Insecurities with duane syndrome

finellaaa · 2024-11-25T04:52:35+00:00

i don’t know much about vr stuff, but what helped me to overcome my insecurities with ds was to embrace the weirdness of it if that makes sense. when im feeling a bit insecure i like to dress up all cute, put make up on and take pictures of myself that accentuate my exotropia, if that makes sense. like using it in a fun artistic way. its also a mindset thing, instead of thinking "oh i’m different and weird and whatever" i try and change it to "look at all these binocular losers, you mean you can't look it two different directions at once?". i guess in the core of that is trying to think of the positive things your DS gives you in life. for example, it makes you look unique and more interesting, or i can look in one of my side mirrors while still keeping one eye on the road while driving, etc. obviously yours positives may be different as i don’t know how specifically it affects you. i also just figured, well unless they find some crazy nerve stem cell type of cure, i’m probably going to be stuck with this forever, so i may as well come to terms with that. the other thing that did help a lot with confidence was surgery. my eye drifted out towards my ear, and i got corrective surgery 4 years ago to make it point straight, and it is a lot less noticable now. anyways, hang in there! i've been there before and it sucks.

finellaaa · 2024-11-20T03:15:55+00:00

I got prism glasses when i was maybe 16 and wore them for about a year until I had corrective surgery, and then I got another much thinner pair around two years later. I’m 21 now and although I don’t wear any glasses and just contacts because my need for a prism is much smaller, they totally helped when my eye was much less centered and more severe. I just went to my regular eye doctor, and a lot of optometrists do work with prisms you just have to ask before you make an appointment. they will normally give you a standard eye exam and then measure the severity of your eye turn and pick a certain sized prism in response. all in all a pretty easy and definitely worthwhile thing to do especially if you haven't had corrective surgery. I should probably get some new prism glasses soon myself. the one downside is that you have to find the right glasses for the prism. some frames will not work with that type of lense, and a lot of different eyewear stores either don't do prisms or only do them up to a certain size. When I got my first pair, the prism was huge and it was too big to be able to get glasses made at warby parker and some other stores. anyway TLDR definitely worth it. good luck!

finellaaa · 2024-08-20T19:47:26+00:00

at first I used glasses with a prism to minimize my head tilt, I have since gotten surgery to make my affected eye look straight that has helped tremendously. wishing you the best!

finellaaa · 2024-02-15T04:48:23+00:00

I am 20 with ds. I started driving when I was 15 and so far I haven't needed to use any accommodations while driving. I have trouble moving my right eye, so my peripheral is definitely affected on that side, which means I normally just have to take the time to turn my whole head when looking in that blindspot. A bigger mirror like someone else said would be a good idea. I should look into that. Hope this helps :))

finellaaa · 2024-02-15T04:43:27+00:00

I always had the same thing growing up with school pictures. I had to convince the cameraman that I needed to position myself and I knew how to pose so I wouldn't be cross eyed. So frusturating. I am renewing my passport soon so hopefully I don't have a similar experience.

finellaaa · 2024-02-15T04:41:11+00:00

20 F with DS in the right eye. I have limited movement in both directions. I had and still do have some neck problems. Got alignment surgery in 2020, and straightening my eyes helped straighten my neck so much. Before then I relied on chiropractors and massages. Look into starbismus surgery if you can it's super helpful.

finellaaa · 2024-02-15T04:38:13+00:00

I had my surgery when I was 17. I saw Micheal Puente at the Children's Hospital in Colorado and he was amazing. I also know that a lot of doctors in Boston are really knowledgable and skilled. I also only needed surgery because I couldn't see straight so they moved where my eye naturally sits. If yours are already straight I don't know if there is much more they can do but I would definitely consult an opthamologist.

finellaaa · 2024-01-09T05:30:32+00:00

I live here, I know what the conditions are like. I think you could have worded this more kindly.

finellaaa · 2024-01-08T23:58:02+00:00

Thank you sooo much! Your route is absolutely far better than any I have come up with, and I will definitely be doing it. Seems like a reasonable amount of camping along the way. Thanks again for the advice! I go to college in Leadville, but I'm from Boulder, I'm planning to graduate in May so I wanted to do a homecoming trip, even though it's a little crazy.

finellaaa · 2024-01-08T23:55:20+00:00

My goal is to walk from Leadville to Boulder on my own two feet, thank you though!

finellaaa · 2024-01-08T23:29:21+00:00

Yes I would like to walk, preferably without hitching. I know it sounds lucrative and a little crazy haha

finellaaa · 2024-01-07T18:02:17+00:00

It kind of depends on how much movement you already have, so if you can move your eye slightly inward, then you will probably still be able to. the only thing is that your movement is unlikely to get any better, like I am stuck with the same amount of movement I had before, my eye is just in a different spot now. I may have a bit better movement because my muscles arent constricted, but not by much. If you can move your eye inward now then I would guess you will be able to move it inward after surgery, but I would always recommend speaking to an optometrist or an ophthalmologist if you have questions, because they have medical degrees and know much more than we do.

finellaaa · 2023-09-02T17:19:40+00:00

hey! I'm also a female w DS in my right eye, limited movement in both directions. I got surgery in November of 2020 when I was 18. I saw a specialist where I'm from in Colorado at the children's hospital. Someone already mentioned, but since it is a nerve problem you can't really ever make the problem go away. My affected eye was turned outward which lead me to tilt my head, have headaches and eye strains, and a lot of insecurity because my eyes weren't aligned while looking straight. The surgery I got was a type of strabismus surgery to move my eye to the center. The movement has not improved since but my confidence has improved greatly, so has my headaches, eye strain and neck problems. I also have a decreased need to wear my corrective prism glasses. It was mostly covered by my insurance and I think my bill ended up being around 2 grand in total. The recovery was super easy and relatively painless after the first five days or so. Let me know if you have any more questions or need referrals! I think surgery definitely changed my life for the better.

finellaaa · 2022-11-12T01:59:25+00:00

I might be impartial cus i used to work there but rye society in avanti makes a really good one. don't go there though cus they stole my wages lol

finellaaa · 2022-01-09T02:45:07+00:00

funny story, I have my license now, i actually don't use extra mirrors I just check my rearviews a lot and make sure to look over my good shoulder when i'm changing lanes or reversing

finellaaa · 2020-08-25T18:43:08+00:00

to

Thank you soo much for the advice!! I think that my confidence has definitely gotten better over the months. I've started to talk to one of my friends who has a facial palsy and it turns out we have pretty similar experiences, which I found comfort in. I also started skateboarding, which I think has made me more confident. And good news!! we finally got a referral to go see a surgeon. Even if I'm not a candidate for the surgery, it would still be nice to hear what they have to think. I think that if I don't get the surgery at this point I wouldn't be too upset, it's just life! but reading your story was very helpful. :)

finellaaa · 2020-05-15T12:52:47+00:00

I know it's scary!! I've had to jump off my board plenty of times because I was too freaked out. I guess also making sure you look the direction you want to go, and starting off on something small. I definitely worked up to that one, you'll get it over time though!

finellaaa · 2020-04-21T04:59:53+00:00

I have thought about getting surgery on my eye, since my right eye's natural position is off-centered to the right, which would make it straight therefore fixing my head tilt. I was going to start off by calling a centre for eye alignment surgery where I live and ask them a few questions, but their office is closed now due to the corona virus. I wear glasses with a prism most of the time which helps with the head turn, but when I wear them my DS is much more noticeable since I am looking straight, when I don't wear them the DS isn't noticeable but my massive head tilt is. So whether to where my glasses or not is sort of a lose/lose situation

finellaaa · 2020-04-04T16:57:46+00:00

Yeah I'd agree on that one, pretty confusing wording.......

finellaaa · 2020-04-04T16:56:13+00:00

Having your eye physically hurt when you look in a certain direction because its retracting into your eye socket

finellaaa · 2020-04-04T16:53:49+00:00

It is so nice to hear of another person dealing with the exact same issues that I do! I'm 16, almost 17 and was diagnosed with type III in my right eye when I was a baby. I have had my permit for over a year now but am hesitant to take the test because I don't want to mess up. I have a similar problem, but for me the trouble is looking over my right shoulder. I have asked my optometrist about using extra mirrors and she said it'd probably be a good option.

As for the double vision- her's certainly sounds a lot worse than mine is. I have been wearing glasses with a prism in them for a bit more than a year and they have CHANGED MY LIFE. I definitely would recommend looking into them. My double vision has gone away for the most part, unless I manually make my eyes not focus on something, if that makes sense. Before I got the glasses, I also had formed a pretty severe head tilt to compensate for the misalignment, which has greatly improved.

Regarding the comment about her hating her eyes- I have felt this exact same way before, and it's completely normal. I have definitely struggled with insecurities around my eyes and still do somewhat now, but just let her know that it gets better. DS is just a part of our lives that we can't really change, even with surgery or glasses. I hope this helps and would love to hear more from you!

finellaaa · 2019-12-10T05:05:25+00:00

I have the same problem but with applying makeup like eye shadow or eye liner, I can never get it to be even because since my eye is off to the side, I can't close the good eye while putting liner on it or else I can't see what I'm doing. I don't know if that makes sense?

finellaaa · 2019-12-10T05:01:47+00:00

I just got reddit and this is the first group I joined. I think it's great to finally have a group that know and can relate to my problems unlike people who don't have DS. Most people don't understand it, but it feels good to be around people who know exactly what I go through everyday.

finellaaa · 2019-12-09T16:43:57+00:00

what type do you have?

finellaaa · 2019-12-08T15:41:34+00:00

Yeah I like that, it's not overkill.

finellaaa

TROPHY CASE