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Thread: Seeing others with scoliosis

  1. #16
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    hi Linda
    sent you a private message...

    jess

  2. #17
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    Approaching a stranger with scoliosis


  3. #18
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    Quote Originally Posted by CHRIS WBS View Post
    Good find, Chris! There is one interesting distinction which he's naturally sensitive to - that he feared he might be seen as "trolling for business".

    It's striking that this woman who was working as a Walmart's cashier (can hardly think of a worse job for someone with Scoliosis! ) , said - after recognizing him by name:

    "I have had several customers come up to this counter and see me bent over and suggest that I go to Raleigh to see you. My business manager has also been a patient of yours, and suggested that I come to see you..."

    In her instance, numerous others HAD taken it upon themselves to speak up (and make a recommendation). I think it's a very variable decision, to be made by person and circumstance. Here, I think one important point is that the "kibbitzers" had a special recommendation to make. It's infrequent that a famous scoliosis surgeon is located in ones vicinity (especially in a relatively rural area).

    The degree to which the patient is out-going matters too. Step one is a smile. If returned, that's an important sign that there may be receptivity.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  4. #19
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    May 2008
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    Jen
    Is Wal Mart in Australia? LOL Its great to hear that you are doing well.

    Itís the large kyphosis cases that really stand out.... Sometimes scolis are difficult to spot, even with training...

    I was introduced to a scoli camping up in Oregon, and that happened through the person I was travelling with. She mentioned that I was a scoli, and was introduced. We talked for hours.

    I have met scolis simply by saying that "I am a scoli", "been battling it for years" and have never had issues with people being offended...Itís the same ice breaker technique that Amanda has mentioned...Suddenly, I'm not a stranger and we have something in common. I now try to get people to post here, which can be difficult... Some are afraid of computers. I will suggest just reading and when they are ready, they will post in time.

    I'm as open as they get, and will discuss scoliosis for as long as it takes. If a person wants to discuss the topic, more power to them, I wouldnít want them to have to go through all the learning curve I went through. It probably has something to do with having scoliosis during the "dark ages" years ago when there was nobody. I thought I was the only one. I never believed that there are so many of us.

    Surgery is a very personal decision and takes time to ponder over. Everyone is afraid of the unknown, and pain. Everyone has their loved ones telling them to "get it fixed" or "donít do it, are you crazy?" Many have these little things on their minds, and the worry that goes along with scoliosis, so it really is a matter of reading the person in the first few seconds, and if they are responsive, go for it. Some really are very inquisitive, and need someone to talk to. Its best to mention your story, and leave it at that. If they ask, you could say that I had surgery with Dr So and so, or had pain relief doing this or that.

    I find it difficult to recommend my surgeon and he did a great job. He could be the best on the planet, but all surgeons will have a certain amount of complications. Its just the nature of the business. If something were to happen, how would I feel? I will explain this to Sharon, and I know she knows, but I'm still a little worried. I know that many un-fused NSF posters appreciate referral's, but this is how I feel. Complications can happen with any surgeon....

    Funny how when your shoulder is broken, and it doesnít move, how suddenly surgery has to happen. Same goes for things like laser lithotripsy's and gall bladder removal for extreme gall bladder attacks. Major pain dictates when someone will have any surgery.

    The Dr Hey article that Chris posted is great. Nice of Dr Hey to say "just come on over", no pressure. Going to a surgeon can be very scary and this situation just shows that surgeons should just let scolis come for a visit, and absorb some information with no decision necessary. It sometimes takes several visits over a few years, like in my case.
    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #20
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    Sep 2003
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    Quote Originally Posted by titaniumed View Post

    I find it difficult to recommend my surgeon and he did a great job. He could be the best on the planet, but all surgeons will have a certain amount of complications. Its just the nature of the business. If something were to happen, how would I feel? I will explain this to Sharon, and I know she knows, but I'm still a little worried. I know that many un-fused NSF posters appreciate referral's, but this is how I feel. Complications can happen with any surgeon....
    I've always felt that way.

    And, while I'm posting to this thread, I thought I'd tell you about two times that I wish I didn't know that some people find it offensive to be approached. Last year, at the Scoliosis Research Society annual meeting, I was walking with some friends (I think there were a few doctors and a few PAs), when we came up behind a man who walked with a walker, and whose right shoulder was resting on his right hip. It was so tempting to try to take him hostage and bring him to someone like Dr. Boachie, who would have been just minutes away. The other occasion was also last year, when I saw a man walking down an outdoor staircase with his head tilted to the right, resting on his arm, and completely upside down. (Imagine the headless horseman.) I would not have even thought like something like that was possible.

    --Linda

  6. #21
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    Oct 2009
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    PA
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    Starting to think we should just wear sandwich boards saying: ASK ME ABOUT MY SCOLIOSIS.

    Then anyone interested can just approach us!
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  7. #22
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    Oct 2009
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    PA
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    798
    Shocking and tragic. Linda. Maybe, seriously, it would work if we had cards to give out - basically, saying the above. Maybe also showing before and after Xrays (for those who have them) and giving a bit of information.

    That could include contact information such as this web-site and even ones home phone if one is willing to be contacted (and reserves the cards for special cases). The recipient could then read the card at leisure after the "giver" is out of sight - then decide whether or not to call.

    And the information can say what one would have liked to say to a sufferer - with all the empathy and sensitivity to their feelings that just can't be summarized in those first thirty seconds...That might include an apology if it IS an intrusion (and focusing on our own experiences).

    As far as recommending a surgeon, I think any such recommendation, even if solicited, comes with an understood caveat that even the greatest surgeons encounter problems and that it is, in the end, a matter of trust. One involving a calculated risk. That one only passes on a name or names with that understanding because - hey, it's better than the yellow pages! It's a start.

    To be left to the mercy of advertising in making such a choice, is a fate beyond TERRIBLE.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  8. #23
    Join Date
    Mar 2010
    Posts
    2,755
    I, personally, am very hard to offend when it comes to talking about my scoliosis. I recently started wearing tank tops that actually make it visible, now that my hair is cut. The reaction from a couple of my friends was pure shock! I didn't take offense because now they know that when I say I hurt, they really know that I do. If someone noticed and said something to me, I would be all open and willing to talk about it. That's just the kind of person I am. There is a woman in my town that has an obvious major double curve. Her neck is fused from a car accident and is totally stiff. I've wanted so much to talk to her (she is also the daughter of a friend of a friend) since I've seen her various places. When I've even attempted to just say, hello, she doesn't even acknowledge me. She is definitely NOT a person I would ever bring up scoliosis to, even though I would LOVE to talk to her about it. Everyone is different, as we have seen on this board. You just don't know if you are approaching a very private person or an open person. I guess the best thing to do is to try to make small talk, non-scoli related. If they seem friendly you can mention your own problem. If they are open to discussing it, they will mention their problem to you. Just don't let them know it is obvious to you. That will save their dignity if they are a private person.

  9. #24
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    I know enough people who are really private that I would never approach someone outside of a spine clinic about their back unless, as stated earlier, I got to know that person in another way first. And, in those cases, I would only do it if I felt a real connection. Someone posted recently that she was livid when a doctor gave out her contact information to another patient without her approval. That should tell you that we don't all feel alike, and that we should err on the side of offending the least amount of people possible.

    I personally don't think that scoliosis is anything about which any of us should feel ashamed, but I respect the rights of others to have a different attitude about it.

    --Linda

  10. #25
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    Mar 2010
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    I have a friend with a VERY severe scoliosis that left her noticeably deformed even after corrective surgery. She is extremely self conscious about it. She talks to me about it because my mom told her I had it. But she is so self-conscious that she takes offense to the movie "Hunchback of Notre Dame". She thinks that is the most apalling story ever made. She doesn't even have kyphosis. She has a side bend. But she feels that the movie is very demeaning to people with scoliosis, as I'm sure many on here would agree. Yes, we have to be very sensitive to the feelings of others, that's for sure. I've never approached anyone about it, no matter how badly I wanted to.

  11. #26
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    Oct 2009
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    PA
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    Linda
    Someone posted recently that she was livid when a doctor gave out her contact information to another patient without her approval.
    Even before HIPPAA (but especially now) doing such a thing is a very serious violation of Dr - patient confidentiality. She was right to be livid. This is not just a major invasion of privacy - it's against the law

    I have often requested referrals to patients about specific issues, but only by giving my contact information so that persons known to the physicians or PT, can contact me at their convenience and at their discretion, IF THEY ARE WILLING.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  12. #27
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    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Some excellent considerations to think about here. Thanks to everyone who contributed their valuable ideas. Seems I'm not alone in wanting to offer *something* to our fellow sufferers but being hesitant to do so except in certain, rare circumstances.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  13. #28
    Join Date
    Jul 2009
    Posts
    114
    ...two cents here, as well. Though my surgery went very well and the doctor got more correction than he thought, I still have a hump above my fusion. SO sadly, some of us still have a more visible indication of our journey than others!
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  14. #29
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    Northern California
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    Quote Originally Posted by Back-out View Post
    Linda


    Even before HIPPAA (but especially now) doing such a thing is a very serious violation of Dr - patient confidentiality. She was right to be livid. This is not just a major invasion of privacy - it's against the law

    I have often requested referrals to patients about specific issues, but only by giving my contact information so that persons known to the physicians or PT, can contact me at their convenience and at their discretion, IF THEY ARE WILLING.
    The patient was not in the U.S.

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