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Thread: Not One Answer?

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    Default Not One Answer?

    Hello, I was caused to get scoliosis due to hands of a doctor doing emergency surgery for a laminectomy, I requested around 2005. I last wrote a thread "Getting Worse" that had about 114 views and ZERO replies. I have written a few times before with not much success. I worked out for decades, got spinal stenosis and ignored by the doctors. I come to a SUPPORT board and get ignored here. Even if you don't have an answer, does one person have compassion? Not one moderator even answered. How is this supportive? I was screaming for help and seeing "support" thought I would find some here.

    If anyone can explain how 114 people read my thread and said not one word, please don't bother to answer. No replies said it all. Yet, if someone knows a site with there is true support, let me know.

    As moderators, where are you? As other people going through hard times with scoliosis, where are you? I had to let this out. I have never seen a board, where even if a person couldn't help, read the message and not show some concern. I can't tell you how disappointed I am, not just for myself, but for the lack of caring.

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    Wink Re: Not One Answer?

    .
    Last edited by orchidea86; 26th July 2014 at 01:01 AM. Reason: I don't want to upset Barbara it wasn't my intention at all

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    Default Re: Not One Answer?

    Hi Barbara
    I did reply to one of your posts in the past. I too was like you - working out etc before the operation. I had the operation for scoliosis and pain and a slipped vertebra and afterwards I have been in a whole lot more pain than before and with lots of other problems. I am wondering whether it could be a reaction to the metalwork that is causing your problems as I had a reaction to my metalwork (severely) and it has now been taken out. Whilst I still have lots of allergy issues and the hospital have said some peoples back muscles never recover after something like this happens, I am still alive and the awful pain I had from the metalwork is gradually disappearing. I have since heard of lots of other ladies who have had allergy to the metalwork and have had to have it removed (NOT as uncommon as the hospital lead you to believe!). The pain sounds similar in those people I have spoken to. Clamping, gripping, burning, itching etc. Just a thought. Your consultant will say its not possible to react to titanium but thats rubbish and they know it. Besides, there is never "pure" titanium used anyway. Hope this helps. xx

  4. #4
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    Default Re: Not One Answer?

    Hi Barbara,

    I am one of the moderators on this forum and let me first apologise for the lack of response on your thread. I understand that it must be incredibly frustrating for you not getting the support you were seeking, but may I please also request a little understanding on your part.

    I was not one of the 114 views on your previous thread. There are a multitude of reasons for this: I dont spend as much time reading threads here as I used to, partly because I was a fairly straightforward case of adolescent scoliosis so though my case was a particularly severe one, I have little knowledge of complex cases and am fortunate to be experiencing relatively few problems since having surgery. Thus, scoliosis is no longer so central to my life as it once was, and though I maintain some presence on this forum, I only occasionally have the time to reply to threads. I have recently graduated university, am now working four different jobs (two of which require an hour+ commute into London) and still somehow find time for my volunteer work too.

    All us mods are volunteers, and all of us have lives outside of this forum. Your concerns do raise an important point, and I do think that collectively we should try to ensure that no thread goes unanswered. We do want people to feel supported here -that is, of course, the very reason we exist - but I hope you can understand that between us we can't always bear the full responsibility of replying to every single thread. There are just too many of them! The medical circumstances of the mods vary greatly, as do our family situations and personal lives. This means that at times (such as this) we may not have all the time we want or need to commit to the forum and have to take time to focus on ourselves and our families. Again, I really do hope you can understand that.

    I do realise that probably doesn't help you feel much better about your own situation, however, and I really wish I had some solid advice for you. Have you sought any kind of compensation for the treatment you received? Are you currently seeing any other doctor at the moment?

    I think when anyone posts on our forum it is their best hope that someone who can shed some light on their experience will be around to offer some advice. I am sorry that that hasn't happened yet and that you haven't felt supported here. I do really hope that you'll stick around to give us another chance. Another idea might be to search through our thread history to see if anyone in similar circumstances to yours has posted before. They might not still be around the forums now, but there's always a chance that you will find something helpful in there.

    Wishing you all the best, and

    Maddy
    Diagnosed with adolescent idiopathic scoliosis on the 10th April 2007. Seen at the Child Development Centre at the Medway Maritime Hospital on 18th June then referred to Mr Noordeen at the RNOH Stanmore. Seen by consultant on the 13th July x-rays revealed 77o thoracolumbar curve and severe rotation. Surgery planned in 6 months had surgery on 26th November 2007. Admitted for pre-op on 23rd stayed in over the weekend. Curve then 90o, suffering from pain and reduced lung function. Moved from HDU to ward after 24hrs, then into isolation for suspected infection after 3 days. Symptoms turned out to be a bad reaction to antibiotics.

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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: Not One Answer?

    Dear Barbara,

    As an admin here, I am so sorry we have failed you. We get a lot of posts here and although we try to do our best, it is difficult to reply to everyone. I'm terribly, terribly sorry that your posts dropped down the forum and got missed without any replies. As Maddy has said, we are a volunteer support site that grew out of a small group of friends several years ago, and the admins/staff themselves are nearly all people who are dealing with longterm severe health issues of their own. I myself have been having treatment for Stage 4 cancer for the past four years and am currently into my fifth chemo regime, so I get very tired and am often not as on-the-ball as I would like to be. I have no experience of what you had experienced and I live in the UK, so I was hoping that someone who could relate to your situation would chime in with practical support for you; unfortunately your post slipped by and I failed to reply, but i genuinely do feel sad for you for all that you have been through. all I can offer is moral support and sympathy that you are having such a horrible time. I did reply to an earlier thread of yours, when you first posted. About half of our membership is based in the UK and Ireland, with the rest coming from other countries around the world, so with differing healthcare systems it may well be that others have felt they can't offer practical advice either, and so don't post.

    Again, I am so sorry. Please keep posting, you are very welcome here and we will do our best to help you as much as I am able. Thank you for speaking out and letting us know that we could do better.

    With love,
    Toni xx
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Not One Answer?

    Hi Barbara,

    Im not a mod here. But im sorry nothing has been said to help. I myself am in the middle of recovering from the op, and so sometimes dont feel up to replying. As for your post i read it at night, with the intension of replying the following day. But that slipped my mind and so subsiquntly failed to reply, but saying that, it wouldnt of been anyting of use, as i know nothing of what you were seeking help for. I can genuanly feel for you with what you have been going through the past years. I really hope that you can get the help you need whenever you post next.

    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  7. #7
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    Default Re: Not One Answer?

    Quote Originally Posted by orchidea86 View Post
    Hi
    I'm not a moderator!
    Well I've checked your threads and you have been answered maybe not by many people, but still. So it's not fair to say that you have been completely ignored.

    I saw that you last thread don't have any answers.
    Well I think when it's coming to back pain it's a very difficult to give a straight solution, because I feel that there isn't any like that.
    I can tell from my own experience that exercise do help. Maybe you will have to wait a long time for a results but to get a strong muscles around spine is essential for us twisted people.
    I'm much younger than you are I guess at yours soon age but unfortunately I went through the hell in my life, Im lucky that I'm alive to be honest, and every day I'm fighting with my self with my spine, with the way I look, and walk because of the deformation.

    It's not easy but to sit and just crying over your self it's a worst thing to do. I know because I've been there. Maybe it's time for you to get some advice from physiotherapists, start going to gym, get active
    I can imagine that looking after your husband isn't making things any easier and I know what I'm talking about, because from 7 years I'm working as a care assistant. From 3 as a living in career for a 93 years old lady.
    But still you need to get yourself out from those thoughts of pain and how your life is now changed. You need to distract yourself as much as possible, maybe learn some relaxation techniques.
    Get involved in local community I don't know do anything.

    I'm sorry that you haven't been given as many answers as you were hoping for, but people sometimes may though that they don't know what to answer.
    Or they may not have time. Now been summer most of us are busy with kids, and other stuff.
    But I can tell you that this forum is massive. You can read some many stories and learn advice from people experience.
    I was given no answers, not "as many as I was hoping for" and now you bring up exercise. I asked that on another thread, which also wasn't answered. What exercises would have been best, would be good to know. But how do you conclude I am doing nothing and crying over it? What makes you think I am not busy? How do you know my age also? Your attitude makes you sound older. Funny how you came not to support me but find fault. I've been to boards and if they had no answer and saw someone get no reply. at least offer compassion. Your responses were worse than getting none. They were mean and perhaps you are projecting. Telling me to get involved in something. Sorry to have heard a word from you. You spent more time telling me off, talking about yourself (BTW, an English course would be helpful).

    I have never had such a harsh and rude answer before. It was very fair to say I received no replies. You should just stay off "support" boards, period.

  8. #8
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    Default Re: Not One Answer?

    Quote Originally Posted by madmclw View Post
    Hi Barbara,

    I am one of the moderators on this forum and let me first apologise for the lack of response on your thread. I understand that it must be incredibly frustrating for you not getting the support you were seeking, but may I please also request a little understanding on your part.

    I was not one of the 114 views on your previous thread. There are a multitude of reasons for this: I dont spend as much time reading threads here as I used to, partly because I was a fairly straightforward case of adolescent scoliosis so though my case was a particularly severe one, I have little knowledge of complex cases and am fortunate to be experiencing relatively few problems since having surgery. Thus, scoliosis is no longer so central to my life as it once was, and though I maintain some presence on this forum, I only occasionally have the time to reply to threads. I have recently graduated university, am now working four different jobs (two of which require an hour+ commute into London) and still somehow find time for my volunteer work too.

    All us mods are volunteers, and all of us have lives outside of this forum. Your concerns do raise an important point, and I do think that collectively we should try to ensure that no thread goes unanswered. We do want people to feel supported here -that is, of course, the very reason we exist - but I hope you can understand that between us we can't always bear the full responsibility of replying to every single thread. There are just too many of them! The medical circumstances of the mods vary greatly, as do our family situations and personal lives. This means that at times (such as this) we may not have all the time we want or need to commit to the forum and have to take time to focus on ourselves and our families. Again, I really do hope you can understand that.

    I do realise that probably doesn't help you feel much better about your own situation, however, and I really wish I had some solid advice for you. Have you sought any kind of compensation for the treatment you received? Are you currently seeing any other doctor at the moment?

    I think when anyone posts on our forum it is their best hope that someone who can shed some light on their experience will be around to offer some advice. I am sorry that that hasn't happened yet and that you haven't felt supported here. I do really hope that you'll stick around to give us another chance. Another idea might be to search through our thread history to see if anyone in similar circumstances to yours has posted before. They might not still be around the forums now, but there's always a chance that you will find something helpful in there.

    Wishing you all the best, and

    Maddy
    Maddy, Just a quick thank you for being kind, when that is often what one wants from a support board. I appreciate your apology and can understand you not answering. I just found it so hard to believe that so many people read my message and said nothing. That one person assuming that I spent my day crying, doing nothing added insult to the injury. I can't seem to find a good answer even from my surgeon. I am not happy but not crying all day or presumed old by the person who would have done better not to answer me. Stay well Maddy.

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    Default Re: Not One Answer?

    Thank you to the moderators and the kind people who had something to say. Only one person chose to find faults with me. One comes to a support board for support not fault finding and assuming I am crying and doing nothing all day. This person (who's English was very hard to follow) even suggested me of being old.

    I was answering individually but saw that wasn't a great idea. So thanks to all but the one fly in the ointment, I think you know who you are.

    Barbara

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    Default Re: Not One Answer?

    I'm so sorry the last intention of mine was to upset you.

    The only reason why I've written so much was to explain in my own way that things can be very bad but they might change for better. Exercise might not always be an answer.

    I didn't mean in any way to upset you. That wasn't my intention
    I do apologise

  11. #11
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    Default Re: Not One Answer?

    I appreciate the apology. Too many assumptions about me were made but let's just forget it. I came for support and ideas as to why my back feels worse. My surgeon hasn't helped and have tried to get some ideas here. I thought someone or more might have answers.

    Apology accepted and appreciated. Take care.

  12. #12
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    Default Re: Not One Answer?

    Barbara,

    I understand your upset and frustration, and I know that some of the advice offered above may not have been exactly what you wanted or needed to hear at this time, but please can we refrain from personal criticisms of individuals? I don't believe orchidea's response was intended in a 'rude' or 'harsh' fashion at all - the language barrier may have meant that in this instance some of the meaning was lost in translation and with the emotion behind this thread, or perhaps members were not aware of your scoliosis story in replying to this thread and were instead trying to offer more general advice. Some good points have been made about dealing with constant pain and the anguish our conditions can cause - sometimes trying to keep busy and distracting ourselves the only ways we can get by. Criticising the English of someone for whom it is not their first language is unkind, however upset you might be about their comments, and as you so rightly pointed out, this being a support forum we would expect all members to be as supportive to one another as possible, even if we disagree with their opinions or their advice.

    I don't want to take sides on this one so I am not going to suggest that you were wrong to be upset, before this thread was posted or as a result of anything that was said within it. Wrongs have been done, but please going forward lets all endeavour to be kind, supportive, and if we are frustrated or upset at the very least civil - EVERYONE has a right to be a member of this forum and to feel safe and supported while they are here, and we all have a duty to contribute to creating that atmosphere.

    I think it would be best if we drew a line under this thread and all started anew
    Diagnosed with adolescent idiopathic scoliosis on the 10th April 2007. Seen at the Child Development Centre at the Medway Maritime Hospital on 18th June then referred to Mr Noordeen at the RNOH Stanmore. Seen by consultant on the 13th July x-rays revealed 77o thoracolumbar curve and severe rotation. Surgery planned in 6 months had surgery on 26th November 2007. Admitted for pre-op on 23rd stayed in over the weekend. Curve then 90o, suffering from pain and reduced lung function. Moved from HDU to ward after 24hrs, then into isolation for suspected infection after 3 days. Symptoms turned out to be a bad reaction to antibiotics.

  13. #13
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: Not One Answer?

    As an international site, the potential for there to be a language barrier is something we should all be aware of. Orchidea86 is from Poland - I wish I could speak Polish as well as she speaks English!

    I'll lock this thread now, so we can all move forward. Thanks for your apologies and understanding, everyone
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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