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Author Topic: ...sigh... considering wearing an eye patch full time...for "health" (no pirate)  (Read 772 times)
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Vinda-Lou
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« on: October 12, 2011, 02:02:38 AM »

Pre-post apology for a long post.

I have a very rare eye defect called Duane's Syndrome.  (Figured the cute girl could explain it better than me.)
I generally go cross eyed when looking straight ahead when my head points forward, or when I look to my left.  I get double vision too.  7 out of 10 times, the person I am talking to turns behind them to see who I am talking to - not joking.  As a school teacher, everyday my 10 year old students do that innocently.  I compensate by having a perpetual turn of my head.  Every photo of me has me with my eyes looking at the camera but my head point a bit more than slightly to the left.

I'm 39 now and have had DS since birth. Nothing was ever done about it - only in recent years is there a surgical option.  I do not want the surgery.

In college I was finally sick of people looking behind them when I spoke to them due to my head tilt, so I got prescription prism glasses which did nothing.

Fast forward to now. As I said, I'm a 5th grade teacher.  I'm married, have awesome kids, great social life, etc. 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.

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 at social events (I always enter a room and first look where I can sit without having to look to my left), 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?  By wearing a patch, even for REAL reasons, am I entering douche territory?  I know I have not lost an eye - I just have one that has created countless problems and will never get better.  I might as well not have it!

Ok, so I'm being dramatic. But still, this has been a huge pain my whole life.  Not an hour has passed in my entire life that I have not thought about or noticed my eye defect.  Many people never notice, but others do.  I am lucky that I have gone through life with minimal teasing.  Usually when someone notices, friends or strangers, they look away and a silence falls...  I am so self conscious of this...

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 cross-eyed.

Please share advice. Is this just a stupid idea? Will wearing a patch make things much worse? Or am I onto something?  There are cool websites with cool patches, so I won't look like an old man with a goofy big round eye patch.  But will I look goofy no matter what?

Thanks for reading this loooong post...

Post-post apologies if this all doesn't make sense.  Did you read all that??  There's no way I'm going back and editing that...
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Rowdy
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« Reply #1 on: October 12, 2011, 02:24:37 AM »

My son was born with something very similar, although I can't say if the term Duane's Syndrome was ever diagnosed.  He had surgery at 2 years old.  He still favors one eye, and tilts his head to read or focus on close tasks, although at this point his vision seems to be 20/20 or close to it.  It's unnerving to see him turn his head 45 degrees to read, but when you cover the good eye he can still read perfectly.  I'm very afraid of a situation like you describe for him later in life, though.  I don't think you're being overly dramatic, and I completely understand and sympathize how this might severely degrade your quality of life.

For what it's worth, I'd recommend gathering your courage and going for the surgery.  You're only 39, you have many many more years of life ahead, and even if you choose to wear a patch (which, if you have a valid medical reason isn't douchey at all) surely that's going to have an impact on the long term health of your good eye.  I would be pretty depressed if at 39 I had to give up golf, baseball, basketball, or anything that required depth perception.  If you refuse to consider the surgery, though, then maybe you can try to find a monocle that blocks out the bad eye and go for the Monopoly dude look?
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Vinda-Lou
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« Reply #2 on: October 12, 2011, 02:38:40 AM »

Quote from: Rowdy on October 12, 2011, 02:24:37 AM

My son was born with something very similar, although I can't say if the term Duane's Syndrome was ever diagnosed.  He had surgery at 2 years old.  He still favors one eye, and tilts his head to read or focus on close tasks, although at this point his vision seems to be 20/20 or close to it.  It's unnerving to see him turn his head 45 degrees to read, but when you cover the good eye he can still read perfectly.  I'm very afraid of a situation like you describe for him later in life, though.  I don't think you're being overly dramatic, and I completely understand and sympathize how this might severely degrade your quality of life.

For what it's worth, I'd recommend gathering your courage and going for the surgery.  You're only 39, you have many many more years of life ahead, and even if you choose to wear a patch (which, if you have a valid medical reason isn't douchey at all) surely that's going to have an impact on the long term health of your good eye.  I would be pretty depressed if at 39 I had to give up golf, baseball, basketball, or anything that required depth perception.  If you refuse to consider the surgery, though, then maybe you can try to find a monocle that blocks out the bad eye and go for the Monopoly dude look?

Rowdy, your son will be fine.  Many people like this get multiple surgeries - but the younger he is and the earlier something is done, the better off he'll be in the long run.  I'm sure newer ways to deal with this will come along.  With DS, there is no cure (there are many other eye problems similar, so this might not be your son) at all.  Surgery can help alleviate the head turn a bit, but does not help with the double vision from what I understand. 

Now without surgery or an eye patch, I cannot do well in sports that require looking to my left like baseball and golf.  When the same problem surfaced with guitar playing (I just started this summer - I'm so used to DS that while I dwell on it (dwell on Duane's...) always, it took me a while to realize how far my head was turning left to better focus on the frets.  With the patch, I still turn a bit more to the left than a non-DS person, but when I correct it I do not get double vision like I would without a patch.) I got so pissed off that yet another thing is badly effected by F-ing DS.

Depth perception is grossly overrated according to the linked site.  So far I've had no problems when I wear the patch around the house doing anything.  Maybe golf will be easier...?

Oddest thing about the whole patch business: my wife has NOT said, "Take that silly thing off - you look like an idiot."  Maybe she likes it...?  (She won't admit she does; I asked.)  Better to look like Snake Plisken I guess than Jerry Lewis...
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Punisher
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« Reply #3 on: October 12, 2011, 03:10:09 AM »

I guess it depends on what kind of parrot you will be getting and if you will be adding the peg leg or metal hook at any time.... or you could really freak people out and go full blown Pirate-Ninja.... Then if they give you any grief, give them a shuriken to the eye!

Anyway, do what's best for you...You are the only one that HAS to live with you, so think that way..... (Although pictures will be required if you go full blown Pirate-Ninja)....
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kratz
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« Reply #4 on: October 12, 2011, 03:19:34 AM »

Do eye doctors make a contact lens 'patch'?  Like it looks like your regular eye, but it's actually blocking your vision?  Wouldn't solve the people thinking you are looking elsewhere problem, but if it helped you function...
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wonderpug
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« Reply #5 on: October 12, 2011, 03:48:53 AM »

Quote from: Vinda-Lou on October 12, 2011, 02:02:38 AM

I'm not getting surgery - the thought makes me sick.

My wife, who has had rare eye issues since she was 10, six separate eye surgeries, and countless injections in the back of her eye sockets and in her eyes, wants me to say that you should at least consider consulting with an eye surgeon about what the surgery would entail.  See if you're a good candidate, see what the success rates are, what level of improvement they think they could achieve for you.

You're in Massachusetts, aren't you?  The eye doctors my wife sees for her condition in Boston and NYC are literally the best people on the planet at what they do.  If you would like me to ask for a recommendation of a surgeon in the area for your condition, please shoot me a PM and I would be more than happy to ask.
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Vinda-Lou
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« Reply #6 on: October 12, 2011, 11:58:17 PM »

Quote from: wonderpug on October 12, 2011, 03:48:53 AM

Quote from: Vinda-Lou on October 12, 2011, 02:02:38 AM

I'm not getting surgery - the thought makes me sick.

My wife, who has had rare eye issues since she was 10, six separate eye surgeries, and countless injections in the back of her eye sockets and in her eyes, wants me to say that you should at least consider consulting with an eye surgeon about what the surgery would entail.  See if you're a good candidate, see what the success rates are, what level of improvement they think they could achieve for you.

You're in Massachusetts, aren't you?  The eye doctors my wife sees for her condition in Boston and NYC are literally the best people on the planet at what they do.  If you would like me to ask for a recommendation of a surgeon in the area for your condition, please shoot me a PM and I would be more than happy to ask.

Thank you for the offer wp.  I live in Stamford, CT.  There is no cure or treatment to fix DS, so surgery only helps with the head turn a bit.  Otherwise it doesn't help with double vision or anything - and you still can't turn your eye outwards.  It helps with the head turn.  That's it. 

So that's my dilemma - I don't want surgery to save an inch of head turning.  I would do it if it cured the problem.  From what I've read, other people still turn their head after surgery.  With Duanes there is a principal problem: a non-working eye muscle cannot be converted into a working one just with exercises. Even more, there is no way DS can be circumvented by vision-therapy.  A certain risk with Duanes is that the brain suppresses the picture of one eye in order to avoid double pictures.  This has happened to me, I assume, as my left eye vision has really declined over the years, while my right has been much better.

It is only a slight thing, the head turn, but I think subconsciously it effects people looking at me more than you would think. 

I read this quote on DS posting board: "I have just commented about the concern about looking people in the eye - it is hard, I admit, and I feel that people do not want to look at me if I am in a group, but seem to address their conversation to the other person/people - I cannot find out if my eyes look strange in any way, even though I have asked my friends about this."

That is really what it's like.  It sucks.  Surgery might help a bit, but not too much.  Either way...  The eye patch solution could be cool - and not necessarily forever. 

I will try to talk to a doctor first and make sure I'm not being a complete dumb ass about this whole thing.   I feel that people will look me in the eye more -and me to them more- with an eye patch.  There is more comfort there than maintaining eye contact with a cross eyed person, well possibly. 

Anyway, thanks for reading.


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raydude
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« Reply #7 on: October 13, 2011, 02:12:53 PM »

It depends on the eye patch, color, size, and how you wear it.



I think it could look cool.
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« Reply #8 on: October 13, 2011, 02:33:27 PM »

I was in a car accident in HS that left me with a fractured orbital bone in my eye socket. I had surgery and the end result is that I have limited up and down range in my left eye. When I look straight ahead, left or right (without turning head), the eye works fine. If I try to look up or down, my vision is doubled and as a result, I usually close my left eye when doing so, or have to crane/lower my neck to eliminate the double vision.

Luckily, it is pretty much invisible when I talk to people, but I do notice if I'm sitting, for example, and I have to look up to talk to someone. I feel self conscious about this sometimes, but the reality is that no one notices but me.

Anyway, I wore a patch briefly after the car accident. I don't remember why, really, but the attention was kind of cool.

Though my issue isn't as serious, I feel I can relate a little, if only to say that I can imagine the awkwardness you feel and how much better it would be to just feel normal about your eye.

Good luck, and keep us posted.
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Vinda-Lou
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« Reply #9 on: October 14, 2011, 03:01:52 AM »

Went to the eye doctor today and explained pretty much everything I've posted here.  The short version: he said surgery should be the last thing I do, but even better: no surgery at all.  Good.  Then he suggested a contact lens (as kratz mentioned above), but using the eye machine ("which one looks better: this one or the last one?"  "This one.  Wait, can I see that other one again?") my results showed that I would not remotely benefit from the lens.  Onto other possible ways to get my eyes to work together.  I see two images on the screen through the lens machine, and the doc tweaks it so that I see only one.  Nothing works; the two images never get close.

The biggest shock was that he told me that I've never had binocular vision!  I've never seen the world as other people do!  Somehow, my good eye has compensated and figured out ways to interpret depth, etc.  (Smart little bugger, my good eye.)  This is a reason that the patch works well and I'm able to coordinate eyes and hands so easily when wearing a patch - because it's almost like I've been wearing a patch all along.  My left eye is barely used...  Funny thing, I told him, that I can still see 3d movies with the glasses.  He found that interesting, but stuck to his diagnosis.

He said he actually endorses the idea of wearing a patch.  Not all the time - give my left eye practice so that I don't go all Marty Feldman under that patch.  Sometimes put the patch on my right eye to give the left eye exercise to make up for it being covered.  But nothing will get worse.  If anything, my right eye might get stronger.

So I went out in public for the first time with my patch on.  Went with a buddy of mine, and he mentioned that he did wonder why I turned my head certain ways and now it makes sense.  So off to the supermarket.  Before I never drew too much attention, but now I'm an attention magnet.  Not sure I like it.  A few people looked at me with fear.  Got a few nervous looks from others.  Others smirked.  Maybe I shouldn't start wearing a patch so close to Halloween... 

I'll post a pic with my patch.
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rshetts2
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« Reply #10 on: October 14, 2011, 03:22:02 AM »

Quote from: Vinda-Lou on October 14, 2011, 03:06:29 AM

Yikes! 
Spoiler for Hiden:

Yikes is right, you posted a link to gmail
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« Reply #11 on: October 14, 2011, 04:28:41 AM »

Yeah, we can't see the pic. frown
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Vinda-Lou
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« Reply #12 on: October 14, 2011, 04:32:10 AM »

I'm assuming that's bad.  Don't know why it is - is it a way for people to enter my account easily?  Or something else malicious?  

If so, thanks rshetts2, for posting it for everyone to read, and for then quoting my post with said link, instead of sending me a PM.   Roll Eyes

If it isn't bad... maybe merely bad etiquette, still don't know why, but thanks for the heads up. icon_smile

I deleted my post, since I don't know if I just opened a door into the gmail account...



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« Reply #13 on: October 14, 2011, 04:42:41 AM »

No, it's just a link into gmail. People would have to be authorized.

Perhaps taking the pic from your hard drive, and then attaching it to a post would work for you. smile
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Vinda-Lou
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« Reply #14 on: October 14, 2011, 11:44:02 AM »

Sally after how many years of coming to GT and OO and even GG , I have no idea how to do that!  I'll try from my phone later.
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rshetts2
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« Reply #15 on: October 14, 2011, 12:35:35 PM »

Quote from: Vinda-Lou on October 14, 2011, 04:32:10 AM

I'm assuming that's bad.  Don't know why it is - is it a way for people to enter my account easily?  Or something else malicious?  

If so, thanks rshetts2, for posting it for everyone to read, and for then quoting my post with said link, instead of sending me a PM.   Roll Eyes

If it isn't bad... maybe merely bad etiquette, still don't know why, but thanks for the heads up. icon_smile

I deleted my post, since I don't know if I just opened a door into the gmail account...





Its all good,  Im smarter than that and if it gave actual access, I would have PM'ed you instead.  Sorry to have spooked you.
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« Reply #16 on: October 15, 2011, 01:01:04 AM »

Quote from: Vinda-Lou on October 14, 2011, 11:44:02 AM

Sally after how many years of coming to GT and OO and even GG , I have no idea how to do that!  I'll try from my phone later.

If you hit the Preview button instead of Post, you'll go to the next page with more options.  Click on the +Additional Options... and you should see an Attach: Choose File button to attach your picture to the post.  If you want to attach more than one picture, click on the (more attachments) link.  Like magic.  smile
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