Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 Carol, showing them your x-rays and an article or two on flatback by a scoliosis surgeon should do the trick. This is what I showed my internist, and she was very understanding. I'm not in a lot of pain; my worst area is my hands/arms, which may actually be from overuse as a pianist (no spine doc seems willing to link it to my spine condition). So she has me on an antidepressant which acts as a muscle relaxant, and an anti-inflammatory as needed. So I can't speak of " serious " pain medication, though I think I could get it if I needed it. Sharon in Southern New Hampshire Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc. mission Is this group just for people who have had, or are seriously planning the revision surgery ? Trying to find any posts regarding the Durgesic patchs. I am having only partial pain management from it. Please note my recent address change from robinet1947@... to caroljhoffman@.... Very isolated where I live. And no one wants to ask about my bent forward posture, it is just like people are too afraid to ask. My vertabrea just above my fusion down to include the sacrum and the pelvis is giving me great pain. How do we go to a doctor and try to convey to them that we are genuinely in PAIN, and not " drug seeking " ?? cjh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Dear Carol: I am so sorry to hear that you are having trouble getting the pain relief you need. I have found this to be one of the biggest aggravations that I face. However, I finally found a Pain Management Specialist that is wonderful and I think from the other people I have talked to that this is about the only way to go if you need narcotics to help you get the relief you need and deserve. Are you close to a large city that may have a Pain Mgmt Dr? If so, I would definetly try that and take with you all of your records, x-rays, etc.. Good luck and I would love to hear from you and how you are doing!! Write if you are feeling up to it. Be safe and God Bless, Debbie --- In , " caroljhoffman " <caroljhoffman@y...> wrote: > Is this group just for people who have had, or are seriously planning > the revision surgery ? Trying to find any posts regarding the > Durgesic patchs. I am having only partial pain management from it. > Please note my recent address change from robinet1947@y... > to caroljhoffman@y... Very isolated where I live. And no > one wants to ask about my bent forward posture, it is just like > people are too afraid to ask. My vertabrea just above my fusion down > to include the sacrum and the pelvis is giving me great pain. How do > we go to a doctor and try to convey to them that we are genuinely in > PAIN , and not " drug seeking " ?? cjh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Carol, I've just returned from a very enlightening few days in Washington, D.C. on this very subject...Pain Management and where to find it. It was an exciting few days to say the least and I'm pleased to report that OUR VOICES ARE BEING HEARD ON CAPITOL HILL FOLKS!!! At a press conference on Monday September 8, a new virtual text program on Pain Management was introduced to the media. It will be available in 2004 to medical students as an on-line text, free of charge. After speaking with many people involved in the care and treatment of chronic pain patients, I can tell you for a fact that it's NOT widely known in the medical community that chronic pain is, by far, one of the most under-treated if not un-treated illnesses in this country. Not enough docs know how to treat if, and certainly too many docs are afraid to treat it. One of the speakers at the press conference was former Health and Human Services Secretary Dr. Louis Sullivan who stated that " Untreated pain, tragically, is an epidemic in the United States " . Dr. Satcher, Former Surgeon General of the United States told the group that " nearly 50 million Americans---almost one quarter of our adult population---suffer from persistent pain. " " The social costs of pain also can be staggering, reaching one-hundred billion dollars annually from, among other causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen, President of the Association of Medical Colleges stated, " If we are to treat a future generation of pain patients, we must first educate the next generation of doctors who will care for them. " And then of course, there was little ol' me...who spoke at the very beginning of the press conference to supposedly " put a face on chronic pain " ...at least that's how I was introduced!! Folks, let me tell you, I've never been so scared yet so unbelievably motivated in my life!! After speaking with several members on the Board of the American Pain Foundation after a rehearsal the night before the news conference, I realized that it's people like us that they really want and need to hear from!! Many of them had never even heard of Flatback Syndrome or HARMS, so besides telling them what it's like to feel so frustrated looking for someone to treat my pain after going through so many difficult surgeries, I also had the unique opportunity to put FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The story was picked up by the AP and Reuters news wires and I also gave one-on- one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In every interview I talked about Flatback and it's " first cousin " , PAIN!! I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of Oxycontin...it having been the subject of plenty of BAD press in recent years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin. I have been on Oxycontin CR for 18 months and they have been the best 18 months I've had in a very long time. One thing I repeated over and over (and over!!) again, in the press conference and in every interview I gave, was that " a person's quality of life is directly proportionate to their functionality and if you can't function, you have NO quality of life! " Too many medications I was prescribed over a 6 year period of time, (pre and post revision surgery) made it impossible for me to function at all; I was either too gorked to see and talk or too nauseated to leave the house. Oxycontin CR was the first med I was EVER prescribed that did none of those things to me. But even though it was Perdue who picked up the tab for me to stay in D.C. for 3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on a piece of paper in front of me and I really respect them for that. The doc I FINALLY found to do my Pain Management is, of all things, a Primary Care physician who has taken continuing education courses on Pain Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that basically stated I would not attempt to get drugs for pain from any other doctor; that I would only take the amount prescribed; that I would honestly report any side effects immediately; and that if I missed/canceled more than 2 appointments in a one year period of time that I would be immediately dropped from the pain program. After all the crap I had tolerated from other doctors, even so-called Pain Management doctors,...everything from being told that the pain was in my head and I needed a psychiatrist (which I saw to keep him happy! The psychiatrist took one look at my post-revision x-rays and said " I think it's your doctor who needs to come see me! " )to being told that my pain was due to menopause!! I'm guessing that there are many of you out there reading this who are saying to yourselves, " Oh my God, that's exactly what I've been told, too!! " Well take heart folks...there really are doctors who don't think we're nuts or that we're all menopausal...I'm sure that's a big relief to all you guys out there!!! The problem is finding one of them and getting good, reliable, treatment (which may or may not include opoids). Hopefully, the days of being unable to find treatment for chronic pain are quickly coming to an end (I know...my mouth to God's ears!!). Just as it's been so difficult for many of us to find someone competent enough to treat our Flatback, be it surgical or non-surgical, it's at least that difficult to find someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been most quoted on FOX News, CNN, USA Today and several other news sources, are these... " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. " By the way, the med student program is called TOP MED OR " TOPICS ON PAIN MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of patients of all ages suffering from different types of pain. It will be made available free of charge to medical students across the country in 2004. Ideally, Pain Management will one day be a required course for all medical students, interns and residents. That day is fast approaching and I've had the privilege of being included in on this ground-breaking work. I took copies of many of the e-mails regarding pain and pain management or lack thereof, included on this web site, (taking GREAT care to make sure that no one's e- mail address and/or name appeared anywhere on the printed copy) and passed them on to several doctors, medical school professors, pharmaceutical manufacturers reps and also to several senators and congress-people that were present at the press conference. Some of your personal stories of pain and surgery really raised some eyebrows and got more than a few conversations going!!! As one of the Perdue folks said to me as I was getting in a car to come back home... " I don't know how we'll ever be able to thank you for all you've done for us the past few days. You've put a face on the issue of chronic pain here on Capitol Hill; and you've even managed to get some of these people to quit talking and thinking only about themselves and start talking about you and all the people like you who suffer in silence every day. They won't soon forget the face and voice you've put on chronic pain!! God bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the first time. " SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS SUBJECT!! I won't give up our fight...I've only just begun to get people to listen to me. All the best, Beth P.S. Anyone looking for a physician and/or Pain Management program in their area should check out the following web sites: The American Board of Pain Medicine www.abpm.org The American Pain Foundation www.painfoundation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Beth, You rock! Wish I;d have seen the press conference! Congratulations! denise Banner, RN, CCM, RN-WCCM Nurse Case Manager First Rehabilitation Resources, Inc. 336-299-9995 (Phone) 336-299-3440 (Fax) Re: mission > Carol, > I've just returned from a very enlightening few days in Washington, D.C. on > this very subject...Pain Management and where to find it. It was an exciting > few days to say the least and I'm pleased to report that OUR VOICES ARE BEING > HEARD ON CAPITOL HILL FOLKS!!! > At a press conference on Monday September 8, a new virtual text program on > Pain Management was introduced to the media. It will be available in 2004 to > medical students as an on-line text, free of charge. After speaking with many > people involved in the care and treatment of chronic pain patients, I can tell > you for a fact that it's NOT widely known in the medical community that > chronic pain is, by far, one of the most under-treated if not un-treated > illnesses in this country. Not enough docs know how to treat if, and certainly > too many docs are afraid to treat it. One of the speakers at the press > conference was former Health and Human Services Secretary Dr. Louis Sullivan > who stated that " Untreated pain, tragically, is an epidemic in the United > States " . Dr. Satcher, Former Surgeon General of the United States told > the group that " nearly 50 million Americans---almost one quarter of our adult > population---suffer from persistent pain. " " The social costs of pain also can > be staggering, reaching one-hundred billion dollars annually from, among other > causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen, > President of the Association of Medical Colleges stated, " If we are to treat a > future generation of pain patients, we must first educate the next generation > of doctors who will care for them. " > And then of course, there was little ol' me...who spoke at the very > beginning of the press conference to supposedly " put a face on chronic > pain " ...at least that's how I was introduced!! Folks, let me tell you, I've > never been so scared yet so unbelievably motivated in my life!! After speaking > with several members on the Board of the American Pain Foundation after a > rehearsal the night before the news conference, I realized that it's people > like us that they really want and need to hear from!! Many of them had never > even heard of Flatback Syndrome or HARMS, so besides telling them what it's > like to feel so frustrated looking for someone to treat my pain after going > through so many difficult surgeries, I also had the unique opportunity to put > FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The > story was picked up by the AP and Reuters news wires and I also gave one-on- > one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In > every interview I talked about Flatback and it's " first cousin " , PAIN!! > I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of > Oxycontin...it having been the subject of plenty of BAD press in recent > years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin. > I have been on Oxycontin CR for 18 months and they have been the best 18 > months I've had in a very long time. One thing I repeated over and over (and > over!!) again, in the press conference and in every interview I gave, was > that " a person's quality of life is directly proportionate to their > functionality and if you can't function, you have NO quality of life! " Too > many medications I was prescribed over a 6 year period of time, (pre and post > revision surgery) made it impossible for me to function at all; I was either > too gorked to see and talk or too nauseated to leave the house. Oxycontin CR > was the first med I was EVER prescribed that did none of those things to me. > But even though it was Perdue who picked up the tab for me to stay in D.C. for > 3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on > a piece of paper in front of me and I really respect them for that. > The doc I FINALLY found to do my Pain Management is, of all things, a > Primary Care physician who has taken continuing education courses on Pain > Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin > and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that > basically stated I would not attempt to get drugs for pain from any other > doctor; that I would only take the amount prescribed; that I would honestly > report any side effects immediately; and that if I missed/canceled more than 2 > appointments in a one year period of time that I would be immediately dropped > from the pain program. After all the crap I had tolerated from other doctors, > even so-called Pain Management doctors,...everything from being told that the > pain was in my head and I needed a psychiatrist (which I saw to keep him > happy! The psychiatrist took one look at my post-revision x-rays and said " I > think it's your doctor who needs to come see me! " )to being told that my pain > was due to menopause!! I'm guessing that there are many of you out there > reading this who are saying to yourselves, " Oh my God, that's exactly what > I've been told, too!! " Well take heart folks...there really are doctors who > don't think we're nuts or that we're all menopausal...I'm sure that's a big > relief to all you guys out there!!! The problem is finding one of them and > getting good, reliable, treatment (which may or may not include opoids). > Hopefully, the days of being unable to find treatment for chronic pain are > quickly coming to an end (I know...my mouth to God's ears!!). Just as it's > been so difficult for many of us to find someone competent enough to treat our > Flatback, be it surgical or non-surgical, it's at least that difficult to find > someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS > PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been > most quoted on FOX News, CNN, USA Today and several other news sources, are > these... > " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE > DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. " > > By the way, the med student program is called TOP MED OR " TOPICS ON PAIN > MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of > patients of all ages suffering from different types of pain. It will be made > available free of charge to medical students across the country in 2004. > Ideally, Pain Management will one day be a required course for all medical > students, interns and residents. That day is fast approaching and I've had > the privilege of being included in on this ground-breaking work. I took copies > of many of the e-mails regarding pain and pain management or lack thereof, > included on this web site, (taking GREAT care to make sure that no one's e- > mail address and/or name appeared anywhere on the printed copy) and passed > them on to several doctors, medical school professors, pharmaceutical > manufacturers reps and also to several senators and congress-people that were > present at the press conference. Some of your personal stories of pain and > surgery really raised some eyebrows and got more than a few conversations > going!!! As one of the Perdue folks said to me as I was getting in a car to > come back home... " I don't know how we'll ever be able to thank you for all > you've done for us the past few days. You've put a face on the issue of > chronic pain here on Capitol Hill; and you've even managed to get some of > these people to quit talking and thinking only about themselves and start > talking about you and all the people like you who suffer in silence every day. > They won't soon forget the face and voice you've put on chronic pain!! God > bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE > HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE > PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the > first time. " > SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS > SUBJECT!! I won't give up our fight...I've only just begun to get people to > listen to me. > > All the best, > Beth > > P.S. Anyone looking for a physician and/or Pain Management program in their > area should check out the following web sites: > > The American Board of Pain Medicine www.abpm.org > The American Pain Foundation www.painfoundation.org > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Wow, Beth, As tears fall into my coffee while reading this, I thank you from the bottom of my heart! Please let us know if you hear any of those interviews show up on camera!!!! Thanks for the links also! M. in Texas > Carol, > I've just returned from a very enlightening few days in Washington, D.C. on > this very subject...Pain Management and where to find it. It was an exciting > few days to say the least and I'm pleased to report that OUR VOICES ARE BEING > HEARD ON CAPITOL HILL FOLKS!!! > At a press conference on Monday September 8, a new virtual text program on > Pain Management was introduced to the media. It will be available in 2004 to > medical students as an on-line text, free of charge. After speaking with many > people involved in the care and treatment of chronic pain patients, I can tell > you for a fact that it's NOT widely known in the medical community that > chronic pain is, by far, one of the most under-treated if not un- treated > illnesses in this country. Not enough docs know how to treat if, and certainly > too many docs are afraid to treat it. One of the speakers at the press > conference was former Health and Human Services Secretary Dr. Louis Sullivan > who stated that " Untreated pain, tragically, is an epidemic in the United > States " . Dr. Satcher, Former Surgeon General of the United States told > the group that " nearly 50 million Americans---almost one quarter of our adult > population---suffer from persistent pain. " " The social costs of pain also can > be staggering, reaching one-hundred billion dollars annually from, among other > causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen, > President of the Association of Medical Colleges stated, " If we are to treat a > future generation of pain patients, we must first educate the next generation > of doctors who will care for them. " > And then of course, there was little ol' me...who spoke at the very > beginning of the press conference to supposedly " put a face on chronic > pain " ...at least that's how I was introduced!! Folks, let me tell you, I've > never been so scared yet so unbelievably motivated in my life!! After speaking > with several members on the Board of the American Pain Foundation after a > rehearsal the night before the news conference, I realized that it's people > like us that they really want and need to hear from!! Many of them had never > even heard of Flatback Syndrome or HARMS, so besides telling them what it's > like to feel so frustrated looking for someone to treat my pain after going > through so many difficult surgeries, I also had the unique opportunity to put > FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The > story was picked up by the AP and Reuters news wires and I also gave one-on- > one interviews to CNN, MSNBC, FOXNews, and several local (D.C.) reporters. In > every interview I talked about Flatback and it's " first cousin " , PAIN!! > I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of > Oxycontin...it having been the subject of plenty of BAD press in recent > years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin. > I have been on Oxycontin CR for 18 months and they have been the best 18 > months I've had in a very long time. One thing I repeated over and over (and > over!!) again, in the press conference and in every interview I gave, was > that " a person's quality of life is directly proportionate to their > functionality and if you can't function, you have NO quality of life! " Too > many medications I was prescribed over a 6 year period of time, (pre and post > revision surgery) made it impossible for me to function at all; I was either > too gorked to see and talk or too nauseated to leave the house. Oxycontin CR > was the first med I was EVER prescribed that did none of those things to me. > But even though it was Perdue who picked up the tab for me to stay in D.C. for > 3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on > a piece of paper in front of me and I really respect them for that. > The doc I FINALLY found to do my Pain Management is, of all things, a > Primary Care physician who has taken continuing education courses on Pain > Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin > and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that > basically stated I would not attempt to get drugs for pain from any other > doctor; that I would only take the amount prescribed; that I would honestly > report any side effects immediately; and that if I missed/canceled more than 2 > appointments in a one year period of time that I would be immediately dropped > from the pain program. After all the crap I had tolerated from other doctors, > even so-called Pain Management doctors,...everything from being told that the > pain was in my head and I needed a psychiatrist (which I saw to keep him > happy! The psychiatrist took one look at my post-revision x-rays and said " I > think it's your doctor who needs to come see me! " )to being told that my pain > was due to menopause!! I'm guessing that there are many of you out there > reading this who are saying to yourselves, " Oh my God, that's exactly what > I've been told, too!! " Well take heart folks...there really are doctors who > don't think we're nuts or that we're all menopausal...I'm sure that's a big > relief to all you guys out there!!! The problem is finding one of them and > getting good, reliable, treatment (which may or may not include opoids). > Hopefully, the days of being unable to find treatment for chronic pain are > quickly coming to an end (I know...my mouth to God's ears!!). Just as it's > been so difficult for many of us to find someone competent enough to treat our > Flatback, be it surgical or non-surgical, it's at least that difficult to find > someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS > PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been > most quoted on FOX News, CNN, USA Today and several other news sources, are > these... > " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE > DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. " > > By the way, the med student program is called TOP MED OR " TOPICS ON PAIN > MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of > patients of all ages suffering from different types of pain. It will be made > available free of charge to medical students across the country in 2004. > Ideally, Pain Management will one day be a required course for all medical > students, interns and residents. That day is fast approaching and I've had > the privilege of being included in on this ground-breaking work. I took copies > of many of the e-mails regarding pain and pain management or lack thereof, > included on this web site, (taking GREAT care to make sure that no one's e- > mail address and/or name appeared anywhere on the printed copy) and passed > them on to several doctors, medical school professors, pharmaceutical > manufacturers reps and also to several senators and congress- people that were > present at the press conference. Some of your personal stories of pain and > surgery really raised some eyebrows and got more than a few conversations > going!!! As one of the Perdue folks said to me as I was getting in a car to > come back home... " I don't know how we'll ever be able to thank you for all > you've done for us the past few days. You've put a face on the issue of > chronic pain here on Capitol Hill; and you've even managed to get some of > these people to quit talking and thinking only about themselves and start > talking about you and all the people like you who suffer in silence every day. > They won't soon forget the face and voice you've put on chronic pain!! God > bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE > HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE > PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the > first time. " > SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS > SUBJECT!! I won't give up our fight...I've only just begun to get people to > listen to me. > > All the best, > Beth > > P.S. Anyone looking for a physician and/or Pain Management program in their > area should check out the following web sites: > > The American Board of Pain Medicine www.abpm.org > The American Pain Foundation www.painfoundation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 WOW, Beth! What an experience. Good job, and thank you. Do you know if any of the coverage will be repeated on cable TV? Re: mission Carol, I've just returned from a very enlightening few days in Washington, D.C. on this very subject...Pain Management and where to find it. It was an exciting few days to say the least and I'm pleased to report that OUR VOICES ARE BEING HEARD ON CAPITOL HILL FOLKS!!! At a press conference on Monday September 8, a new virtual text program on Pain Management was introduced to the media. It will be available in 2004 to medical students as an on-line text, free of charge. After speaking with many people involved in the care and treatment of chronic pain patients, I can tell you for a fact that it's NOT widely known in the medical community that chronic pain is, by far, one of the most under-treated if not un-treated illnesses in this country. Not enough docs know how to treat if, and certainly too many docs are afraid to treat it. One of the speakers at the press conference was former Health and Human Services Secretary Dr. Louis Sullivan who stated that " Untreated pain, tragically, is an epidemic in the United States " . Dr. Satcher, Former Surgeon General of the United States told the group that " nearly 50 million Americans---almost one quarter of our adult population---suffer from persistent pain. " " The social costs of pain also can be staggering, reaching one-hundred billion dollars annually from, among other causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen, President of the Association of Medical Colleges stated, " If we are to treat a future generation of pain patients, we must first educate the next generation of doctors who will care for them. " And then of course, there was little ol' me...who spoke at the very beginning of the press conference to supposedly " put a face on chronic pain " ...at least that's how I was introduced!! Folks, let me tell you, I've never been so scared yet so unbelievably motivated in my life!! After speaking with several members on the Board of the American Pain Foundation after a rehearsal the night before the news conference, I realized that it's people like us that they really want and need to hear from!! Many of them had never even heard of Flatback Syndrome or HARMS, so besides telling them what it's like to feel so frustrated looking for someone to treat my pain after going through so many difficult surgeries, I also had the unique opportunity to put FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The story was picked up by the AP and Reuters news wires and I also gave one-on- one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In every interview I talked about Flatback and it's " first cousin " , PAIN!! I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of Oxycontin...it having been the subject of plenty of BAD press in recent years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin. I have been on Oxycontin CR for 18 months and they have been the best 18 months I've had in a very long time. One thing I repeated over and over (and over!!) again, in the press conference and in every interview I gave, was that " a person's quality of life is directly proportionate to their functionality and if you can't function, you have NO quality of life! " Too many medications I was prescribed over a 6 year period of time, (pre and post revision surgery) made it impossible for me to function at all; I was either too gorked to see and talk or too nauseated to leave the house. Oxycontin CR was the first med I was EVER prescribed that did none of those things to me. But even though it was Perdue who picked up the tab for me to stay in D.C. for 3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on a piece of paper in front of me and I really respect them for that. The doc I FINALLY found to do my Pain Management is, of all things, a Primary Care physician who has taken continuing education courses on Pain Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that basically stated I would not attempt to get drugs for pain from any other doctor; that I would only take the amount prescribed; that I would honestly report any side effects immediately; and that if I missed/canceled more than 2 appointments in a one year period of time that I would be immediately dropped from the pain program. After all the crap I had tolerated from other doctors, even so-called Pain Management doctors,...everything from being told that the pain was in my head and I needed a psychiatrist (which I saw to keep him happy! The psychiatrist took one look at my post-revision x-rays and said " I think it's your doctor who needs to come see me! " )to being told that my pain was due to menopause!! I'm guessing that there are many of you out there reading this who are saying to yourselves, " Oh my God, that's exactly what I've been told, too!! " Well take heart folks...there really are doctors who don't think we're nuts or that we're all menopausal...I'm sure that's a big relief to all you guys out there!!! The problem is finding one of them and getting good, reliable, treatment (which may or may not include opoids). Hopefully, the days of being unable to find treatment for chronic pain are quickly coming to an end (I know...my mouth to God's ears!!). Just as it's been so difficult for many of us to find someone competent enough to treat our Flatback, be it surgical or non-surgical, it's at least that difficult to find someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been most quoted on FOX News, CNN, USA Today and several other news sources, are these... " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. " By the way, the med student program is called TOP MED OR " TOPICS ON PAIN MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of patients of all ages suffering from different types of pain. It will be made available free of charge to medical students across the country in 2004. Ideally, Pain Management will one day be a required course for all medical students, interns and residents. That day is fast approaching and I've had the privilege of being included in on this ground-breaking work. I took copies of many of the e-mails regarding pain and pain management or lack thereof, included on this web site, (taking GREAT care to make sure that no one's e- mail address and/or name appeared anywhere on the printed copy) and passed them on to several doctors, medical school professors, pharmaceutical manufacturers reps and also to several senators and congress-people that were present at the press conference. Some of your personal stories of pain and surgery really raised some eyebrows and got more than a few conversations going!!! As one of the Perdue folks said to me as I was getting in a car to come back home... " I don't know how we'll ever be able to thank you for all you've done for us the past few days. You've put a face on the issue of chronic pain here on Capitol Hill; and you've even managed to get some of these people to quit talking and thinking only about themselves and start talking about you and all the people like you who suffer in silence every day. They won't soon forget the face and voice you've put on chronic pain!! God bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the first time. " SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS SUBJECT!! I won't give up our fight...I've only just begun to get people to listen to me. All the best, Beth P.S. Anyone looking for a physician and/or Pain Management program in their area should check out the following web sites: The American Board of Pain Medicine www.abpm.org The American Pain Foundation www.painfoundation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 You done good, Beth. Thanks for giving us such a thorough and detailed account of the meeting. Re: mission Carol, I've just returned from a very enlightening few days in Washington, D.C. on this very subject...Pain Management and where to find it. It was an exciting few days to say the least and I'm pleased to report that OUR VOICES ARE BEING HEARD ON CAPITOL HILL FOLKS!!! At a press conference on Monday September 8, a new virtual text program on Pain Management was introduced to the media. It will be available in 2004 to medical students as an on-line text, free of charge. After speaking with many people involved in the care and treatment of chronic pain patients, I can tell you for a fact that it's NOT widely known in the medical community that chronic pain is, by far, one of the most under-treated if not un-treated illnesses in this country. Not enough docs know how to treat if, and certainly too many docs are afraid to treat it. One of the speakers at the press conference was former Health and Human Services Secretary Dr. Louis Sullivan who stated that " Untreated pain, tragically, is an epidemic in the United States " . Dr. Satcher, Former Surgeon General of the United States told the group that " nearly 50 million Americans---almost one quarter of our adult population---suffer from persistent pain. " " The social costs of pain also can be staggering, reaching one-hundred billion dollars annually from, among other causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen, President of the Association of Medical Colleges stated, " If we are to treat a future generation of pain patients, we must first educate the next generation of doctors who will care for them. " And then of course, there was little ol' me...who spoke at the very beginning of the press conference to supposedly " put a face on chronic pain " ...at least that's how I was introduced!! Folks, let me tell you, I've never been so scared yet so unbelievably motivated in my life!! After speaking with several members on the Board of the American Pain Foundation after a rehearsal the night before the news conference, I realized that it's people like us that they really want and need to hear from!! Many of them had never even heard of Flatback Syndrome or HARMS, so besides telling them what it's like to feel so frustrated looking for someone to treat my pain after going through so many difficult surgeries, I also had the unique opportunity to put FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The story was picked up by the AP and Reuters news wires and I also gave one-on- one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In every interview I talked about Flatback and it's " first cousin " , PAIN!! I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of Oxycontin...it having been the subject of plenty of BAD press in recent years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin. I have been on Oxycontin CR for 18 months and they have been the best 18 months I've had in a very long time. One thing I repeated over and over (and over!!) again, in the press conference and in every interview I gave, was that " a person's quality of life is directly proportionate to their functionality and if you can't function, you have NO quality of life! " Too many medications I was prescribed over a 6 year period of time, (pre and post revision surgery) made it impossible for me to function at all; I was either too gorked to see and talk or too nauseated to leave the house. Oxycontin CR was the first med I was EVER prescribed that did none of those things to me. But even though it was Perdue who picked up the tab for me to stay in D.C. for 3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on a piece of paper in front of me and I really respect them for that. The doc I FINALLY found to do my Pain Management is, of all things, a Primary Care physician who has taken continuing education courses on Pain Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that basically stated I would not attempt to get drugs for pain from any other doctor; that I would only take the amount prescribed; that I would honestly report any side effects immediately; and that if I missed/canceled more than 2 appointments in a one year period of time that I would be immediately dropped from the pain program. After all the crap I had tolerated from other doctors, even so-called Pain Management doctors,...everything from being told that the pain was in my head and I needed a psychiatrist (which I saw to keep him happy! The psychiatrist took one look at my post-revision x-rays and said " I think it's your doctor who needs to come see me! " )to being told that my pain was due to menopause!! I'm guessing that there are many of you out there reading this who are saying to yourselves, " Oh my God, that's exactly what I've been told, too!! " Well take heart folks...there really are doctors who don't think we're nuts or that we're all menopausal...I'm sure that's a big relief to all you guys out there!!! The problem is finding one of them and getting good, reliable, treatment (which may or may not include opoids). Hopefully, the days of being unable to find treatment for chronic pain are quickly coming to an end (I know...my mouth to God's ears!!). Just as it's been so difficult for many of us to find someone competent enough to treat our Flatback, be it surgical or non-surgical, it's at least that difficult to find someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been most quoted on FOX News, CNN, USA Today and several other news sources, are these... " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. " By the way, the med student program is called TOP MED OR " TOPICS ON PAIN MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of patients of all ages suffering from different types of pain. It will be made available free of charge to medical students across the country in 2004. Ideally, Pain Management will one day be a required course for all medical students, interns and residents. That day is fast approaching and I've had the privilege of being included in on this ground-breaking work. I took copies of many of the e-mails regarding pain and pain management or lack thereof, included on this web site, (taking GREAT care to make sure that no one's e- mail address and/or name appeared anywhere on the printed copy) and passed them on to several doctors, medical school professors, pharmaceutical manufacturers reps and also to several senators and congress-people that were present at the press conference. Some of your personal stories of pain and surgery really raised some eyebrows and got more than a few conversations going!!! As one of the Perdue folks said to me as I was getting in a car to come back home... " I don't know how we'll ever be able to thank you for all you've done for us the past few days. You've put a face on the issue of chronic pain here on Capitol Hill; and you've even managed to get some of these people to quit talking and thinking only about themselves and start talking about you and all the people like you who suffer in silence every day. They won't soon forget the face and voice you've put on chronic pain!! God bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the first time. " SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS SUBJECT!! I won't give up our fight...I've only just begun to get people to listen to me. All the best, Beth P.S. Anyone looking for a physician and/or Pain Management program in their area should check out the following web sites: The American Board of Pain Medicine www.abpm.org The American Pain Foundation www.painfoundation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Wow Beth, What a great experience for you and what an unbelievable great job you did for us, who were waiting here, cheering you on. You did an amazing job, and I don't even have the words to say, except " Thank you Beth, I know everyone here appreciates what you're doing as much as I do! Keep up the good work! Deb >From: bunce1117@... >Reply- > >Subject: Re: mission >Date: Mon, 15 Sep 2003 01:17:36 +0000 > >Carol, > I've just returned from a very enlightening few days in Washington, D.C. >on >this very subject...Pain Management and where to find it. It was an >exciting >few days to say the least and I'm pleased to report that OUR VOICES ARE >BEING >HEARD ON CAPITOL HILL FOLKS!!! > At a press conference on Monday September 8, a new virtual text program >on >Pain Management was introduced to the media. It will be available in 2004 >to >medical students as an on-line text, free of charge. After speaking with >many >people involved in the care and treatment of chronic pain patients, I can >tell >you for a fact that it's NOT widely known in the medical community that >chronic pain is, by far, one of the most under-treated if not un-treated >illnesses in this country. Not enough docs know how to treat if, and >certainly >too many docs are afraid to treat it. One of the speakers at the press >conference was former Health and Human Services Secretary Dr. Louis >Sullivan >who stated that " Untreated pain, tragically, is an epidemic in the United >States " . Dr. Satcher, Former Surgeon General of the United States >told >the group that " nearly 50 million Americans---almost one quarter of our >adult >population---suffer from persistent pain. " " The social costs of pain also >can >be staggering, reaching one-hundred billion dollars annually from, among >other >causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen, >President of the Association of Medical Colleges stated, " If we are to >treat a >future generation of pain patients, we must first educate the next >generation >of doctors who will care for them. " > And then of course, there was little ol' me...who spoke at the very >beginning of the press conference to supposedly " put a face on chronic >pain " ...at least that's how I was introduced!! Folks, let me tell you, I've >never been so scared yet so unbelievably motivated in my life!! After >speaking >with several members on the Board of the American Pain Foundation after a >rehearsal the night before the news conference, I realized that it's people >like us that they really want and need to hear from!! Many of them had >never >even heard of Flatback Syndrome or HARMS, so besides telling them what it's >like to feel so frustrated looking for someone to treat my pain after going >through so many difficult surgeries, I also had the unique opportunity to >put >FLATBACK SYNDROME/HARMS front and center in front of millions of people!! >The >story was picked up by the AP and Reuters news wires and I also gave >one-on- >one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. >In >every interview I talked about Flatback and it's " first cousin " , PAIN!! > I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of >Oxycontin...it having been the subject of plenty of BAD press in recent >years). They have hired a PR firm in D.C. to get some GOOD press on >Oxycontin. >I have been on Oxycontin CR for 18 months and they have been the best 18 >months I've had in a very long time. One thing I repeated over and over >(and >over!!) again, in the press conference and in every interview I gave, was >that " a person's quality of life is directly proportionate to their >functionality and if you can't function, you have NO quality of life! " Too >many medications I was prescribed over a 6 year period of time, (pre and >post >revision surgery) made it impossible for me to function at all; I was >either >too gorked to see and talk or too nauseated to leave the house. Oxycontin >CR >was the first med I was EVER prescribed that did none of those things to >me. >But even though it was Perdue who picked up the tab for me to stay in D.C. >for >3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or >on >a piece of paper in front of me and I really respect them for that. > The doc I FINALLY found to do my Pain Management is, of all things, a >Primary Care physician who has taken continuing education courses on Pain >Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin >and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him >that >basically stated I would not attempt to get drugs for pain from any other >doctor; that I would only take the amount prescribed; that I would honestly >report any side effects immediately; and that if I missed/canceled more >than 2 >appointments in a one year period of time that I would be immediately >dropped >from the pain program. After all the crap I had tolerated from other >doctors, >even so-called Pain Management doctors,...everything from being told that >the >pain was in my head and I needed a psychiatrist (which I saw to keep him >happy! The psychiatrist took one look at my post-revision x-rays and said > " I >think it's your doctor who needs to come see me! " )to being told that my >pain >was due to menopause!! I'm guessing that there are many of you out there >reading this who are saying to yourselves, " Oh my God, that's exactly what >I've been told, too!! " Well take heart folks...there really are doctors who >don't think we're nuts or that we're all menopausal...I'm sure that's a big >relief to all you guys out there!!! The problem is finding one of them and >getting good, reliable, treatment (which may or may not include opoids). > Hopefully, the days of being unable to find treatment for chronic pain >are >quickly coming to an end (I know...my mouth to God's ears!!). Just as it's >been so difficult for many of us to find someone competent enough to treat >our >Flatback, be it surgical or non-surgical, it's at least that difficult to >find >someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN >IS >PAIN!! The last 2 lines of my speech to the media...the 2 lines that have >been >most quoted on FOX News, CNN, USA Today and several other news sources, are >these... > " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH >FUTURE >DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I >DID. " > > By the way, the med student program is called TOP MED OR " TOPICS ON PAIN >MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment >of >patients of all ages suffering from different types of pain. It will be >made >available free of charge to medical students across the country in 2004. >Ideally, Pain Management will one day be a required course for all medical >students, interns and residents. That day is fast approaching and I've had >the privilege of being included in on this ground-breaking work. I took >copies >of many of the e-mails regarding pain and pain management or lack thereof, >included on this web site, (taking GREAT care to make sure that no one's e- >mail address and/or name appeared anywhere on the printed copy) and passed >them on to several doctors, medical school professors, pharmaceutical >manufacturers reps and also to several senators and congress-people that >were >present at the press conference. Some of your personal stories of pain and >surgery really raised some eyebrows and got more than a few conversations >going!!! As one of the Perdue folks said to me as I was getting in a car to >come back home... " I don't know how we'll ever be able to thank you for all >you've done for us the past few days. You've put a face on the issue of >chronic pain here on Capitol Hill; and you've even managed to get some of >these people to quit talking and thinking only about themselves and start >talking about you and all the people like you who suffer in silence every >day. >They won't soon forget the face and voice you've put on chronic pain!! God >bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE >HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE >PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for >the >first time. " > SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON >THIS >SUBJECT!! I won't give up our fight...I've only just begun to get people to >listen to me. > >All the best, >Beth > >P.S. Anyone looking for a physician and/or Pain Management program in their >area should check out the following web sites: > >The American Board of Pain Medicine www.abpm.org >The American Pain Foundation www.painfoundation.org > > _________________________________________________________________ Need more e-mail storage? Get 10MB with Hotmail Extra Storage. http://join.msn.com/?PAGE=features/es Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Sharon, Can't say for sure when any of the broadcasts will be aired. I also taped an interview (technically called a VNR or Video News Release) from here at my home for a crew from New Jersey. That piece is being edited this week for cable broadcast sometime this month...September is, for those who are unaware like I was until all this happened, is National Pain Awareness month...that's why the push to do all this ASAP to get it aired. I will be contacted by the NJ crew when that is going to be aired and let you all know...for those who might be curious as to " Just who the heck is this woman talking about pain and Flatback??!! " Thanks for the interest. All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 In a message dated 9/15/03 4:43:39 PM Eastern Daylight Time, bunce1117@... writes: > I will be contacted by the > NJ crew when that is going to be aired and let you all know...for those who > might be curious as to " Just who the heck is this woman talking about pain > and > Flatback??!! " Thanks for the interest. > I'd like to see this program Please let us know when it'll be shown if they do notify you. NJ has a cable channel news #12 and on the weekends at 12 noon they broadcast a medical info 1/2 hour. They also broadcast ofther medical spots during the week. It would be great to have info given on the air to educate everyone! Thank you for what you're doing! June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2005 Report Share Posted May 11, 2005 DEAR FRED, I wish you would not remove your name from this list serve. I think we need more people to share their experiences. If you leave, we have one less person to inform us of how treatments have worked and how the disease develops. I urge you to ignore the input that you do not find helpful, but stay here because we all need you. Carolyn Swift, age 78, Dx 9/04, IVIG March and April 05, asymptomatic except for cough, which may or may not be related. > , > > With great enthusiasm I joined your SLL-CLL listserve hoping both to learn more about my disease and to occasionally list my experiences with the hope they might prove of some value to others. > > Unfortunately, this platform too often has become all but a monologue of verbose, redundant bloviations from one source who has posted almost a dozen times in the last four days alone. In order to show respect for my fellow patients, I try to read every word that is posted on your list. But that is no longer possible as much of what this person writes is either inane, self-serving - or worse. He really ought to start his own listserve and see how many folks will volunteer to read his musings. > > , thank you sincerely for all you've done and are doing. May you whip the beast in short order. Please remove my name from you mailing list. > > Fred Hummel, 78, Arcata, CA; > CLL/SLL dx 1.98; > Fludara 2000; > Fludara, Rituxan, Novantrone, Decadron, 2002; > Rituxan, 2004; > Rituxan, Chlorambucil, Prednisone, 2005. > > Quote Link to comment Share on other sites More sharing options...
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