just posted above my email is firstname.lastname@example.org
Gary on March 23, 2012:
I have Duane Syndrome, at least I think I do. I am 58 yrs old, male. Just found out what it is called. After all these year's. Went to a eye doctor when I was 8or9yrs. old. Not much came of that. I was to young to know. I think there was nothing they could do. What are my symptoms? My left eye will not look left or outward. It is a little off centered when I am looking straight ahead. When I am looking straight ahead my head is very slightly turned I have noticed. Just a few degrees. No problem up or down in both eye's. Right eye is normal. I don't see double unless I make my self see double. That is looking straight ahead and crossing my eye. I don't see double when I look to the left, although my left eye isn't looking left. But I do feel it is seeing a little towards the left and not just straight ahead. I don't get neck or back pain from it. I avoid looking towards the left at someone, if I do I turn my hold body or my head so I am looking straight at them. Certain position's in life can be hard like dinner tables and talking to the person on your left. I just try and turn my hole body. I favor looking slightly to the right when talking to someone. I have no problem reading. I close my right eye and try to force my left eye looking left. I feel it's an excersize I do. Don't no if it benefits from it. Some people notice I have an eye problem and some don't. If I am around them long enough they do. I favor wearing sunglass's during the day. I wish there was a fix, but I have learned to live with it and at least I can go out and watch the sunset with all it's color and walk to it and drive to it and hear it. God bless you all. Some day I'll have perfect vision.
Ting on March 19, 2012:
My 1yr old boy was diagnosed with Duane Syndrome yesterday. Comments and stories really Helpful. Thank you
Lauren on March 14, 2012:
I myself have duane syndrome. When I was younger it was confused with a lazy eye and for months I had to wear a patch over my right eye to strengthen the muscles in my left eye. I recently was fired from my job being told I was "overly emotional" because my assistant manager rudely asked if I was on medication. When confronted by my g.m. to protect herself she said "I didnt mean does she take medicine for her moods, but what I meant was does she take medication to correct her eyes" I was appauled. Not only was I insulted once, but twice. My MANAGER SAID NOTHING in my defense. Afterwards I never worked well with her and ultimately I lost my job for not being a "team player" I am twenty five years old.. I deal with stares, whispers, ignorant reactions to my eyes not moving correctly. I continue to fight my self-esteem although Im told by the people I love and friends that Im beautiful and because of the way I angle my head its hardly noticable. Will they ever find a surgical cure for this?
Brian on March 13, 2012:
Hey everyone! This information has been awesome to hear about! I am 20 years old,m and have DS in BOTH of my eyes! I am unable to abduct (look outwards) with both eyes. Since it is in both eyes, it is generally less noticeable than if was just in one eye. Besides a VERY slight inturn of both eyes it is unnoticeable, and have never had anyone wonder about it, or question me. Having DS in both eyes makes me among the 2% of DS patients that have both eyes affected, and I have learned to accommodate for my very lacking peripheral vision by turning my head. I have to be very careful to check my blindspost while driving, as even though I can see in my peripherals, I cannot focus on anything in them.
The most challenging aspect of having both eyes affected is reading. I have to move my head to read as my span of vision can only read about 3 or 4 words before I cannot focus, so I look pretty funny when I read. DS has resulted in a lot of neck pain for me, as I have to move my head like 90% more than the normal person. I see a chiropractor weekly for this, which really helps :)
Marc on March 12, 2012:
Hello I have a question for people afflicted with Duane Syndrome, just like the author of this hub, if your Duane doesn't allows you to move outward (horizontal movement), can you move it to secondary positions (diagonal, up-left or down-left)?
Aaron on March 11, 2012:
Went to a new eye doctor today and was told that I have DS. I'm 30 years old and have lived that long without people telling me specifically what this condition is or that it even has a name. For the longest time I've been told I was lazy eyed. One doctor would tell me I have astigmatism and then another would tell me that I don't.
My right eye is affected which apparently is even more rare and has limited ability in looking in and has almost no ability in looking outwards. What's interesting is how my right eye has perfect peripheral field. It's as if my eye and my brain has learned to adapt and compensate for this condition which is why I've been able to maintain total binocularity except for objects that are directly in front of my face which at that point my vision begins to cross. On the other hand this is also why no one's ever diagnosed it because I've always passed peripheral field tests so doctors just ruled it out as a lazy eye. Throughout my life I've encountered people who are crossed- or lazy-eyed and somehow I knew that mine was different from either one.
Part of me is relieved to know that that I'm not the only one with this condition and that it even has a name. Like most people with DS I've learned to compensate for this by turning my whole head to the right or winking my right eye when I have to look quickly to the side to avoid crossed vision and to keep people from freaking out when they see my right eye cross and retract into its socket. Otherwise I have a perfectly normal right eye which has even learned to compensate and adapt over time.
larissa on March 07, 2012:
I also have DS and it disturbs me socially. I am very sad about it but it was what God wanted for me. Sometimes I think I'll get depressed thinking about it much because I'm shy to make many friends and someone to notice. I think I give much importance to it because I'm 17 years old and there is great pressure for you being sociable and outgoing. I confess that I have not much difficulty in hiding, in fact almost nobody notices. I was very happy to find this blog because it really helped me psychologically, and I had never seen anyone with this same problem
Cindy on February 22, 2012:
Good blog. I am 45 years old and I also have DS. I was first diagnosed with it at 6 months of age. When I got older, my parents decided against surgery because my left eye (the effected eye) was midline, and I had learned to compensate very well by turning my head. When I was old enough to decide for myself, I also chose not to have surgery.
My opthamologist, a wonderful guy, told my mom early on that with Duane, if the patient's affected eye is midline or close to midline, they usually have binocular vision (they don't see double looking straight ahead). However, with Duane, you can't cut both eyes to the left and right like most people can. A person with Duane Syndrome must turn their whole head from side to side in order to look at something with binocular vision. It is during this head turn that other people notice something is wrong, and usually they think you're "cross-eyed", because they see one eye turn normally while the other eye either doesn't move at all, or it has an upshoot or downshoot until they are looking straight at whatever they turned their head to look at. My doctor told my Mom that most people with DS could live a very normal life. However, socially, especially in childhood, it could be an issue. Kids can be cruel. So he suggested that she have me sit in front of a 3-way mirror and practice closing my eyes before turning my head to either the left or right, so that they are closed during the head turn, then opening my eyes after turning my head. My Mom took his advice and when I got old enough, she explained DS to me, and explained how I would be starting school one day and that kids can be mean if they see anything different about someone. So I practiced...in front of the mirror; at the dinner table when everyone was talking to each other (people expect eye contact when they are talking to you); everywhere we went... I learned to close my eyes, turn my head, open my eyes, and make eye contact in one fluid motion, until it became second nature. I didn't have to remind myself or think about it.
By the time I started school, I was so good at this, that hardly anyone had any idea there was anything wrong with my eyes. The only time anyone noticed anything, was when I was extremely tired, and failed to completely close my eyes while turning my head. If they asked, I just told them the truth. I did have some people ask if I was deaf or hard of hearing in one ear. It took me a while to figure that one out. Finally, I realized they thought I was turning my "good ear" toward them to hear better...LOL.
One thing parents may be stressing over is whether they should consider surgery for their child or not. I personally wouldn't consider having surgery done early on. There is no time limit for having the surgery. One major concern would be making it worse. If they aren't experiencing visual impairment, and they seem to be able to compensate well so that they aren't suffering from any serious social factors, I would leave the decision up to them when they are old enough to fully comprehend all the pros and cons. That is what my parents did and I chose not to have the surgery. I'm 45 now, and I don't regret it. I might also mention, my doctor's son is my opthamologist now. He asked me last year if I had changed my mind about having the surgery. "It's not too late," he said. We both laughed. No...no regrets.
Minal Lemos on February 13, 2012:
My Daughter has duane's syndrome. Your article is very inspiring. Need to connect with you, as i need special guidance in upbringing her. Please share your personal ID or you can write to me at email@example.com
Katrina Roebuck on February 13, 2012:
Hi my husband has Duane's too but his eye goes out toward his ear he has been told all his life that it can't be fixed glad to hear your story and outcome. He is now 32 and is going to have another exame in june. Can you see as good or better after the surgery?? Do you have any problem now after it that you didn't before?
Billy on February 09, 2012:
Hi, I a found these stories to be inspirational. I do not suffer from D.S. but from estotropia. Both eyes work independently but not together. When I move my eyes, one moves and the other one does not. It was not something I noticed until a couple years ago when I saw some of my pictures. It definitely made me self-conscious.
More recently, in a children's class I teach, a new girl said out loud, "Why are you looking at the wall!?" I was mortified! Adults more than likely had noticed but were too polite to say anything. But children have no filter and many have not seen this before. I cannot look people in the eye and talk to them for more than a few seconds and one eye wanders. This makes it hard to teach and be a "people-person." And I have noticed people looking behind them when I talk, probably thinking I am looking at something behind them. It is frustrating to say the least.
I have considered surgery but have not done it for a few reasons: 1)My eyesight itself is almost perfect. I only have trouble reading small print and don't have any pain at all. I don't want to risk my vision being impaired. 2)Cost 3)I have asked a few of my female friends who have known me a long time if they ever noticed. I was shocked to hear that they said they had not. I was gauging to see if my condition would turn off any potential mate.
I posted also because I would like to find a group and discuss issues with people who have this. Any suggestion is welcomed. I don't know anyone who has this. Thanks!
D'angelo on February 08, 2012:
I Didnt Know So Many People Had This Problem, I Have It Too, Im Also 16 years old, I Was Suppose To See A Surgen Today But They Rescheduled I Wanted To See If Anyone Got The Surgey Done Before... I Have A Girlfriend And Was Shpcked Wen She Told Me My Eyes Looked A Different Way. A Week After I Went To See The Eye Doctors, They Told Me I Was Jus Realizing I Had It I Remember Getting Made Fun Of It Sometimes But Not To The Point hey Madee Me Care. I Wanted To Get Rid Of It But I Heard You Can Go Blind If The Surgery Goes Wrong Is It True?
Mark on January 25, 2012:
Always interesting to find another DS sufferer. Both of my eyes are affected, but I'm lucky in that the "set point" for both of my eyes is straight ahead, so I only see double when I try to look to either side. As a little kid I thought everybody saw double when they looked to the side. I just naturally learned to compensate by turning my head. The only time I really notice it is if I am reading when I am really tired. I have often wondered, though, if my ADD, which is caused by problems in an area of the brain near the neural nucleus that doesn't form right when you have DS, is related to my DS.
firstname.lastname@example.org on January 25, 2012:
i am now 66 years of age and like you was born with duanes syndrome . i was lucky i was never bullied ,and although it bothered me at times ,having to move my head so people would not see me crosseyed has never caused me great problems . in the early days doctors did not seem to know about duanes ,and in fact had an op in my twenties as an eye specialist thought i hah a restricted muscle that need cutting . needless to say op was of no use. !!! in my thirties a specialist gave me the correct diagnosis ,. nice to have a name and know that a few others out there also have the same .
have been considered attractive all my life and if anything turning my head apparently has been considered a nice quirk ,and the fact that i prefer to look people straight and look at there eyes has been mentioned in a nice way .
happened to come across your blog today after deciding to look up duanes after many years .
have enjoyed reading your comments ,as feel we have led a similar path
Matt Hammer on January 24, 2012:
I know how you feel. I too have duane's syndrome. It affects my left eye turning out. Imagine how hard it was to play baseball as a kid and be a right handed batter.
Kristen F on January 22, 2012:
I also have Duane's. I'm 20 years old and I had surgery at age 3. I still have to do the head turn slightly because I have double vision looking straight on.
Before age 3, I had to turn my head all the way to the side to be able to see. My parents say I would trip and fall a lot because I couldn't focus on where I was going.
I am very glad they decided to get the surgery for me, for it is barely noticeable now. I have the habit of turning my head to the side in order to talk to people next to me. It probably appears odd to them when we are sitting very close. It gets the job done though without people noticing my disorder
Nav on January 21, 2012:
Thanks so much. It feels good to know that someone understands what I've been through. I'm 24 now, was born with DS and not many people notice it. I was teased at school but nothing after that. Live life to the fullest don't let this bring you down. It's nothing compared to some life threatening diseases.
jamie r on January 20, 2012:
i have a qustion for all. do contacts help?
Allyson on January 17, 2012:
Wow, I am overwhelmed. I am 33 with scoliosis, Duane’s, headaches and neck and back pain. I have asked doctors in the past if they thought there was any connection between Scoliosis and Duane’s but have not gotten any answer about it. It’s interesting to me to see there are several people dealing with this (especially since Duane’s is so rare). I was not diagnosed with Duane’s until I was in my mid twenties. I was suffering from horrible headaches and met with several neurologists and doctors that then led me to a specialist at John’s Hopkins who diagnosed me (I am not a fan of that doctor). I was diagnosed with Scoliosis at age 13 and ended up getting Anterior Spinal Fusion Surgery at age 18 (my curve is also rotated which caused some discomfort and cosmetic issues). I have also had three separate eye surgeries (one in 2nd grade for strabismus correction) and two later in life after the diagnosis of Duane’s (2005 and 2010). I just met with the surgeon this past week since I haven't been feeling well (things are double and blurry) and he basically told me I regressed (in just a year and half) and am worse than I was prior to the surgery. I was devastated. He also told me things will get worse with age and recommends more surgery but has no explanation as to why it failed twice before. I have an appointment with a different doctor for a second opinion later this month. I do not feel like the eye surgeries have helped me and I continue to struggle on a daily basis (getting worse as I get older). I have chronic back, neck and hip pain and work with a pilates trainer once a week as well as a massage therapist every other week. This offers short relief but ultimately the visual stimulation causes me to tense up again fairly quickly. I have managed to overcome a lot and run a successful business and have an great marriage and social life but I do fear things getting worse. I do agree that strength training (especially core muscles) is a big help as well as massage therapy but my question is has anyone found relief for their vision? My doctors can’t seem to get that everything is connected so they are only focused on treating the one thing they are specialists in which in turn is not very helpful. Thanks in advance for listening to my story and I appreciate any response back.
erin on January 16, 2012:
I have Duane syndrome though mine was diagnosed when I was three. I don't have to do constant head turns and deal with it. I had a training doctor diagnose mine since he had just finished a paper on it, and to fix the seeing double and the "head turns" my eye doctor recommended a special type of glasses that keeps me from seeing double. I am nineteen and I don't have any problems with my syndrome anymore due to the help of glasses. It is a scary thing, but there are ways to cope without having the head turn
Jamie R on January 15, 2012:
my name is jamie and i am 19 years old and i have ds and untill today i was scared to death cause i had no idea what it could be i was to scared to get it looked it because of what it could of been but this is the first thing i have read on it and i feel so much better that i am not alone. but now i can move on and feel better about it but i wish u all the best and lets hope they can find away to fix this!
Mary on December 30, 2011:
I am in my 30s and have DS. This problem, for me, just keeps getting worse and worse every year. The eye specialist says it shouldn't, but it certainly has. She also told me that she has only had a handful of people in her many years of practice with this condition, so she really can't know too much about it. In the last few years, my eye has started turning outward less and less. It has gotten so bad that I can't even look straight anymore, and I used to be able to. So, now my head tilt is a constant thing rather than just on occasion. Worse than that, I live in pain (headaches, neck pain, shoulder pain, back pain) everyday due to this. I have read that many others do also, especially beginning in their 20s or later. The pain, frustration, helplessness, and worsening problems are almost more than I can bear anymore. It is really hard to function on a day to day basis, even to get out of bed in the mornings. I have tried many different suggested options to help, but nothing seems to. I wouldn't wish this problem on anyone. As a child, my only worry was people making fun of me (which did happen, of course). Now, that would be the least of my worries. The pain just never ends.
kalimu on December 29, 2011:
Thanks for posting about DS, I can relate. My son and I both have DS. He's seven and I am 43. His old eye doc said that DS is not genetic. I asked "how is it that we both have it then? She insisted that it is not genetic. Well I took my son to see Dr.Horton and UCSF medical center. He enrolled us in a study and they are now saying that DS is genetic. They also said that because of the new information, they are closer to finding a cure. I'm sure that does not mean that we'll all be cured tomorrow, but I think that it is good news all the same.
Jimmy on December 28, 2011:
My 9 yo daughter also has DS in her left eye. She was also born with another rare birth defect which thankfully wasn't serious. It was taken care of with a minor surgery when she was still an infant. Does anyone know if other issues can go along with DS? It's just worrisome that she was born with two rare genetic defects. If so email me at email@example.com
Marc on December 27, 2011:
My name is Marc and I am 25 years old. I have DS in both eyes. For me, both eyes can only look inwards and not outwards. I had surgery at a very young age and don't remember it at all. It was nice to read your stories and hear about others out there with this condition.
It has never really affected me playing sports as I have always been very athletic (skateboarding, hockey, golf, baseball, martial arts) although I think it is more noticeable when playing sports and occasionally people will comment on it.
I feel self conscious of my condition sometimes but try not to let it bother me. I wish everyone dealing with this condition all of the best. Make the best of the things you can control and don't worry about what you can't control
If anyone wants to talk, feel free to email me. firstname.lastname@example.org
ally on December 26, 2011:
i have the same condition i'm 16 and i want to become a model but im afraid of taking pictures cause of this condition :$ it is in my left eye as well and i cannot turn it to the left and my left eye always looks smaller?
i heard the very same comments ("cross eyed") when i was younger even today occasionally and it sucks. i just make excuses like "i have something in my eye" or "it's just allergies"
i really enjoyed reading this as now i know i'm not alone...here's to everyone who has this condition! just remember we are special and unique because of it :)
josie on December 07, 2011:
I was born with Duane Syndrome. Im almost 12 now and all my life i was poked and prodded, videod and many photo's were taken off me. At my local hospital, im one of the main reasons my docters even know about it. Im very wary of myself and i do get noticed at school alot, get pointed at. This makes me worse. DS effects my balance, hearing and concentration. If i look to the left, the left eye stays and i see double. My left eye-lid is also covered up so you cannot see it. Surgery is now becoming an option now im older, but it feels very comforting to know im not the only one with this condition. Im greatful that you can post this information as i feel more confident to know im not alone in my suffering, Thank You (:
Jaceeka on November 27, 2011:
I was diagnosed with Duane syndrome before I was a year old. I'm now 34 & it is a normal part of my life. Admittedly as a child I got the usual comments like cross-eyed, lazy eye, etc. it of course bothered me because kids can be cruel, but as an adult, I rarely remember I have it. Occasionally a younger person or child will ask, but most people either don't notice or are too polite to mention it. My eye sight is near perfect and I do not have to wear glasses. I'm the only one in my family with this condition.
Becky O'Brien on November 25, 2011:
Its so good to hear others have this condition. I am 18 years old and have just started my first year of uni. I had always accepted my eye problem and from a young age realised that people suffer from much worse things in life. However, as I am reading more than I have ever done at uni, I have started to notice my vision is decreasing and my left eye has moved further towards my nose. I can live with my eyes looking slightly odd to other people but this change in position has meant my vision has decreased and I am getting frequent headaches. I have researched the operation available to try and help the eyes. Has anoyone had it done? Any advice on the op will be great! Thank you :)
Brett on November 17, 2011:
Yay! I am not the only one on the planet with duane syndrom. I am a twelve year-old boy and enjoy to read, play guitar, and play video games. With my duane syndrome, people at school are constantly calling me cross eyed, and saying I have a lazy eye. My response is always the same, "I know what I have, and you dont so leave me alone". My real problem with duane though, is that I have a hard time focusing my left eye, so it takes me longer than most people to read, or when I am looking at things (like the neck of my guitar) up close, my left eye starts to pain me. My real question here is, does anyone know if there is a special type of lense that will help me with focusing my left eye? I would really be appreciative of any feedback, thanks.
Maisie on November 15, 2011:
I'm 20 and was born with ds! I would never have surgery as I'm such a wuss and to be honest I have never been bothered by it! After years without patches I'm having to start using them again as my vision is getting worse! Anyone got any words of wisdom? Also does anyone else have the ds smile squint? X
MomaDonna on November 10, 2011:
My baby girl was diagnosed today with Duane's at age 10 months. I have been crying all day, until I found this. Thank you to all who've responded and told your story. It lets me know the different possibilites in her future and what I need to do to support her as a parent. I know longer feel hopeless.
Alexis on October 29, 2011:
I have DS as well. I had surgery to correct it at 11 months of age. I still get double vision when I am trying to read something, say, on the tv. It gives me severe headaches, which is not fun. I also cannot see 3D. I've got a smartphone with 3D capabilities but never use it because I can't see 3D!! It's frustrating how some new movies are coming out in 3D only, and I end up paying extra for something I cannot even see. So I pay $3 extra to wear some stupid glasses so that the screen looks the way it normally does in 2D. Yaaaaaaaay. Even though I had the surgery to correct my eyes, there are still some limitations. I would really love to correct the double vision, and reduce some of the headaches!
Maribel on October 20, 2011:
It's me again w the 9 year old boy. I'm so proud of him. He plays soccer, plays violin, loves to read, over all a very happy boy that moves life.
maribel on October 20, 2011:
Hello my son of 9 has RE. I noticed when he was born. It wasent diagnosed until one. His 1 visit to eye dr. Was very difficult for us. He was diagnosed so fast. The Dr. Was fascinted. We get him checked 1 a year now. He has a head tilt since a baby has never completely gone away. Now that he's 9 he understands, he doesn't want the surgery. He says he's a bit diffrent and that's ok because no one is perfect anyway. I just wish more can be done for him. Picture day came at school I got to see the picture and you can really see his eyes. In one u can notice him slightly crossed eye. In another his left is not centered and in another his head is tilted. He has mild DS.
Jenni on October 19, 2011:
My two year old daughter has DS. She was diagnosed at one year of age. She has a "classic" case of it. Hers is not as severe as some of yours. She can't move her left eye outward. I noticed something "fishy" with her eyes when she was a baby. Took her to an eye doctor and they said she would out grow it. My husband never noticed it. At her first birthday I got a picture of her eyes doing it! Took her to an eye doctor. They had me start patching her right eye "good eye" and we have been patching it since....basically to teach her to turn her head left. Recently we had to switch eye doctors (closer to home) and the new eye doctor said NO to patching it does nothing. So now I am thinking of getting a third opinion.
I am very worried about how this may affect her as she gets to school age (reading, etc).
Thank you everyone for posting. Most of your stories made me cry and some of you are very inspiring and not letting anything hold you back!
Jodi Lane on October 19, 2011:
It breaks my heart to read some of your posts. Kids can be so cruel when anyone is slightly different. I too have Duane Syndrome. It affects my right eye which can't move to the left. To see straight I have to turn my head which gives me terrible back and neck pain. My right eye is also slightly smaller than my left which bothers me cosmetically. I love reading all of these posts because I have never met anyone with Duane Syndrome.
I am 23 and have made it through school and college fine. I did not understand DS when I was young and just thought I could do something cool with my eyes. In high school I do remember a few mean comments about being cross eyed. I went to the doctor today for a consultation to have surgery to somewhat correct my surgery. I am very hesitant to get the surgery because there is no guarantee of it fixing my eyes at all. I am actually afraid I may end up worse off than I am now! Any suggestions?
I hate having DS sometimes but then I think of all the people who can't see or walk or hear or who have other debilitating diseases and I realize I am so blessed to be able to function somewhat normally! If any young people are struggling with their DS or being made fun of-I would love to talk to you! Thanks for all the posts guys, it's nice hearing from people who understand. ; )
Tracey on October 13, 2011:
I have DS and have known about it since I was very young. For many years it didn't affect me with my vision.....yes I had the cruel jibes from kids, hence loved school for the work but hated it for the people.
I was a shy child consequently and didn't have many friends. But then the unthinkable happened...my eye muscle expanded one day when I was singing my heart out in choir practice (always over compensated by trying to do well at everything)and my left eye was stuck in the corner of my eye.
To cut a long story short, DS was little known about in those days and the Doctor didn't have a clue. In the end took my dad insisting on a second opinion and ended up at Birmingam Children's Eye Hospital. I had an operation which was successful and my eye has been good for years.
Until the last 5-6 years when I have noticed and felt a difference in my eye. In the last 2 years this has got worse and now I am convinced my eye is on the move again.
So off to the docs again and eye specialist, but shit scared it will go again without warning one day.
Would really like to know if anyone knows if anyone has gone through surgery twice for this....think I already know the answer to it as a UK doctor told me a second surgery would be highly unlikely, but just wanted to see if anyone knew a case.
Just praying at the moment it doesn't get worse as remember the hurt of people's comments and looks, and the surgery wasn't good either.
ChaosBZ on October 10, 2011:
LONG ONE HERE:
I'm 39 and have had DS since birth. Nothing was ever done about it. In college
I was finally sick of people looking behind them when I spoke to them due to my
head tilt - I was looking at them but they thought I was looking behind them...
So I got prescription prism glasses which did nothing.
Fast forward to now. I'm a 5th grade teacher, married, awesome kids, great
social life, etc. But my students always look behind them when I talk to them -
my annoying head tilt...
I used to have 20/20 vision, but that has gone down hill faster and faster with
each passing year - my affected eye leading the charge by a mile. The DS hasn't gotten worse, but my left eye's vision has.
I've had it! I can't play baseball: batting is impossible; golf also. I've
been playing guitar for a couple of months now, but my neck gets so tired and
sore turning too far to compensate for my DS affected vision.
So I tried playing with an eye patch. Wow. Even though I use reading glasses
and sometimes regular (non-reading glasses), my vision is clearer with a patch
over my bad eye. I tried wearing the patch while not playing guitar, and minus
some disorientation, I think it is better this way.
But I'm wearing a freaking patch...! Still, it might be preferable over always
breaking eye contact with people due to my eyes crossing, or stressing about
seating arrangements, or getting very frustrated when people look behind them as
I talk to them.
I'm NOT getting surgery - the thought makes me sick. But then again, I am so
sick of DS. I HATE it. It affects my daily life always - for 39 years! And
there is no cure - my eye is more a nuisance than anything and it will only get
worse if the trend continues.
So... any advice? Will wearing a patch really screw things up for me? BESIDES
LOOKING LIKE A PIRATE...
Ok, so I'm being dramatic. But still, if you have DS you know what a huge pain
it is. I feel at this point, an eye patch is preferable.
Might as well finally draw attention to my bad eye in a better way. I am so
sick of the looks people give me when they notice something is off. I am so
sick of all the photos of me with my head at an angle. I am so sick of not
being able to talk with someone on my left side and appearing to lack confidence
as I continually look away instead of twisting my head way too far or looking
Please share advice. Is this just a stupid idea? Will wearing a patch make
things much worse? Or am I onto something? You are the first group I can vent
to - finally people who understand what it's like! Thanks for reading