Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Val, I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing. I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that. Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly. [ ] Re: Dr. Glazer study Hi ,I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf).Perhaps it may be in conjunction with it. For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but "outcome" is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different.Either way, I welcome the opportunity to help in any way I can!Thanks for bringing it to our attention.Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 , Is this quality of life survey for those of us pre-revision, post-revision, both, or just after having had our original Harrington Rod surgery from years ago? -- “Everyone is a house with 4 rooms – a physical, a mental, an emotional and a spiritual. Most of us tend to live in one room most of the time. However, if we don’t go into every room, every day, even if only to keep it aired, we are not a complete person” – Indian axiom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2009 Report Share Posted May 15, 2009 Hi , The qualifiers were a diagnosis of scoliosis, must be an adult now and have had surgery for it, either as a child or as an adult. Thanks, > > , > Is this quality of life survey for those of us pre-revision, > post-revision, both, or just after having had our original Harrington Rod > surgery from years ago? > > > -- > " Everyone is a house with 4 rooms – a physical, a mental, an emotional and a > spiritual. Most of us tend to live in one room most of the time. However, > if we don't go into every room, every day, even if only to keep it aired, we > are not a complete person " – Indian axiom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Hi , I would like to be able to give her details of each feedback. Are you thinking there would be more detailed questions regarding " physical results " . I know some of the questions were open ended. I specified some of my concerns for the future regarding our bodies, there. I guess, I am guessing at what you mean. Can you clarify for me? Thanks, > > , > > I just completed the survey, I found it pretty vague, and really looked at depression, rather than struggles with our scoli/ bodies. Not what I expected. Hope it helps. > > > [ ] re: Dr. Glazer study > > > > > > > , > Is this quality of life survey for those of us pre-revision, post-revision, both, or just after having had our original Harrington Rod surgery from years ago? > > > > -- > " Everyone is a house with 4 rooms – a physical, a mental, an emotional and a spiritual. Most of us tend to live in one room most of the time. However, if we don't go into every room, every day, even if only to keep it aired, we are not a complete person " – Indian axiom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Hi , I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf). Perhaps it may be in conjunction with it. For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but " outcome " is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different. Either way, I welcome the opportunity to help in any way I can! Thanks for bringing it to our attention. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi... I also answered the survey. I didn't think there were all that many questions about body image, or depression, but I'm probably a bit immune. It's been awhile since I looked at all the back surveys, but I think they used both the SRS and SF questionnaires, as well as adding some of their own. It is important to deal with these issues, as they're used to validate other questions. Dr. Berven is SUPER interested in hearing how patients feel about scoliosis outcome questionnaires. He's brought questionnaires to several scoliosis support group meetings, and asked patients to comment on them. I wonder if it would be worthwhile to set up a separate Group discussion on scoliosis outcome questions, in which he (and possibly other surgeons) would participate. Any other suggestions on how we might accomplish some interaction? Regards, > > Val, > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing. > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that. > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly. > > > [ ] Re: Dr. Glazer study > > > > > > Hi , > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf). > Perhaps it may be in conjunction with it. > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but " outcome " is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different. > > Either way, I welcome the opportunity to help in any way I can! > > Thanks for bringing it to our attention. > > Take Care, Cam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 I'm part of a 20-year followup survey study by Dr Ondra's office. Now that he's left Northwestern for DC, I have no idea if Dr Koski or someone else is taking over the study. It has several pages of questions that I have answered at each followup appt that I've had so far. My next appt (2 yr post-op) will be in July, so I assume I'll do another survery then. They deal with pain, body image, activity, depression, etc. > > > > Val, > > > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing. > > > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that. > > > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly. > > > > > > [ ] Re: Dr. Glazer study > > > > > > > > > > > > Hi , > > > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf). > > Perhaps it may be in conjunction with it. > > > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but " outcome " is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different. > > > > Either way, I welcome the opportunity to help in any way I can! > > > > Thanks for bringing it to our attention. > > > > Take Care, Cam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi , Cam and , Thanks for participating. I think that we have to give them kudo's for trying rather than the " just fix 'em and release 'em " attitude that we all fear. It is very hard to explain the " the trade off between pain and functionality " that Cam mentioned. That is why when I get asked would you do it again? or compare now to then? I end up saying it is apples and oranges...two different things before I had " flatback " was in pain and was unable to function, now I have a whole set of other issues but " not flatback " and I am able to function somewhat. Just not the same. How do you measure quality? and is quality always tied to our spines. Mine still is so my answers reflected that. Others I am sure are passed that, so their quality issues did not reflect the status of their backs. When that timeframe happens, depends on the healing cycle but we will all worry about our hardware lasting, our fusions to the sacrum, our knees and hips wearing out, etc...It is the nature of the disease. I am glad that there are some that are taking the initiative to find out how our " quality " can be improved post revision. I will post the survey again and probably again with the hopes of catching some that will participate. Thanks, C > > > > Val, > > > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing. > > > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that. > > > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly. > > > > > > [ ] Re: Dr. Glazer study > > > > > > > > > > > > Hi , > > > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf). > > Perhaps it may be in conjunction with it. > > > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but " outcome " is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different. > > > > Either way, I welcome the opportunity to help in any way I can! > > > > Thanks for bringing it to our attention. > > > > Take Care, Cam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 hi id like to fill out the survey i keep emails about from others where is it? thanks donna Donna 310-595-6462 From: vclark@...Date: Tue, 19 May 2009 15:45:31 +0000Subject: [ ] Re: Dr. Glazer study Hi , Cam and ,Thanks for participating. I think that we have to give them kudo's for trying rather than the "just fix 'em and release 'em" attitude that we all fear. It is very hard to explain the "the trade off between pain and functionality" that Cam mentioned. That is why when I get asked would you do it again? or compare now to then? I end up saying it is apples and oranges...two different things before I had "flatback" was in pain and was unable to function, now I have a whole set of other issues but "not flatback" and I am able to function somewhat. Just not the same. How do you measure quality? and is quality always tied to our spines. Mine still is so my answers reflected that. Others I am sure are passed that, so their quality issues did not reflect the status of their backs. When that timeframe happens, depends on the healing cycle but we will all worry about our hardware lasting, our fusions to the sacrum, our knees and hips wearing out, etc...It is the nature of the disease. I am glad that there are some that are taking the initiative to find out how our "quality" can be improved post revision. I will post the survey again and probably again with the hopes of catching some that will participate. Thanks, C> >> > Val,> > > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing.> > > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that.> > > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly.> > > > > > [ ] Re: Dr. Glazer study> > > > > > > > > > > > Hi ,> > > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf).> > Perhaps it may be in conjunction with it. > > > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but "outcome" is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different.> > > > Either way, I welcome the opportunity to help in any way I can!> > > > Thanks for bringing it to our attention.> > > > Take Care, Cam> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi Donna... You'll find the info here: /message/25891 Regards, > > > > > > Val, > > > > > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing. > > > > > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that. > > > > > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly. > > > > > > > > > [ ] Re: Dr. Glazer study > > > > > > > > > > > > > > > > > > Hi , > > > > > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf). > > > Perhaps it may be in conjunction with it. > > > > > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but " outcome " is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different. > > > > > > Either way, I welcome the opportunity to help in any way I can! > > > > > > Thanks for bringing it to our attention. > > > > > > Take Care, Cam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 linda what is the names of those drs in SF CALI i want to bite the bullet and go in for cousult to get my life back thank you! donna Donna 310-595-6462 From: lindaracine@...Date: Tue, 19 May 2009 17:25:19 +0000Subject: [ ] Re: Dr. Glazer study Hi Donna...You'll find the info here: /message/25891Regards,--- In , Donna <donnadavis609@...> wrote:>> > hi id like to fill out the survey i keep emails about from others where is it?> > thanks donna> > > > Donna > 310-595-6462> > > > > > > > From: vclark@...> Date: Tue, 19 May 2009 15:45:31 +0000> Subject: [ ] Re: Dr. Glazer study> > > > > > > > Hi , Cam and ,> Thanks for participating. I think that we have to give them kudo's for trying rather than the "just fix 'em and release 'em" attitude that we all fear. It is very hard to explain the "the trade off between pain and functionality" that Cam mentioned. That is why when I get asked would you do it again? or compare now to then? I end up saying it is apples and oranges...two different things before I had "flatback" was in pain and was unable to function, now I have a whole set of other issues but "not flatback" and I am able to function somewhat. Just not the same. How do you measure quality? and is quality always tied to our spines. Mine still is so my answers reflected that. Others I am sure are passed that, so their quality issues did not reflect the status of their backs. When that timeframe happens, depends on the healing cycle but we will all worry about our hardware lasting, our fusions to the sacrum, our knees and hips wearing out, etc...It is the nature of the disease. I am glad that there are some that are taking the initiative to find out how our "quality" can be improved post revision. I will post the survey again and probably again with the hopes of catching some that will participate. Thanks, C> > > > >> > > Val,> > > > > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing.> > > > > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that.> > > > > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly.> > > > > > > > > [ ] Re: Dr. Glazer study> > > > > > > > > > > > > > > > > > Hi ,> > > > > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf).> > > Perhaps it may be in conjunction with it. > > > > > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but "outcome" is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different.> > > > > > Either way, I welcome the opportunity to help in any way I can!> > > > > > Thanks for bringing it to our attention.> > > > > > Take Care, Cam> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Hi Donna... That would be Dr. Sigurd Berven and Dr. Serena Hu. They're at UCSF. I think their appointment number is 415-353-2218. As I mentioned previously, you need to be prepared to have to wait several months for an appointment. I would personally take whatever the first appointment is for either surgeon. You also need to be prepared to jump through a few hoops. You'll need to have your records submitted for approval before an appointment can be made. Lastly, you need to be prepared for a long day when you come in for your appointment. You'll almost certainly be seen by at least one resident or fellow prior to seeing the actual surgeon. Regards, > > > > > > > > Val, > > > > > > > > I concur with what Cam said. I found it mostly to be about depression, and of course if you are in pain you;ll be depressed. Also if your functionality is compromised by pain, yeah, depression. The looking good/better in part can lift your spirits, but overall, getting the pain gone, will have more to do with your feeling of wellbeing. > > > > > > > > I think the whole thing kinda missed the mark for me, would have loved to see more detailed questions that got to the reality of the scoli life, to me it was vague, and I can't see how much of real value they will get from that. > > > > > > > > Maybe they should let us, the patients work with them to put out a survey with to obtain a better picture of life for us scoli patients, the good the bad and the ugly. > > > > > > > > > > > > [ ] Re: Dr. Glazer study > > > > > > > > > > > > > > > > > > > > > > > > Hi , > > > > > > > > I just finished the survey too. I was a little worried because I think most of the questions were ones I have answered from time to time in a follow on study that I do through DrRands office. I thought this study was a part of the Scoliosis Research Societys SRS-24 survey (http://www.srs.org/professionals/outcomes/srs-24.pdf). > > > > Perhaps it may be in conjunction with it. > > > > > > > > For either of these surveys I can't help but get the feeling that the doctors equate how you look with how you feel and don't really seem to capture the essential piece for us...which is the trade off between pain and functionality. If they are looking to validate that people who are less depressed have better outcomes but " outcome " is defined by looks.....well...that doesn't work for me! I suspect if you were a primary adult scoli the equation might be different. > > > > > > > > Either way, I welcome the opportunity to help in any way I can! > > > > > > > > Thanks for bringing it to our attention. > > > > > > > > Take Care, Cam > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 , I think there might be easier ways of interacting with DrBerven than setting up a group. I think it is possible to use a variety of software to host a online " chat " . UCSF may even have their own program. Something with more immediate feedback and an easier format would be good. There is that " gottomeeting.com " I see advertised. Its too bad took away the chat feature...but I guess it is possible to just do an IM. DrBerven is also more than welcome to join our group and pose any questions to us he wants...I am sure we will all be glad to share what we think! Feel free to pass on the invite. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
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