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Thread: National Scoliosis Foundation

  1. #46
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    Jackie, yes, on my neck, by myself. (By thrusting my head sideways as if laying down on shoulder)

    I cant comment on your shoulder issues....You have had extensive revision thoracic and shoulder work done which is so rare....You’re the only one....

    I stopped Chiro since I don’t have much left to adjust. (smiley face) I have joked about this at the office, stressing my “ONE” level left, (My head) and they don’t laugh much. LOL The math has to be off for the comedy to work. If there are 24 levels to adjust and I only have one left, I should get a severe discount? Like 1/24th the price right? Many times I would go down to my Chiropractor walking in sideways like a crab, beat from a ski crash or whatever and they would always ask, “What happened?” The looks on their faces was hilarious....We tried all sorts of things through the years, and they kept me walking. They also knew I would need surgery and gave no guarantees. I would judge their efforts of pain relief. It was better than doing meds for decades.

    Traction has worked, and not worked.

    However, one device that I used years ago at my Chiropractor that helped quite a bit was the Pneumex traction treadmill. You wear a vest that wraps around your rib cage and pull up vertically while exercising on a treadmill. We would set the vertical pull at 60# and I would do 30 minute sessions. After 30 minutes on this machine, it was difficult to get any adjustments from a manual adjustment by a Chiro on a table because the machine did the adjustments while walking. Pulling apart or de-weighting while exercising with scoliosis is a good thing. This was one of the best pieces of equipment I have ever used for scoliosis therapy. It really helped with pain. I was doing it 3 days a week for a few years, I should have been on that machine every day.

    http://www.pneumex.com/Pneu-Lift.html

    One can get a handyman to rig up this setup cheaply with a system of pulley’s and weights. This company uses air, which is nice, but I don’t think its necessary.

    Scoliosis is complicated......Its going to take a lot of effort in all areas to solve the puzzle’s and its going to take a really long time.....(smug face)

    This is why its important to donate to NSF....

    Ed
    49 yr old male, now 58, the new 53...
    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

  2. #47
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    Yes the strange shoulder issue. But I can feel the lock happening and figured out something needs to adjust and then how to do it but the snap hurts and then feels better. It is maybe a few times a week and is in the fused thoracic area.
    Yes it is important to donate to the NSF. We may be saving many others from the trials of scoliosis.
    Research and education are the key.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  3. #48
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    Quote Originally Posted by titaniumed View Post
    Thanks Sharon. I wasn’t thinking poetry.....I was thinking more in general, and it applies to all scoliosis patients....

    Tonibunny was one who knew about the benefits of hot water soaking. When you have nothing, this is the easiest way to pain relief. The tub needs to be deep enough that you can float. Its also very “Zen” which is being oneself, with nothing extra, in harmony with the way things are, looking at life as it is.....Accepting reality, and de-stressing which is so important.

    Ed
    I cannot get out of the bath by myself without huge difficulty? I cannot 'get my leg over' any more. And when I have finished I have to let the water out so that if I slip I do not drown- so I get freezing cold. Baths are no longer a luxury for me- just fraught with danger!

  4. #49
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    Quote Originally Posted by jackieg412 View Post
    Yes it is important to donate to the NSF. We may be saving many others from the trials of scoliosis.
    Research and education are the key.
    I still don't know what they actually do? This is not meant to be accusatorial - but what has been achieved in the last 5 years for example? How has treatment/awareness changed. I could point to changes for children ( surgical changes) but what influence did NSF have on those changes AND what has changed for adults?

  5. #50
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    illinois
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    I may be seen soon at one of the large medical centers in the Chicago area. I should find out today. They say they do research in orthopedics and I will try to ask about the changes in the last few years. They may answer.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  6. #51
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    Sep 2011
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    Quote Originally Posted by jackieg412 View Post
    I may be seen soon at one of the large medical centers in the Chicago area. I should find out today. They say they do research in orthopedics and I will try to ask about the changes in the last few years. They may answer.

    It's more about what influence NSF has had in any changes - the thread is about the role that they play and what the money they raise goes towards ( excluding salaries) . I just never hear them mentioned. I hear about SOSORT and HARMS and BRSF and the ZORAB symposium but I don't see reference to NSF- I could be missing something?

  7. #52
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    Quote Originally Posted by burdle View Post
    I cannot get out of the bath by myself without huge difficulty? I cannot 'get my leg over' any more. And when I have finished I have to let the water out so that if I slip I do not drown- so I get freezing cold. Baths are no longer a luxury for me- just fraught with danger!
    You might check into a lift.....They do work quite well....My dad loved his baths and he had ALS. Find someplace with hot tubs or hot pool, and have someone help you in.

    Fraught with danger? No way.....That’s only a perception. (smiley face)

    Much of my inspiration comes from my father, and FDR, who battled his fears, and the rest is history.... It’s a true story about “fear and conquering disease” and the founding of the March of Dimes. Skip the WW2 part, that’s just the extra bonus part of the story....(every historian would hang me for saying this)

    I stumbled across this wiki article I didn’t know existed. It also has rare FDR photos...
    https://en.wikipedia.org/wiki/Frankl...alytic_illness

    Here is a good movie about Warm Springs. His spiritual growth was moving.......He was a giant from the past.
    http://www.imdb.com/title/tt0423510/

    Ed
    49 yr old male, now 58, the new 53...
    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

  8. #53
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    Quote Originally Posted by burdle View Post
    It's more about what influence NSF has had in any changes - the thread is about the role that they play and what the money they raise goes towards ( excluding salaries) . I just never hear them mentioned. I hear about SOSORT and HARMS and BRSF and the ZORAB symposium but I don't see reference to NSF- I could be missing something?
    That's probably because their mission does not include research, although they do participate with SOSORT and SRS, and they do donate excess funds to the SRS and possibly other organizations. Most of the organizations you mention are meant for medical professionals. The NSF serves the patient community. Their mission includes school screening, patient and family support, and raising awareness. If those issues aren't important to you, then you shouldn't feel the need to make a donation.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  9. #54
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    Quote Originally Posted by LindaRacine View Post
    That's probably because their mission does not include research, although they do participate with SOSORT and SRS, and they do donate excess funds to the SRS and possibly other organizations. Most of the organizations you mention are meant for medical professionals. The NSF serves the patient community. Their mission includes school screening, patient and family support, and raising awareness. If those issues aren't important to you, then you shouldn't feel the need to make a donation.
    Awareness is important to me- the thing is what has changed- even over the last 5 years?. In the UK nothing has changed- we have no screening- we have GPs who do not know that something can be done about scoliosis and we have orthopaedic surgeons who will not refer to scoliosis specialists. Maybe it is different in US but most of what you have mentioned is for kids- what doe NSF do for adults. The forum is made of up adults In an ideal world there would be no adults with scoliosis but this is the here and now!

  10. #55
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    Quote Originally Posted by burdle View Post
    Awareness is important to me- the thing is what has changed- even over the last 5 years?. In the UK nothing has changed- we have no screening- we have GPs who do not know that something can be done about scoliosis and we have orthopaedic surgeons who will not refer to scoliosis specialists. Maybe it is different in US but most of what you have mentioned is for kids- what doe NSF do for adults. The forum is made of up adults In an ideal world there would be no adults with scoliosis but this is the here and now!
    The forum is virtually all adults now. There used to be more parents but that has stopped. Parents are in a very dicey situation and are largely untrained in science. This has lead to many, many less than productive, less than rational exchanges which help nobody. I am glad that is over and would steer any parent who comes here to the Facebook page. The future now for kids is VBS and VBT in my opinion and there is a large and successful Facebook page for that. Talk about VBS was not encouraged here in the past so parents created another forum. I assume that place is hopping and that parents can find it.

    This forum has always be more productive for adults in my opinion although it occasionally jumps the tracks in the non-surgical section.
    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."

  11. #56
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    Quote Originally Posted by burdle View Post
    Awareness is important to me- the thing is what has changed- even over the last 5 years?. In the UK nothing has changed- we have no screening- we have GPs who do not know that something can be done about scoliosis and we have orthopaedic surgeons who will not refer to scoliosis specialists. Maybe it is different in US but most of what you have mentioned is for kids- what doe NSF do for adults. The forum is made of up adults In an ideal world there would be no adults with scoliosis but this is the here and now!
    The NSF sponsors this forum. That may be meaningless to you, but it's been very valuable for some.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  12. #57
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    Quote Originally Posted by LindaRacine View Post
    The NSF sponsors this forum. That may be meaningless to you, but it's been very valuable for some.
    You know I have been very polite about my question- I said I was not being accusatorial ; I said the I valued the forum so your comment about 'meaningless' is inappropriate. I am just asking where the money goes and asking how it has made a difference. Every charity has to be able to do explain this. Why are you being defensive- your role should not be defensive!

  13. #58
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    I never looked, but I found past financials online.....Anyone can do this.

    I think that if we want this forum and NSF to continue, it would be prudent that whoever reads here and values the foundation, the discussions, and testimonials, PLEASE make some sort of donation to ensure survival.

    From a financial standpoint, the numbers are not good, and need help.

    I am not affiliated with NSF other than being a member who posts here.

    Ed
    49 yr old male, now 58, the new 53...
    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

  14. #59
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    Quote Originally Posted by burdle View Post
    You know I have been very polite about my question- I said I was not being accusatorial ; I said the I valued the forum so your comment about 'meaningless' is inappropriate. I am just asking where the money goes and asking how it has made a difference. Every charity has to be able to do explain this. Why are you being defensive- your role should not be defensive!
    Sorry, but you keep trying to hammer away at essentially the same thing, and I can't come up with any answer that works for you. The NSF is not a research organization. They're really in the business of information and support. The "changes" they make are not necessarily tangible, but a lot of people have been greatly helped by participation in this forum. It may be that you're trying not to be accusatorial, but it's sort of coming across that way to me. It feels as if you don't believe they're doing anything for the small amount of funding they receive.

    As Ed has pointed out, you can find financial statements online, but as far as I know, none of us have any more information that you do. If you're serious about wanting to donate funds, and need more specific information, please contact Joe O'Brien at jpobrien@scoliosis.org. I don't have a lot of disposable income, but I personally send them a check occasionally. Even if they didn't do anything else, I think the forum is of great value for many, and I want to do what I can to ensure that their effort is sustainable.

    Sorry about my tone. I may have been a little frustrated.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  15. #60
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    Quote Originally Posted by LindaRacine View Post
    Sorry, but you keep trying to hammer away at essentially the same thing, and I can't come up with any answer that works for you. The NSF is not a research organization. They're really in the business of information and support. The "changes" they make are not necessarily tangible, but a lot of people have been greatly helped by participation in this forum. It may be that you're trying not to be accusatorial, but it's sort of coming across that way to me. It feels as if you don't believe they're doing anything for the small amount of funding they receive.

    As Ed has pointed out, you can find financial statements online, but as far as I know, none of us have any more information that you do. If you're serious about wanting to donate funds, and need more specific information, please contact Joe O'Brien at jpobrien@scoliosis.org. I don't have a lot of disposable income, but I personally send them a check occasionally. Even if they didn't do anything else, I think the forum is of great value for many, and I want to do what I can to ensure that their effort is sustainable.

    Sorry about my tone. I may have been a little frustrated.

    --Linda
    You know I haven't been 'hammering away'. the thread was hijacked a bit ( by myself) and took a different track for a bit. I asked the questions originally and I got a real answer from you regarding the fact that NSF was not for research - which was informative as I did not know this. I just asked again whether there was anything 'published' or put out that showed NSF successes in the areas that they do get involved. I have no problem with the donations - that is irrelevant now- there was no need for you to get frustrated or moreover for you to show it. I would indeed like to contact Jo O'Brian and may well do so - especially as I can see nothing about VBT or VBS mentioned.

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