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Thread: I haven't posted in a few years. And I'm still a mess.

  1. #1
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    Jun 2011
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    I haven't posted in a few years. And I'm still a mess.

    Any help with my "back issue" would be greatly appreciated

    Below are five pictures, each numbered with descriptions.

    http://i1188.photobucket.com/albums/...em/bck_pic.jpg

    The way the shirt "fits" in picture 4, with my arms down at my side, looking mildly roundback, though it makes me feel really lousy, I can live with. But of course, I can't go through life with my arms ALWAYS down at my side. One has to raise their arm and extend it, whether to shake a hand, open a door, reach out to turn a key, or grab something off a shelf, etc. And it's what you see in picture 5, the way my scapula sticks so far out when I raise and extend my right arm, and the way the shirt tightly "hugs" and highlights the huge protruding hump, that induces my severe repulsion, that paralyzes me, that prevents me from being able to function in the real world.

    Now women's shirts come in, first, a variety in terms of looseness or tightness. And second, they come in a variety of neckline widths, from a quarter of the way between the neck and shoulders, to half way, to some go right out to the edge of the shoulders, and in each case, affording space in front of and behind the neck, where as men's shirts are all close/tight around the neck (collar shirts, crew necks, and even V necks, which give only some space in the front part, but none in the back).

    newly added image: see how women have a variety of neckline widths: http://i1188.photobucket.com/albums/...ine_widths.jpg

    Five years ago, members suggested I try wearing a kind of wide-neck shirt, called a scoop neck shirt, that might give me more room. I had never heard of a men's wide-neck shirt. A men's scoop neck shirt, I didn't know such thing existed. Members provided links to show me. One link displayed several MEN's scoop necks, but they were sold in Australia. Another member provided a link to Nordstrom. I was so excited! And in 2012, I found and went to a Nordstrom, expecting and hoping to be able to buy scoop neck shirts. Unfortunately, I learned that Nordstrom doesn't sell men's scoop neck shirts IN the store itself. They could be bought from Nordstrom only online and I can't buy a shirt online for a couple of reasons, the most important is that I need to be able to try on the shirt, in a fitting room, to see if it fits. So I left Nordstrom devastated, utterly crushed. (Subsequently, and with great dread and anxiety, I went to a number of clothing stores in the hope of finding men's wide neck/scoop neck shirts, but they just don't carry them.)

    First, let me say, I know you are not doctors, but I welcome any comments regarding my back on what you are seeing from the pictures I posted, and I welcome any suggestions for dealing with my problem. But the most important question I hope to be answered is if you can tell me whether there are any clothing stores that sell men's scoop neck shirts actually IN their stores. (And also if any sell LOOSE-FITTING men's shirts as well). It would mean so much to me, as I am so self-conscious and utterly depressed.

    (Again, if I don't reply in a timely fashion, which could mean hours or even DAYS, please forgive me as I am not always free to reply, or I'm too ill.)
    Last edited by so_shy; 09-18-2016 at 06:44 PM.

  2. #2
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    So shy! I remember you! Welcome back!

    I am sorry you are still struggling so much with these issues. You are certainly not alone in these struggles.

    Have you had a consult lately with an experienced orthopedic surgeon? It would be good for you to know the size of your curves and degree of your kyphosis. Maybe you are in surgical range and could be helped. If not there is at least one surgeon who seems to have a lower surgical threshold for the purpose of saving discs.

    I'm glad you checked back in and hope you stick around.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Quote Originally Posted by Pooka1 View Post
    So shy! I remember you! Welcome back!

    I am sorry you are still struggling so much with these issues. You are certainly not alone in these struggles.

    Have you had a consult lately with an experienced orthopedic surgeon? It would be good for you to know the size of your curves and degree of your kyphosis. Maybe you are in surgical range and could be helped. If not there is at least one surgeon who seems to have a lower surgical threshold for the purpose of saving discs.

    I'm glad you checked back in and hope you stick around.
    Hi Pooka.

    Thank you for the warm welcome back.

    I do moniter my condition visually. I mean, I look in the mirror. I know how I looked years ago. I don't see any change, and if I have, it would be only a few degrees if any.

    But I would have liked to see an orthopedic surgeon (though i realize they would still say I'm not a candidate for surgery).

    The problem is, my parents can't know about it. They are very loving parents, but on this issue, they have never "understood" how much emotional anguish it causes. I learned years ago never to bring it up with them again because when I used to try to explain the anguish, they would reply that I needed to just live with it. They just "don't get it." And if I were to go to an orthopedic surgeon, that would raise alarm bells. I can see them saying, WHY are you going? And, oh not this again, you're still depressed about your scoliosis!

    The last time I was able to see an orthopedic surgeon was the late 90s and 2000 ... because my therapist allowed me to use her office address and phone number when I made the appointments with those doctors. (This way I wouldn't be called at home or get mail to my house.) So back then, I was able to secretly see doctors and they said I was moderate and not a candidate for surgery.

    (just to let you know, I am able to reply now because my parents aren't home ... once they return, I have to get off this website . That's how pathetic my life is.)
    Last edited by so_shy; 08-28-2016 at 11:24 PM.

  4. #4
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    Quote Originally Posted by so_shy View Post
    The problem is, my parents can't know about it. They are very loving parents, but on this issue, they have never "understood" how much emotional anguish it causes. I learned years ago never to bring it up with them again because when I used to try to explain the anguish, they would reply that I needed to just live with it. They just "don't get it." And if I were to go to an orthopedic surgeon, that would raise alarm bells. I can see them saying, WHY are you going? And, oh not this again, you're still depressed about your scoliosis!

    The last time I was able to see an orthopedic surgeon was the late 90s and 2000 ... because my therapist allowed me to use her office address and phone number when I made the appointments with those doctors. (This way I wouldn't be called at home or get mail to my house.) So back then, I was able to secretly see doctors and they said I was moderate and not a candidate for surgery.

    (just to let you know, I am able to reply now because my parents aren't home ... once they return, I have to get off this website . That's how pathetic my life is.)
    So shy.

    I am not qualified in any mental health field. But I am a parent. It seems to me the problem is NOT with you and your feelings but rather with how your parents are NOT helping you. They should be getting you any and all manner of medical help not just for your physical well being but also for your mental well being. Yesterday.

    Please pardon my directness.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    Quote Originally Posted by Pooka1 View Post
    So shy.

    I am not qualified in any mental health field. But I am a parent. It seems to me the problem is NOT with you and your feelings but rather with how your parents are NOT helping you. They should be getting you any and all manner of medical help not just for your physical well being but also for your mental well being. Yesterday.

    Please pardon my directness.
    As I said, I'm middle-aged, and they are now in their "golden years." At this point, I don't want to stress them out anymore. They have been good to me in EVERY other respect. Bent over backwards for me.

    As far as the scoliosis and kyphosis, when I was first diagnosed, they took me to specialists, and they took me a few times a year throughout my teen years to be checked (x-rays to monitor any progression). But in the latter teen years and into my twenties, a few times I tried to express the emotional anguish that having these conditions were causing me, and they just didn't seem to fathom what I was saying. The last time I actually expressed to them this anguish was over two decades ago, and they still just didn't get it, and I felt guilty, ashamed, and haven't brought it up since. But I did discuss it with the therapists I was seeing over those years (psychiatrists, psychologists). I've been on a ton of medications, but nothing short of a straight back, or being able to hide or "mitigate" the condition with clothing will work. And that's what I've been stuck on for over the past 16 years, trying to find shirts I can wear that hide or "mitigate" the horror. Five years ago, members made suggestions. Some I was able to try and some I could not. Those suggestions that I tried didn't work, and I'll share those details down the road (as I said, I'm posting now just to re-introduce myself and my situation, since it's been a few years that I posted here.)

    I'm sad. I'm miserable. I hope posting again on this message board will give me some small degree of relief, as I have no one in the "real" world I can literally talk to, no one in the flesh, that is. And I hope after I describe my failed attempts regarding those suggestions from five years ago, members might be able to provide me with alternate ones.

  6. #6
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    Welcome back!

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
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    Quote Originally Posted by mabeckoff View Post
    Welcome back!

    Melissa
    Thank you, Melissa

  8. #8
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    How many degrees do you have?

  9. #9
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    Quote Originally Posted by flerc View Post
    How many degrees do you have?
    I don't know the exact numbers. In all the years I had been checked, I never paid close attention to the numbers because I was so distraught about the whole situation. I have a vague memory of the scoliosis curve in the upper spine being in the 20s. I can't remember if the last specialist I saw said it was 23 or 28 degrees. I also have no exact memory what the scoliosis curve in the lower spine is (but when I posted a few years ago, I think I said in the mid or upper teens). I have NO memory of how many degrees my kyphosis or lordosis is. Again, I do recall being told each of my curves was moderate, and that I wasn't a candidate for surgery. (As I said earlier, the first chance I get, I am going to take pictures and post them. I just don't have the privacy right now, but I hope within a week to be able to take and upload those pictures.)
    Last edited by so_shy; 08-31-2016 at 06:13 PM.

  10. #10
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    I can fully understand the emotional stress that your Scoliosis causes but you must find out the facts. This way you may be able to deal with the issue.

    Finding out the degree of the curvature will help you understand why surgery is not being recommended. If it is in the 20s that would probably be why they will not operate.

    You do not seem to mention pain problems as much as the physical appearance of your back. obviously it is very noticeable to you but you can get help with dealing with these feelings.

    Do your parents access your pc? Can you buy yourself your own pc or ipad so that you can use without worry. This way you can start making friends on social media and maybe reaching out a bit more.

    I understand that you don't want to hurt your parents but there is no reason why they should be aware of any activity on-line at all.

  11. #11
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    Quote Originally Posted by burdle View Post
    I can fully understand the emotional stress that your Scoliosis causes but you must find out the facts. This way you may be able to deal with the issue.

    Finding out the degree of the curvature will help you understand why surgery is not being recommended. If it is in the 20s that would probably be why they will not operate.

    You do not seem to mention pain problems as much as the physical appearance of your back. obviously it is very noticeable to you but you can get help with dealing with these feelings.

    Do your parents access your pc? Can you buy yourself your own pc or ipad so that you can use without worry. This way you can start making friends on social media and maybe reaching out a bit more.

    I understand that you don't want to hurt your parents but there is no reason why they should be aware of any activity on-line at all.
    No, I have no physical pain from my three spinal conditions. But I do have all sorts of physical symptoms that are all manifestations of the emotional and psychological distress. The emotional pain is chronic and intense. The whole thing has basically paralyzed me in that I literally can't do a multitude of things, some very basic. (If I had to estimate, over the past 16 years and still today, I probably spend 95 percent of my time not in my house, but in MY ROOM in my house. That's what I mean by withdrawn.)

    In the late 1980s and throughout the 1990s I saw several psychiatrists, psychologists, social workers and neither medication or "talk" therapy helped.

    Yes my parents have access to my computer. They rarely use it but they could walk in on me any time, so I have to be careful as to when I come to this site.

    This message board is where I first reached out five years ago, and to where I've returned to seek help.
    Last edited by so_shy; 09-01-2016 at 06:02 PM.

  12. #12
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    Quote Originally Posted by so_shy View Post
    No, I have no physical pain from my three spinal conditions. But I do have all sorts of physical symptoms that are all manifestations of the emotional and psychological distress. The emotional pain is chronic and intense. The whole thing has basically paralyzed me in that I literally can't do a multitude of things, some very basic. (If I had to estimate, over the past 16 years and still today, I probably spend 95 percent of my time not in my house, but in MY ROOM in my house. That's what I mean by withdrawn.)

    In the late 1980s and throughout the 1990s I saw several psychiatrists, psychologists, social workers and neither medication or "talk" therapy helped.

    Yes my parents have access to my computer. They rarely use it but they could walk in on me any time, so I have to be careful as to when I come to this site.

    This message board is where I first reached out five years ago, and to where I've returned to seek help.
    Hard as it seems it is only you can change the situation. You have made a start by reaching out again. I am not a psychiatrist but your inability to do things could be from a cause totally separate from the spinal condition. How is it that your parents are not worried about the fact that you stay in your room? Do they not ask you? You say you don't want to worry them but they must be worried now?

    I think you have to ask yourself What do I want? Sometime you have to put yourself first!

  13. #13
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    Quote Originally Posted by burdle View Post
    Hard as it seems it is only you can change the situation. You have made a start by reaching out again. I am not a psychiatrist but your inability to do things could be from a cause totally separate from the spinal condition. How is it that your parents are not worried about the fact that you stay in your room? Do they not ask you? You say you don't want to worry them but they must be worried now?

    I think you have to ask yourself What do I want? Sometime you have to put yourself first!
    I have to be quick and brief, as I have a small window of opportunity to reply, so I apologize.

    My parents just think it's severe chronic depression. And it is that. They just don't realize what's the underlying primary cause, despite my having told them two decades ago the conditions were making me depressed. I know that must be hard for anyone reading this to wrap their head around. As for my being withdrawn all these years, they accept it because they know when I was "living" or trying to live in the real world, everything I did ended up in crashing failure. The intensity of the emotional agony made me dysfunctional in everything I attempted. Emotional agony caused by self-consciousness, self-loathing, AND by the pain inflicted on me by others (other kids, teachers, co-workers, etc.) who verbally made fun of how I looked, or imitated how I looked and walked and sat. A lot of cruelty I endured.

    Let me just add, and I plead for patience because as I said, I can only be on this website at certain times, but today I was finally able to take the pictures of my back, from various angles. I have only time to type this reply but I hope and expect in the next few days to find a moment I can upload them to photobucket and share them with others, and describe what the problems I'm facing regarding those pictures in terms of not being a candidate for corrective surgery and regarding finding clothes I can wear so perhaps one day I can get dressed and live in the real world again like a normal human being.

  14. #14
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    I completely rewrote my initial post

    The initial post I made several weeks ago was just to re-introduce myself since it's been years that I posted here

    That done, I have completely rewritten the initial post, including a link to 5 pictures of my back, each numbered picture with a description.

    Any help would be appreciated.

  15. #15
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    I think your back looks good. On picture 2 I don't see a rib hump caused by scoliosis, and it would really show off on that picture if it was significant. Your kyphosis looks mild to me. On picture 3 it looks like you are just standing in a weird way and leaning backwards, not just raising your hand. This is just my lay opinion, I could be all wrong about this. Of course t-shirt will be tight around your back if you have a belly and that you need bigger size because of that.

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