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Forum -> Children's Health
Does anyone have/know a child with duane syndrome?
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amother


 

Post Wed, Jul 17 2013, 9:43 pm
Did they do surgery? Which ophthalmologist did you use? Did you also use him/her as the surgeon? Were you happy with the results? Would you recommend others to do it? How old was the child when you did it? Did the child also want the surgery done, if applicable?
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amother


 

Post Wed, Jul 17 2013, 10:03 pm
I am an adult with duanes syndrome. I had surgery in John Hopkins by Dr. Guyton. He was a real shaliach Hashem. I can give you more info if you email me as I would rather not out myself with my screen name here. My anonymous email is medicalinfoplease@gmail.com

Hatzlacha!
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amother


 

Post Thu, Jul 18 2013, 2:41 pm
So can you post as amother?

What made you do surgery as an adult? Would you have done it as a child?
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amother
Lawngreen


 

Post Mon, Feb 20 2017, 8:11 pm
bump
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amother
Burgundy


 

Post Mon, Feb 20 2017, 8:26 pm
I was the poster that wrote about the surgery in Hopkins. I had surgery for a few reasons. Firstly, I used to get headaches because I had a pretty dramatic upshoot in my left (affected) eye. I also had to turn my head more frequently to compensate for the restricted movement outward. I also did it for cosmetic reasons. My eyes look dramatically different today than they did before I had surgery. I am still left with a lazy eye (which is common with duanes) and have limited vision (I am legally blind) in that eye.

I would surely have had surgery as a child, however we did not have too many options as far as surgery was concerned as a child. In fact, for some reason, it seems as if my case was a bit unique and I know I am in one of Dr. Guyton's medical journals as a case study. Something to do with the amount of muscles on each side etc. Nothing I understood or cared to.

I endured a tremendous amount of teasing as a child. I was called Chinese, blind etc. If there was an option for surgery I would have jumped at the opportunity. Unfortunately it took a long time to find a doctor willing to operate. B'h we found one and he was successful.
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JAWSCIENCE




 
 
    
 

Post Mon, Feb 20 2017, 9:24 pm
I have Duane's Syndrome, no doctor ever recommended surgery because I am so mildly affected. However, I seem to be a lot less affected than the above amother. I cannot move my left eye all the way to the left but I learned as a child to move my head more to compensate. I have no abnormal up or down movements. I do not get headaches. I have normal vision in that eye other than peripheral. Never teased and most people do not even notice unless I tell them. No cosmetic issues. There would have been way more risk for very little benefit to my having surgery.

You need to see some specialists and find out how much of your childs vision is affected. That is what my mother did for me.
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amother
Burlywood


 

Post Tue, Feb 21 2017, 2:16 am
DS has it. His ophthalmologist said surgery isn't worth it because he's operated on people with worse conditions and the result was improved but less than ds is currently. Also by ds it's a nerve problem and not a muscle problem so you can't really operate on that.
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amother
Powderblue


 

Post Tue, Feb 21 2017, 5:28 am
So weird that I opened this thread because I actually didn't have a clue what duane syndrome is but after reading this I've realized that I've noticed this issue on my 1-week old. At first I thought the other eye was cross eyed but now I see that it's more that this eye doesn't move outward.

At what age can this be diagnosed? And how is it done?
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amother
Burlywood


 

Post Tue, Feb 21 2017, 5:58 am
amother wrote:
So weird that I opened this thread because I actually didn't have a clue what duane syndrome is but after reading this I've realized that I've noticed this issue on my 1-week old. At first I thought the other eye was cross eyed but now I see that it's more that this eye doesn't move outward.

At what age can this be diagnosed? And how is it done?


I'm pretty sure that's too young to diagnose, sometimes little kids look like they're looking at you funny or cross eyed but it isn't
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amother
Powderblue


 

Post Tue, Feb 21 2017, 10:38 am
amother wrote:
I'm pretty sure that's too young to diagnose, sometimes little kids look like they're looking at you funny or cross eyed but it isn't


I know it's too young to diagnose I was just wondering when would be the earliest age they could. This is not my first and I know what newborn's eyes are like, I noticed something straight away didn't look right. But I'd be very happy to be proven wrong and worrying for nothing! But over the course of today I've been looking closely and his right eye never moves right...
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amother
Burgundy


 

Post Tue, Feb 21 2017, 11:07 am
amother wrote:
I was the poster that wrote about the surgery in Hopkins. I had surgery for a few reasons. Firstly, I used to get headaches because I had a pretty dramatic upshoot in my left (affected) eye. I also had to turn my head more frequently to compensate for the restricted movement outward. I also did it for cosmetic reasons. My eyes look dramatically different today than they did before I had surgery. I am still left with a lazy eye (which is common with duanes) and have limited vision (I am legally blind) in that eye.

I would surely have had surgery as a child, however we did not have too many options as far as surgery was concerned as a child. In fact, for some reason, it seems as if my case was a bit unique and I know I am in one of Dr. Guyton's medical journals as a case study. Something to do with the amount of muscles on each side etc. Nothing I understood or cared to.

I endured a tremendous amount of teasing as a child. I was called Chinese, blind etc. If there was an option for surgery I would have jumped at the opportunity. Unfortunately it took a long time to find a doctor willing to operate. B'h we found one and he was successful.


I am this poster, forgot to mention the double vision... I had double vision. I actually ended up having surgery on both eyes to fix that. My left eye sat slightly off center due to the muscle misalignment and caused me double vision when I focused straight ahead (which wasn't really straight for my eyes as one was off center). The doctor actually set my right eye slightly off center too, so now when I focus on something both eyes work in tandem. I marvel at the intricacies of the eyes. When each of my kids are born, I always look at their eyes (I know I know, everyone else looks at fingers and toes, I am the crazy one-even though I am assured that it is not genetic-only a genetic mutation and not hereditary)
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amother
Maroon


 

Post Tue, Feb 21 2017, 12:08 pm
I am wondering if anyone can explain how this can be diagnosed. I just read that there are 3 types of ds. In one type the appearance of the eyes seem to look normal but there is limited mobility of the eye muscles. My child is suffering from eye muscle issues ... reading is progressing at a slow process ...and handwriting is not legible. My child is almost 10. We are doing vision therapy and occupational therapy but we do not have a diagnoses. Only that the eye muscles are very weak -- there is eye pain when we do eye exercises.... now I am wondering if this can be a possible diagnoses?
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amother
Lawngreen


 

Post Tue, Feb 21 2017, 12:13 pm
amother wrote:
I know it's too young to diagnose I was just wondering when would be the earliest age they could. This is not my first and I know what newborn's eyes are like, I noticed something straight away didn't look right. But I'd be very happy to be proven wrong and worrying for nothing! But over the course of today I've been looking closely and his right eye never moves right...


OP here, I noticed it at 2 months old. Whenever I nursed him on my left side, his eye crossed. But I didn't think much of it. When DS started crawling at about 5-6 months old, I noticed that when he was crawling straight ahead, his head was turned slightly. That took me to the pediatrician who sent me to an ophthalmologist. It was diagnosed then, and later again when I went for a second opinion when he was a bit older.
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amother
Lawngreen


 

Post Tue, Feb 21 2017, 12:15 pm
amother wrote:
I am this poster, forgot to mention the double vision... I had double vision. I actually ended up having surgery on both eyes to fix that. My left eye sat slightly off center due to the muscle misalignment and caused me double vision when I focused straight ahead (which wasn't really straight for my eyes as one was off center). The doctor actually set my right eye slightly off center too, so now when I focus on something both eyes work in tandem. I marvel at the intricacies of the eyes. When each of my kids are born, I always look at their eyes (I know I know, everyone else looks at fingers and toes, I am the crazy one-even though I am assured that it is not genetic-only a genetic mutation and not hereditary)

Did you have double vision when looking straight ahead or only when trying to look to the side?
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amother
Lawngreen


 

Post Tue, Feb 21 2017, 12:21 pm
amother wrote:
I am wondering if anyone can explain how this can be diagnosed. I just read that there are 3 types of ds. In one type the appearance of the eyes seem to look normal but there is limited mobility of the eye muscles. My child is suffering from eye muscle issues ... reading is progressing at a slow process ...and handwriting is not legible. My child is almost 10. We are doing vision therapy and occupational therapy but we do not have a diagnoses. Only that the eye muscles are very weak -- there is eye pain when we do eye exercises.... now I am wondering if this can be a possible diagnoses?
IME, duane syndrome was diagnosed by three separate doctors pretty quickly, so while it's not so common, it's not so uncommon that I would imagine your child's ophthalmologist would have no problem diagnosing it.

DS is missing a muscle, not weak.
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amother
Burgundy


 

Post Tue, Feb 21 2017, 12:22 pm
The double vision was when focusing slightly off center or further.
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amother
Lawngreen


 

Post Tue, Feb 21 2017, 12:29 pm
JAWSCIENCE wrote:
I have Duane's Syndrome, no doctor ever recommended surgery because I am so mildly affected. However, I seem to be a lot less affected than the above amother. I cannot move my left eye all the way to the left but I learned as a child to move my head more to compensate. I have no abnormal up or down movements. I do not get headaches. I have normal vision in that eye other than peripheral. Never teased and most people do not even notice unless I tell them. No cosmetic issues. There would have been way more risk for very little benefit to my having surgery.

You need to see some specialists and find out how much of your childs vision is affected. That is what my mother did for me.

Did you ever as a child cross your eyes? I find my son turning head but he crosses also. At the doctor he never crosses, and when I tell the doctor that he crosses sometimes, he said that as long as he has good vision and he also does the head turn, we're good.

She did recommend surgery but it was more like "Why not?" and left the decision up to us. We went for a second opinion and third opinion. One said absolutely do surgery and the other said, no need to do it, it's only for cosmetic purposes and we should reconsider when the child is a bit older and can be part of the decision.

So now I can't decide what to do. I want what's best for my child. Is it best to do it so that he appears normal? Is it best to not mess around with eye surgery when not necessary?
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amother
Lawngreen


 

Post Tue, Feb 21 2017, 12:32 pm
amother wrote:
The double vision was when focusing slightly off center or further.
Aha.
DS told me he has double vision when his eyes cross which is when he doesn't turn his head. He seems to have complete control over his eye movement, IOW, when I see he's crossing, I'll tell him to turn his head and he adjusts. He knows it's not good for his eyes to cross but it's easier to move just eyes than to move the head.

I will ask him at what point from center he has double vision. I'm not sure this is something the ophthalmologist checked at his annual appointments (to monitor his vision). Need to bring it up with her.
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amother
Burgundy


 

Post Tue, Feb 21 2017, 12:49 pm
The problem with constantly turning my head was that I am prone to migraines and the frequent head turning to follow conversations and also to prevent the double vision exacerbated the headaches. Also the upshoot caused my eye to press on nerves on the inside upside of my eye socket causing pressure and pain/discomfort. The surgery did not cure ALL the double vision, but it did cure most. I still see double if I swing my eye all the way to the left. My left eye still does not completely reach the very left but it is vastly improved. It also opens wider than it used to.
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JAWSCIENCE




 
 
    
 

Post Tue, Feb 21 2017, 12:56 pm
amother wrote:
I know it's too young to diagnose I was just wondering when would be the earliest age they could. This is not my first and I know what newborn's eyes are like, I noticed something straight away didn't look right. But I'd be very happy to be proven wrong and worrying for nothing! But over the course of today I've been looking closely and his right eye never moves right...


Babies do not conjugate their gaze until they are several weeks old. If this persists at the one and two month appointment your pediatrician can refer you to a pediatric ophthalmologist. Every baby is cross eyed at times the key is it should resolve with time. In addition if this baby has larger nasal folds it can be deceptive.

Hatzlacha and try and relax for a few weeks.
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