Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 I'll say it again. I went to specialists and non specialists in Northern CA, including Stanford and San Francisco and was NEVER referred to a revision specialist or even a scoliosis specialist regarding the failed 1979 scoliosis fusion symptoms I have suffered since the early 1980s. I found UCSF and Dr Bradford through internet contact only. The information on possible problems with old scoliosis fusion was not easily obtained until about 2000. If I did not get myself to Bradford I have no doubt that I would still be running to various spine docs without a diagnosis. I have seen specialists since seeing Bradford and this stupidly named Flatback Syndrome bring a snicker from all of these docs. No, the information is not readily available! My prediction is that with information becoming more easily available patients who had no where to turn will be showing up at the right docs instead of suffering for years and years as I have. I have no idea how someone can say that my experience is wrong. Not only have I experienced this and have the records to show it, I have spoken to many many people who have felt so lonely and self blaming in their long standing pain. Just the fact that they show up on this web site saying "oh, I'm so glad I have found others who are in the same situation, I was so lonely". For God's sake, how can someone close their eyes to these people! How can such a hard stance be taken against people who have gone from doc to doc begging for help for years. We are asking for some compassion! If people who haven't had years of pain with an old scoliosis fusion/H rod haven't experienced this, then how can they comment that it wasn't that bad? I just don't understand. In the year 2000 I just learned, after a month of searching for internet information, about this really stupid term "Flatback" and then the term "revision" to fix the symptomatic flatback. THE INFORMATION WAS IN NO WAY EASILY AVAILABLE AND WE WERE NOT ROUTED TO THE NEAREST REVISION DOC! How can one ask for information regarding flartback when we didn't even know about the term. I am baffled. The reason there is newer instrumentation for those of you who needed scoliosis surgery recently, is because it is the next generation to the old rods, an evolution, and those with the old instrumentation who might be suffering are owed, I think, just a little compassion and maybe even a tad of respect for going down this path first. Many people are doing fine with their old rods and fusion. And, many are not, and have been suffering, alone, for years. suzy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Um, Suzy, did someone HERE say that your experience was not as bad as you say? I would never say that. From what you've shared, I'd say your experience has been unusually horrendous. And you have demonstrated amazing persistance, courage, and compassion toward the rest of us. Because of your freely sharing what you have learned, those of us who sought it later have not had a particularly hard time finding information online. And if your experience is, as I surmise, one of the worst, then it follows that it has not been as bad for many of us. Because this is a minority health issue many physicians are still not acquainted with it, and you can't get knowledge out of an ignorant person, even if s/he is a physician. My internist has now heard of it, because I educated her, and in the unlikely event she ever has another patient with flatback, she may remember and help that patient get help. I feel for you, facing this huge surgery and wishing you could get it over with already. You have my sincere hopes and prayers that your revision is a huge success and you get your life back. Respect? You've surely got mine! 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. > I'll say it again. I went to specialists and non specialists in > Northern CA, including Stanford and San Francisco and was NEVER referred > to a revision specialist or even a scoliosis specialist regarding the > failed 1979 scoliosis fusion symptoms I have suffered since the early > 1980s. I found UCSF and Dr Bradford through internet contact only. The > information on possible problems with old scoliosis fusion was not > easily obtained until about 2000. If I did not get myself to Bradford I > have no doubt that I would still be running to various spine docs > without a diagnosis. I have seen specialists since seeing Bradford and > this stupidly named Flatback Syndrome bring a snicker from all of these > docs. No, the information is not readily available! > My prediction is that with information becoming more easily available > patients who had no where to turn will be showing up at the right docs > instead of suffering for years and years as I have. > I have no idea how someone can say that my experience is wrong. Not > only have I experienced this and have the records to show it, I have > spoken to many many people who have felt so lonely and self blaming in > their long standing pain. Just the fact that they show up on this web > site saying " oh, I'm so glad I have found others who are in the same > situation, I was so lonely " . For God's sake, how can someone close their > eyes to these people! How can such a hard stance be taken against > people who have gone from doc to doc begging for help for years. > We are asking for some compassion! If people who haven't had years of > pain with an old scoliosis fusion/H rod haven't experienced this, then > how can they comment that it wasn't that bad? I just don't understand. > In the year 2000 I just learned, after a month of searching for > internet information, about this really stupid term " Flatback " and then > the term " revision " to fix the symptomatic flatback. THE INFORMATION > WAS IN NO WAY EASILY AVAILABLE AND WE WERE NOT ROUTED TO THE NEAREST > REVISION DOC! How can one ask for information regarding flartback when > we didn't even know about the term. > I am baffled. The reason there is newer instrumentation for those of > you who needed scoliosis surgery recently, is because it is the next > generation to the old rods, an evolution, and those with the old > instrumentation who might be suffering are owed, I think, just a little > compassion and maybe even a tad of respect for going down this path > first. Many people are doing fine with their old rods and fusion. And, > many are not, and have been suffering, alone, for years. > suzy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Dear Suzy, I just have to speak out after reading your posts from today to tell you that even though I am one of those recent revision patients (no Harrington Rods), I would never, never think that you or anyone on this site is "feeling sorry for themselves" or having a "pity party." (Yes, I read that original letter so I know what you're referring to). You are so right in your opinion that we're all in this together - where else can we go for support and understanding? And I want to tell you this - I absolutely do have respect for those of you who went through these surgeries first. It sounds as if you had horrific experiences, and I am so sorry that anyone had to be treated that way by the medical profession. But please, I beg you, let's not divide ourselves into two camps - flatback because of Harrington rods, or flatback w/o. I had a/p revision surgery (to the sacrum) one year ago. My flatback syndrome was the result of degenerative lumbar scoliosis, not as a result from the complications of Harrington rods like you and almost everyone else who has posted to this site. But although the reasons are different for the syndrome, I share the feelings that you & others have so eloquently expressed. I did not know that I had revision surgery until after the fact! And this was in 2002! And I went through 6 years -1993 till 1999 - trying to find a diagnosis of what was causing my worsening condition. Believe me when I say, I too went through horrific experiences with the medical profession! I really can't even count how many doctors I saw until one kind pain doctor told me the problem was my scoliosis and directed me to a well-known scoli expert in the Midwest (who literally diagnosed me in about 20 seconds!) When I found this site, I realized that I had made a huge decision of having my "revision" surgery without a complete understanding of what I was getting myself into. The description was "extending the rods." As you said, "How can you ask about something if you don't know about it?!" I have given a great deal of thought into whether I would have decided to have this surgery had I really understood the ramifications. I decided that I would have gone ahead anyway - my deciding factor was the need to be able to walk. I have low bone density - degenerative scoliosis is closely linked to osteoporosis - and I know I have to be able to at least walk so that I don't go into osteoporosis. My point here is that information on revision surgery is still not being dispersed - the word is not being used! My purpose in using this site is to gain information or give information, if I can, and talk to the only people in the world who really share the same experiences that I have gone through - unrelenting pain, Where else can I go for support? It's not that I don't have a great family and husband, but can they really understand the depth and intensity of feeling that is involved in multiple surgeries? (I have a 3rd one upcoming to remove painful pelvic rods & screws) Can they give me the information that I seek? Can they truly say "I know how you feel?" I have no desire or intent to make any type of judgment on anyone's post. I have thoroughly enjoyed reading your posts, Suzy. I have learned from them, been amused and saddened, but always uplifted by your optimism and outlook. I look at our different experiences, not in a divisive way, but as an opportunity to learn, and always, always, to feel compassion for all of us. I am lucky to have found a site that is so specifically targeted to my particular condition - while there are other scoliosis sites, they target the general scoliosis audience. When you're flatback, you're flatback - regardless of the reason! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Hi Sharon, You're absolutely right about the Salvaged Sisters of Scoliosis site - in fact, I have them in My Favorites for easy access! I've read many of your posts, also, and learned much from them. Although we are all so different in our specific vertebral "anomalies," we all share the need to seek answers for the betrayal of our bodies. I learn something new each time I logon to this site or Salvaged Sisters, and I am thankful to all who have the courage to share such personal feelings and experiences. Carol in the Midwest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Carol, I heartily agree with all your comments in your latest post, but am abbreviating the below quote in the interest of byte conservation. As to where else you can go if you need more scoliosis/flatback support, Kathleen Wigham's " Salvaged Sisters of Scoliosis " is also excellent, and a great complement to this one. http://forums.delphiforums.com/adultscoliosis/messages?msg=374.9 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. Where else can I go > for support? It's not that I don't have a great family and husband, but can > they really understand the depth and intensity of feeling that is involved in > multiple surgeries? (I have a 3rd one upcoming to remove painful pelvic rods & > screws) Can they give me the information that I seek? Can they truly say " I > know how you feel? " I have no desire or intent to make any type of judgment > on anyone's post. I have thoroughly enjoyed reading your posts, Suzy. I have > learned from them, been amused and saddened, but always uplifted by your > optimism and outlook. I look at our different experiences, not in a divisive > way, but as an opportunity to learn, and always, always, to feel compassion > for all of us. I am lucky to have found a site that is so specifically > targeted to my particular condition - while there are other scoliosis sites, > they target the general scoliosis audience. When you're flatback, you're > flatback - regardless of the reason! > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 Hi there, I would like the full web address for the salvaged sisters site. I have not been able to find it. Thanks Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 Sharon, Thankyou for the sites. Everyone is so helpful here. Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 This is it, Kate. http://forums.delphiforums.com/adultscoliosis/messages Delphi forums are very quirky. At first you won't get in if you aren't registered. Register and log in, then go back and click the link again. That should bring you into the forum. 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. > Hi there, > I would like the full web address for the salvaged sisters site. I > have not been able to find it. Thanks Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 Just a note to thank you for your comments Carol -- right on, bravo; your points were well taken. Hope you will stay with the list, too. I need to get up to speed with all the mail -- may still be behind the times with all these posts, having been out of the loop for a bit -- but if you haven't already gone into detail on the surgery you still need for the pelvic rods and screws, I would be most interested in hearing more about it. (I had a few pelvic rods and screws of my own at last count, and just happened to have some new and weird sensations today -- this particular hardware seems to get pretty annoying and possibly compress a few key nerves and the like.) I'm wondering what kind of trouble clued you in to the problem and the need for surgery. . . Eliana > Dear Suzy, > > I just have to speak out after reading your posts from today to tell you that > even though I am one of those recent revision patients (no Harrington Rods), > I would never, never think that you or anyone on this site is " feeling sorry > for themselves " or having a " pity party. " (Yes, I read that original letter > so I know what you're referring to). You are so right in your opinion that > we're all in this together - where else can we go for support and > understanding? And I want to tell you this - I absolutely do have respect for > those of you who went through these surgeries first. It sounds as if you had > horrific experiences, and I am so sorry that anyone had to be treated that > way by the medical profession. But please, I beg you, let's not divide > ourselves into two camps - flatback because of Harrington rods, or flatback > w/o. I had a/p revision surgery (to the sacrum) one year ago. My flatback > syndrome was the result of degenerative lumbar scoliosis, not as a result > from the complications of Harrington rods like you and almost everyone else > who has posted to this site. But although the reasons are different for the > syndrome, I share the feelings that you & others have so eloquently > expressed. I did not know that I had revision surgery until after the fact! > And this was in 2002! And I went through 6 years -1993 till 1999 - trying to > find a diagnosis of what was causing my worsening condition. Believe me when > I say, I too went through horrific experiences with the medical profession! I > really can't even count how many doctors I saw until one kind pain doctor > told me the problem was my scoliosis and directed me to a well- known scoli > expert in the Midwest (who literally diagnosed me in about 20 seconds!) When > I found this site, I realized that I had made a huge decision of having my > " revision " surgery without a complete understanding of what I was getting > myself into. The description was " extending the rods. " As you said, " How can > you ask about something if you don't know about it?! " I have given a great > deal of thought into whether I would have decided to have this surgery had I > really understood the ramifications. I decided that I would have gone ahead > anyway - my deciding factor was the need to be able to walk. I have low bone > density - degenerative scoliosis is closely linked to osteoporosis - and I > know I have to be able to at least walk so that I don't go into osteoporosis. > My point here is that information on revision surgery is still not being > dispersed - the word is not being used! > > My purpose in using this site is to gain information or give information, if > I can, and talk to the only people in the world who really share the same > experiences that I have gone through - unrelenting pain, Where else can I go > for support? It's not that I don't have a great family and husband, but can > they really understand the depth and intensity of feeling that is involved in > multiple surgeries? (I have a 3rd one upcoming to remove painful pelvic rods & > screws) Can they give me the information that I seek? Can they truly say " I > know how you feel? " I have no desire or intent to make any type of judgment > on anyone's post. I have thoroughly enjoyed reading your posts, Suzy. I have > learned from them, been amused and saddened, but always uplifted by your > optimism and outlook. I look at our different experiences, not in a divisive > way, but as an opportunity to learn, and always, always, to feel compassion > for all of us. I am lucky to have found a site that is so specifically > targeted to my particular condition - while there are other scoliosis sites, > they target the general scoliosis audience. When you're flatback, you're > flatback - regardless of the reason! > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 Dear Eliana, I'm very pleased to "meet" you! I have no intention of leaving this list - I feel that I have gained a great deal of knowledge just from the short time I've been a member, and knowledge is empowering. I'm very glad to have found a group of people with a shared set of experiences; specifically, flatback. Sharing these experiences benefits me when I am just a reader of posts and when I actively participate in a discussion. You have given us an opportunity to participate in a forum that allows us to openly express our fears, our hopes, our sorrows and our joys. This sense of community also helps us to maintain our self-respect in dealing with a highly intrusive condition. For all this I thank you! As to your question re: my pelvic screws and rods; I was told that these pieces of hardware would be painful and prominent when the revision surgery was explained by my surgeon. The reason was my small-boned, thin build and was confirmed by another dr. visited for a second opinion. So while I hoped for a different outcome, I was not surprised by the reality. I just passed my one year anniversary; the first 6-7 months I experienced painful spasm in my beautiful new lordosis area caused by the "push-pull" effect on my muscles. While I expected to have difficulty sitting for a few months, I never expected to not be able to sit in my recliner chair at 6-7 months post-surg. I mentioned this at my 8 month checkup (late for the 6 month, oops!) but did not receive much concern. We had friends over for New Year's Eve (10 months post-op) and I sat in my recliner chair to watch movies even though I knew I would pay for it. I knew the moment I put weight on my sacrum-tailbone area, terrible pain would ensue! I never recovered from that incident. The pain kept getting worse. I decided to try physical therapy in the hope that it would alleviate the pain. Unfortunately, the massage and the movement made it worse. Sometimes it would get so bad I thought the hardware was trying to come out of my body (ever see the movie Aliens?). I work out of my home, and would literally walk around the house all day, phone in hand. I stood at the counter to eat meals instead of sitting. I couldn't lay on my back in bed; even that pressure was too painful. I thought I had fractured my tailbone. I insisted on going to my 1 year checkup early where I learned that I had coccydynia - severe inflammation of the tailbone. I begged to get the screws and rods out - they are severely irritating and causing inflammation, too. But their area of pain is different from the tailbone. It's higher and follows the length of the rods. While I can't feel the rods themselves, I can follow their path by the pain of gentle palpation. I avoid going up stairs because I can feel the hardware moving. The removal surgery entails cutting the rod off at the bottom, removing the horizontal sacral pieces and screws that attach to the bottom of the rod and removing the lateral pelvic rods and screws. No autologous blood, 2-3 days in hospital. They said only a couple of weeks to recuperate. Based on this previous year's recovery, do I believe that? Does nne Banks keep in touch with you? I would like to talk to you privately about her post asking about discography. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Carol, I am finally catching up with some past posts at " Feisty " and just found this one. I'm so sorry -- apparently I overlooked it before. No, I have not heard from nne Banks. But have been having some email problems. I think all is well now. Please feel free to write to me privately: poetryperson@... -- In , carolkurt@a... wrote: > Dear Eliana, > > I'm very pleased to " meet " you! I have no intention of leaving this list - I > feel that I have gained a great deal of knowledge just from the short time > I've been a member, and knowledge is empowering. I'm very glad to have found > a group of people with a shared set of experiences; specifically, flatback. > Sharing these experiences benefits me when I am just a reader of posts and > when I actively participate in a discussion. You have given us an opportunity > to participate in a forum that allows us to openly express our fears, our > hopes, our sorrows and our joys. This sense of community also helps us to > maintain our self-respect in dealing with a highly intrusive condition. For > all this I thank you! > > As to your question re: my pelvic screws and rods; I was told that these > pieces of hardware would be painful and prominent when the revision surgery > was explained by my surgeon. The reason was my small-boned, thin build and > was confirmed by another dr. visited for a second opinion. So while I hoped > for a different outcome, I was not surprised by the reality. I just passed my > one year anniversary; the first 6-7 months I experienced painful spasm in my > beautiful new lordosis area caused by the " push-pull " effect on my muscles. > While I expected to have difficulty sitting for a few months, I never > expected to not be able to sit in my recliner chair at 6-7 months post-surg. > I mentioned this at my 8 month checkup (late for the 6 month, oops!) but did > not receive much concern. We had friends over for New Year's Eve (10 months > post-op) and I sat in my recliner chair to watch movies even though I knew I > would pay for it. I knew the moment I put weight on my sacrum- tailbone area, > terrible pain would ensue! I never recovered from that incident. The pain > kept getting worse. I decided to try physical therapy in the hope that it > would alleviate the pain. Unfortunately, the massage and the movement made it > worse. Sometimes it would get so bad I thought the hardware was trying to > come out of my body (ever see the movie Aliens?). I work out of my home, and > would literally walk around the house all day, phone in hand. I stood at the > counter to eat meals instead of sitting. I couldn't lay on my back in bed; > even that pressure was too painful. I thought I had fractured my tailbone. I > insisted on going to my 1 year checkup early where I learned that I had > coccydynia - severe inflammation of the tailbone. I begged to get the screws > and rods out - they are severely irritating and causing inflammation, too. > But their area of pain is different from the tailbone. It's higher and > follows the length of the rods. While I can't feel the rods themselves, I can > follow their path by the pain of gentle palpation. I avoid going up stairs > because I can feel the hardware moving. The removal surgery entails cutting > the rod off at the bottom, removing the horizontal sacral pieces and screws > that attach to the bottom of the rod and removing the lateral pelvic rods > and screws. No autologous blood, 2-3 days in hospital. They said only a > couple of weeks to recuperate. Based on this previous year's recovery, do I > believe that? > > Does nne Banks keep in touch with you? I would like to talk to you > privately about her post asking about discography. > Carol Quote Link to comment Share on other sites More sharing options...
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