Strabismus support

Need some support?

Yahoo offers a number of support groups for strabismus, including our own Eyes Apart Strabismus Support group. Eyes Apart Strabismus Support is “A place for adults, teens, and parents of children with Strabismus (squint, crossed eyes, lazy eye), to discuss knowledge, experiences, problems, and ideas related to Strabismus.”

Doing a search for “strabismus” at Yahoo! Groups brings up a number of groups. Try the search here.

If that link doesn’t work, click:
Yahoo! Groups
and type ‘strabismus’ (without the quotation marks) into the ‘Find a Group’ box.

[This page updated 10/23/06]

21 thoughts on “Strabismus support”

  1. Dear all,

    Iam suffering from lazy eye and squint. My age is 31yrs. I was already operated once when i was 18. but with in 6 months squint came again. I am looking for botox injection or neurovision treatment in singapore.

    I will be grateful to you if anybody mention some information regarding this

  2. Hello, I am a 33 y/o that has struggled with Strabismus my entire life. I have exotropia with my left eye which wanders out. I have had a total of three surgeries my last one being in 2000 (7 yrs ago) which was successful. However, over time I am back at the same place as I was seven years ago. I just went to the specialist and I was given prisms to start with..again. My muscles are fighting during the day to stay straight and by the end of the day the eye is staying “out” resulting in double vision and severe headaches. I am in a total of 6 prism. The Dr. wants to leave surgery..again.. as a last option b/c the risk of overcorrection is greater and my eyes turn in a bit when I look up close so I would most likely need bifocals to correct that deviation. The Dr. asked me to give the prisms a few weeks adjustment period. I have had the prisms for a few days and I am still experiencing a bit of double vision and headaches. I was wondering if there is anyone out there that has experienced this (getting prisms and adjusting to them.)

  3. Was just wondering around cyberspace and I found this!

    In reply to Amy, I’m a 21-year-old who has been wearing a prism for my right eye since 2 years back and it’s been hovering between the 3-2prism.

    Initially it’s hard to get used to; you think your vision is obscured, and sometimes you get headaches as well. But I find that it helps to train my eye to focus, even if the treating process is awfully slow.

    What I find hard to get used to is feeling self-conscious whenever I head out wearing my prism, anyone has that problem?

  4. Hi, I am writing for a bit of support and guidance. My daughter had 5days of high fever (105F) in Jan 2010 and a little after I noticed her eye seemed very slightly off. Then 3wks later the esotropia was very noticeable, though intermittent and the strange thing was that it was worse when she woke up and then would straighten over a couple hours. Our Pedi optho had never seen this pattern before, nor many of the other PO’s he had talked with. The Pedi optho intially was hoping it was accomodative esotropia and overcorrected her w/glasses of 2.75+, even though her nonatropine read was +1.75 and +1.5. Over the next 2months her eyes improved and we didn’t notice the crossing hardly at all. The pedi optho felt is wasn’t accomodative but just the process. He did not think a fever could have caused this. However in May my daughter had another fever and her eyes started crossing again, at first it was like before 20diopters far/30dpts near and intermittent, but then 3wks later her rt eye was turned in by 40-50diopters and more her rt eye than left and the glasses made no difference. The strange thing is that again after a few hours of being awake the eyes seem to straighten. Our PO is perplexed and wants to follow this since she is straight some of the time. He does not think she has ambylopia yet, but suggested we patch one eye in the am for 15-30min and the other eye in the pm after her nap when it crosses again and try going down on the eye rx to +1.75 and +1.5. He doesn’t want to consider surgery as her eyes are straight some of the time and he feels things are still presenting.

    I am just afraid things will just continue to get worse and wish I could figure out how to stop this. We are so sad that it seemed to improve and then a 2nd fever made it much worse. We are so afraid that after every illness things may worsen.

    Has anyone experienced this? We don’t know how best to help her.
    Thanks for your help.

  5. Annu, you may get a helpful comment here, but the best place to post your question is in the Eyes Apart Strabismus Support email group. Scroll up to the original post, which provides a link to that group.

    I wish you and your daughter the best.
    Lois

  6. I don’t know all the technical terms but I have had crossed eyes since birth. I had two surgeries at a young age, one cut the inner eye muscle and another time the outer muscle. It was a success from a cosmetic standpoint. With corrective lenses and on a perfect day (very well rested / no reading etc) my eyes will remain straight enough that I can have casual conversation with most people not knowing. I just have to be careful to not look them in the eye too long and constantly shift focus away.

    My eyes always made me feel inferior growing up…I’m 26 now and still fighting the same battle. I do have friends that accept me for who I am but I feel crippled. I don’t want to have to go into work and look at people and I don’t want them to look at me. I don’t want to go out in public any more. I don’t want to go on another job interview and have to look at someone else for that long. I would really like to meet new people, I just wish it could be in the dark with everyone wearing sunglasses.

    I have dated but I have no confidence and no self esteem…the last person I was with told me my eyes were part of the problem for why there was a split. It reminds me of a Spanish movie called Motando Cabos. There is a part where a character who has strabismus is made fun of – he has a flash back and it goes from him being made fun of in school as a child, being ditched by his date on prom, and then being left at the alter by his bride with the priest saying to him “what did you expect, you’re a cross eye.”

    I guess that’s how I feel sometimes, “what do I expect, I’m crossed eyed.” Destined for a life of solitude, isolation, and bitterness with little to no hope of improving my life emotionally or financially. I could really care less about improving financially, it’s the emotional aspect that really hurts me.

    I was out one night with some friends and a stranger had pointed out that my eyes were crossed. I felt crushed, I just wanted to disappear. I walked away and looked in a different direction the rest of the night without speaking another word…I was far from home but contemplated jumping off the deck I was on and just running, not necessarily home but just far away from other people. I thought my eyes were straight at the time, how could they have deceived me again! I was able to leave shortly after that happened so I did not have to remain awkwardly looking into space for too long ignoring everyone.

    Perhaps this most recent incident I had (although one of many) coupled with my failed relationships and lack thereof for the past 4 years has given me a dose of much needed reality…that “I am cross eyed and what do I expect” – that this anguish will never stop, that I may never find peace until I am rotted away.

    On a brighter note – I always try to stay positive which can be hard to do. Despite my cynical views detailed above I want to offer some insight for perhaps a younger reader that there is always hope and life is what you make of it. You can’t change other peoples feelings but you do have the power to change your own. It’s ok to feel hurt and all these other emotions…it’s just important to recognize them and act on them so that you can make a change for the better…my plan is to carry around a flash light and shine it in peoples eyes so they can’t look at mine.

    I enjoy reading other peoples stories and wanted to share just a piece of my struggle. I would love to hear how other people cope on a daily basis and if they have any advice.

  7. Hi, Michael
    I’m 43 and a cross-eyed person, too. I know what you’re going through. I teach English in a highschool. I hate it. Teenagers can be very cruel when they discover some sort of vulnerability in their teachers. I can see them laughing and it’s not even behind my back. They simply don’t realise that I’m actually looking at them and see them laughing . It’s a nighmare. So, what can I say, I do feel for you… I’m suicidal most of the times but do my best to keep on smiling – I have a daughter who still needs me. Stupid me – I thought that having a child would improve my life. In fact, I now feel compelled to keep on fighting – she still needs me, and I have to prolongue the agony… I just think about ways of killing myself as painlessly as possible…
    Warm hugs,
    Lumi from Romania

  8. Lumi, I encourage you to click the link for our email support group at the top right corner of this page. It’s the purple box Yahoo groups box, it will take you to the page to join our group. You will find many understanding people there.

    Seek help from a counselor in your area for your suicidal thoughts. If professional help is not affordable or available to you, please seek help from a minister or spiritual leader, a counselor at your school, a trusted friend, a family member, or someone who can help you through this. Get medical help, and let your doctor know that you are suicidal.

    Your daughter needs you. She is worth living for.

    Please click “Home” or “Archives” in the blue bar at the top of this page and browse through this blog. You will find many articles that will encourage you and give you hope.

    Don’t try to do this alone. Tell someone in your area of Romania that you are suicidal and that you need help. Find someone who will listen and be there for you. You can do this. Find someone to help you through.

    Find someone else who needs your help, and be there for them. You will discover how valuable you are as you see the harvest of your investment in someone else’s life. It’s a wonderful feeling. When you help someone else, you help yourself.

    Best wishes,
    Lois (admin)

  9. Lumi: Have you investigated the use of Botox injections into the eye muscle for strabismus? This was the first use for Botox actually, and is given to lots of people who have this problem including children. I had surgery for an outward turning eye 6 months ago, and unfortunately after the surgery I was left with an inward turning eye. I had my first Botox injection at the hospital yesterday, and I believe it takes a few days before one can expect to see any results. I will update how it goes. I may look into the possibility of having a prosthetic contact lens made if the Botox doesn’t work for me, which I would wear when going out and meeting people. These are available for people who have damaged eyes that surgery cannot help, and are individually made for each person to match eye etc.

  10. Dear Lois,
    I am writing you because I have a kid, a 17 year old boy, who has strabismus. We have been told by two different ophtalmologists that he should not be operated upon before he reaches 21 years of age, in order for the surgery to have the best results, since he is still developing right now. Then, after some time this very same doctors told me that there is no problem if he is operated now. I am confused and doubt if they just want the money, or technology has advanced, or what. They were so categorical affirming one thing first and now the opposite. Of course, my kid is desperate and he very much wishes to have his problem corrected. I do understand his feelings, and I suffer with his suffering. Nevertheless I panic about the idea of operating him at the wrong timing and for the wrong reasons. I care for his well being, both emotionally and physycally. I would love to see him happy and confident, then again I want to do what is right and best for him for the long run, which probably is waiting until he is 21. What can you tell me about this? I will really appreciate your advise.

    Thanks a lot,

    Leo

  11. Leo, there are differing opinions among doctors as well as among specialties. Hopefully others will reply her in the comments, sharing their experiences, but I’d like to invite you to join our email support group as well. Just click the purple “Yahoo groups join now” box at the top of every page on our site to read more info about our support group and to join if you like. You will find a bunch of people who have experienced surgery as well as vision therapy (which is another option you might want to try first.) Some had surgery as infants, and others, like me, were later on in life when they had surgery. Some have had great success with surgery and/or vision therapy, others not so successful. I encourage you to connect with us there and get a broader spectrum of options and ideas.

    Of course your child’s doctor is always the one to ask for specific advice, and if your doctor is not giving satisfactory advice, you may also want to get a second opinion. I’d suggest he see an Optometrist who provides Vision Therapy as well as a surgeon. There is usually some conflicting opinions between the two specialties, and you will still have to make choices, but you will be better equipped to make those choices once you explore both fields. You can use the link on the sidebar of our site to find a vision therapy Optometrist. Ask those in our support group their experiences with this also. You’ll find lots of help there.

    Hope this helps!
    Lois

  12. Thanks a lot for your prompt reply, Lois. Your answer certainly helped me, and calmed my anguish. I will certainly join your group and encourage my son to do so as well. Thank you again and congratulations for your kindness and solidarity.

    Leo

  13. You’re welcome, Leo. I’m not real active in the support group right now, but you will find caring people there. You can also search the archives for specific things. See you there.
    Lois

  14. Hi everyone. I’m 14 years old, and have had strabismus since I was three. I’m very lucky to have a twin sister who has it as well; finding someone who understands makes a huge difference. I like to think that if the only illness/defect I have is a crossed eye, I’m very lucky. It doesn’t threaten my health, which I’m thankful for. I had surgery at three years old; it has had an affect, but I still have a noticeable turn. I’m wondering if it’s worth having another surgery, and at this age.
    Strabismus can affect you’re confidence. I pretend like it doesn’t affect me, and people then realise it’s doesn’t make me ‘special’, and it doesn’t lessen my quality of life. Find someone who understands; that’s the key! Good luck everyone 🙂

  15. You have a great attitude, Monique. 14 is not too old to have a second surgery. I was decades past that when I had my first one! If you are thinking about a econd surgery it is definitely worth looking into, and keep up the great outlook no matter what!

  16. how is the person,s life with squint

    i do not enjoy this life because i dont get attention ,no respect,i am a centre of entertainment,everyone makes fun of me ,my wish to be attractive smart is vanished and i get depressed ,i cant even had a girlfriend,so whats the point in living ,i cant even upload my photos on fb,i fear cameras ,my self esteem is low,i cannot be confident at the interview ,my eyes pain a lot,and frequent headaches while sitting on computers.
    this is my life with squint .i get frustated when i see attractive people because i lack personality .

    i am not enjoying this life ……………

  17. Ganesh, I encourage you to join our Eyes Apart strabismus email support group at Yahoo. You are not alone. Share your story there and you will find others who also have strabismus and experience the same problems you have. Some have had successful surgery for strabismus, others have found help with vision therapy. You will find encouragement in the group. Just click the purple Yahoo Groups button in the sidebar.
    Lois

  18. I’m 16 an the first time I posted on here was last year. I’m back here today because I know people here could possibly understand.
    How can I accept the fact that I have strabismus when all I hear everywhere is people bashing us. (Tv, family, just people in general) I’m old enough to know that people in this world can be really cruel, but what about the 6 or the 8 year old with strabismus hearing all of that. It’s insane to me. ( i also have a kid in one of my classes just like me. i try to avoid looking at them because it will just remind me of how i feel about myself, if that makes sense. people at school think I’m slow or something and due to my lack of self esteem and confidence I can’t seem to stand up for myself. Anyway I am proud to say that I was so close to getting surgery last year (literally they already had the needle in my hand) but I paused and said wait no I’m just going to learn to accept myself the way I am. Im still proud of that decision and will never change it, but I can’t say I fully accept myself. Over the past year I have gotten better with it but I’m not where I wanna be. To deal with being in public I’ve resorted to covering one of my eyes with hairstyles. (The hairstyles gives me more confidence but when they’re removed so is the confidence) having my hair this way helps with people who are meeting me for the first time. people who know about it still tease me and stuff. I also feel bad about covering it because I feel like it cripples me in a way but how else am I suppose to go out in public without being the center of attention. Even though its hard I know I will eventually learn to fully accept it and not worry about anyone who has something negative to say about it.

    Ps ( I’m not thinking about dating until I accept it fully so Any advice for how I should bring up the subject when the time comes.

  19. Alexis, I commend you for both the courage to get “so close” to the surgery and the courage to back off and “learn to accept myself the way I am” when you had doubts. Neither choice is necessarily good or bad but it helps to sort out these thoughts.

    Surgery is not an absolute guarantee. It helps some people, some are not helped, and in some cases it can make things worse. It isn’t always permanent. Sometimes it has to be repeated. If you do decide at some point to consider surgery again, you may want to read my friend George’s list of questions to ask your strabismus surgeon. You’ll find that link under “Special Support Helps” in the sidebar.

    But like you, some feel they would not be true to who they are if they have strabismus surgery. so here are some thoughts about that. Strabismus is not just a cosmetic problem. It usually presents, at least to some degree, as a mental problem for us also. People with strabismus often get depressed about their eye, or obsess on how they look to others. Strabismus can cause double vision for some. Strabismus can hinder our visual focus, affecting our academic abilities, work performance, and social presence. Just as many, if not most, would probably opt to have surgery to, say, straighten a crooked leg so they can function better, there is nothing wrong with having strabismus surgery to straighten a misaligned eye so we can function better.

    But do give your statement, “Even though its hard I know I will eventually learn to fully accept it and not worry about anyone who has something negative to say about it” a fair shake. Some have accomplished that. Many have not been able to. But if you can, that may be the best choice of all unless your strabismus causes vision problems other than amblyopia. Amblyopia is not corrected by strabismus surgery but double vision and the ability to focus your eyes if you do not have amblyopia can be helped with strabismus surgery.

    Another choice is vision therapy. Most insurances do not cover it, and depending on where and how you have it, it can be expensive. It is done by a developmental (aka behavioral) optometrist, usually in the office at first, but many of developmental optometrists provide software for doing it at home which is less expensive. Check the link in the sidebar if you want to find a vision therapy doctor in your area.

    Finally, do what you are comfortable with, but don’t be too hard on yourself. Don’t force yourself to accept one choice or another. Focus on accepting who you are as a whole, not just accepting your eye. When you are with people, focus on how you can help others be comfortable–not with you as much as with themselves, because we all have things about ourselves we feel uncomfortable with at times. If you can help them be more comfortable with themselves, they will be more comfortable with you.

    You have a good attitude and good goals. Work toward your goals, but don’t hold yourself to anything. Be willing to make changes in your goals if needed. In some cases a change or two could be “being true to who you are,” also.

    About “not thinking about dating until I accept it fully so Any advice for how I should bring up the subject when the time comes”… Well if you are able to “accept it fully” before you think about dating, then you will probably know just what to say when the time comes!

    I also invite you to join our Eyes Apart email strabismus support group at Yahoo…just click the purple box on the sidebar to learn more.

    Hold tight your goals, but not so tightly you can’t change them if needed, and be your beautiful self!

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