Guest guest Posted May 22, 2006 Report Posted May 22, 2006 Loriann -- Thanks for reminding me to check the script -- I find that I must have left it at the pain clinic, duh. (I have the script for my supplemental pain pills -- still need one now and then for breakthrough pain -- but not the one for PT.) I don't believe my PA put any particular goals or purposes on the Rx, but I will have to email her for another. At my request, she specified aquatics and Feldenkrais, but that's all I recall. I have never met any PT who had heard of flatback or worked with a patient like me. I have to suspect that one who gave you the no-problem attitude might have been bluffing. Don't worry, I am the first to yell "Foul!" when any PT suggests something questionable. I screamed bloody murder when one of the early, pre-revision PTs urged me to begin with lots of bilateral leg lifts. In fact, I believe I fired her post-haste. I also screamed, I believe LITERALLY, when some off-the-wall sadist showed up within one day of one of my revision surgeries and got me onto my feet. I guess I was too weak to protest. Hence my own motto, "You can never bring too many family members, friends, and advocates to the hospital with you. Make up a roster and rotate shifts at your bedside . . . " (My motto goes on for a few more pages, but I suspect you get my drift.) It sounds as if you have had similarly dismal experiences. I hope your current PT is better than those you dealt with previously. Your situation is so especially complex -- anyone who deals with you should be taking the utmost care, not dismissing your concerns with generic reassurances. Have you considered quizzing this type of PT about his exact experience with flatback or flatback in combination with your hip situation? I know there must be "nice" ways to question someone on his clinical track record -- not that I am necessarily the most diplomatic questioner myself, given my background as an attorney who got an "A" in trial advocacy (a few short years before my flatback totally derailed my new legal career!). And not that any professional should take offense at being asked for some highlights of his curriculum vitae, so to speak. (I've said it before: Two of the many things I liked about Dr. Rand were his total unflappability and his straight, informative answers in response to my rigorous pre-op cross-examination.) Alas, some capable health professionals can be slightly prickly or defensive, especially earlier on in their careers. It is hard to know where to draw the line -- how much we should put up with from some of these harried health professionals, given the current frustrating and pressuresome managed care scene, etc. Thanks for your good wishes. Best, > > > >> > > > I really enjoyed your straight-shooting post. I could relate to > > > > everything you said. Isn't it sad that some docs are STILL not > > > > acknowledging the reality of Harrington-rod-induced deformity? > > The > > > > guy who did this to me likewise blamed my severe flatback > > on "your > > > > disk disease." Fortunately the next few docs I consulted told me > > the > > > > truth. That was back in the late 90s in Chicago. It's shameful > > that > > > > wherever you may live (what is "BR"?), most medical > > professionals > > > > are still in the closet regarding flatback. The last thing most > > of > > > > us need is euphemisms and evasions. My favorite is "failed > > back" -- > > > > NOT. It is a diagnosis that says absolutely nothing while sort > > of > > > > implicitly accusing the patient of something. A series of > > surgeons > > > > messed up your spine, leaving you in pain for the rest of your > > life? > > > > Aha! This means you flunked your treatment and are thus > > a "failed > > > > back."> > > > > > > > This reminds me of the temporary marks my newborn had on his > > poor > > > > little face thanks to a forceps delivery. When I mildly > > questioned > > > > my OB about this, he snapped back, "Those marks aren't from the > > > > forceps -- your vagina did that to him!"> > > > > > > > Your pain management doctor sounds like a real find! After six > > > > revisions, I finally consented to have a morphine pump implanted > > in > > > > my abdomen. My insurance gets billed by a pain management MD I > > have > > > > barely laid eyes on in the past year -- his PA handles all my > > pump > > > > maintenance. I am chronically frustrated and angry about some of > > the > > > > decrees he issues through her, but I seem to have few if any > > other > > > > options. This guy refuses even to speak with me by phone. He was > > > > named a top doctor by a local magazine that publishes the > > local "top > > > > 300" every year. > > > > > > > > Your comments about PTs also hit home. I have yet to meet a > > physical > > > > therapist who knows anything about my condition. > > > > > > > > I would love to be able to ride a bike again, but I don't think > > I > > > > would ever risk it with a fusion from T-3 to S-1.> > > > > > > > Best,> > > > > > >> >> Quote
Guest guest Posted May 22, 2006 Report Posted May 22, 2006 Hi , I'm glad my nosy-ness resulted in something productive for once! And I'm glad that 's Law is sort of broken for you - at least you still had the (more important) pain pill script!! I have to tell you I laughed out loud when I read that your motto goes on for a few more pages..... I go hot and cold on quizzing medical people about their experience. I started out pretty brave and ended up pretty defeated thinking it's near to impossible to find a person with experience with patients with both hip problems and with flatback. I " settled " for a person who seemed willing to listen to me and it worked out well. Sometimes I'm diplomatic when quizzing medical professionals, but it's pretty easy to get frustrated/sarcastic at their responses. Fortunately, the doctors I've seen have good experience and I was fortunate to also find people on this site with both problems, although I don't recall any with hip replacements that also were originally fused to the sacrum like me. I haven't yet asked all of the docs if they have any patients with flatback, a syrinx, AND with hip replacements due to congenital dysplasia and arthritis. Yeesh, I'd better not develop any more problems or it will get even worse!! Enough about me! Good luck with getting your new prescription and with finding a great PT! loriann > > > Loriann -- > > Thanks for reminding me to check the script -- I find that I must have > left it at the pain clinic, duh. (I have the script for my supplemental > pain pills -- still need one now and then for breakthrough pain -- but > not the one for PT.) I don't believe my PA put any particular goals or > purposes on the Rx, but I will have to email her for another. At my > request, she specified aquatics and Feldenkrais, but that's all I > recall. > > I have never met any PT who had heard of flatback or worked with a > patient like me. I have to suspect that one who gave you the no-problem > attitude might have been bluffing. > > Don't worry, I am the first to yell " Foul! " when any PT suggests > something questionable. I screamed bloody murder when one of the early, > pre-revision PTs urged me to begin with lots of bilateral leg lifts. In > fact, I believe I fired her post-haste. > > I also screamed, I believe LITERALLY, when some off-the-wall sadist > showed up within one day of one of my revision surgeries and got me onto > my feet. I guess I was too weak to protest. Hence my own motto, " You can > never bring too many family members, friends, and advocates to the > hospital with you. Make up a roster and rotate shifts at your bedside . > . . " (My motto goes on for a few more pages, but I suspect you get my > drift.) [] > > It sounds as if you have had similarly dismal experiences. I hope your > current PT is better than those you dealt with previously. Your > situation is so especially complex -- anyone who deals with you should > be taking the utmost care, not dismissing your concerns with generic > reassurances. Have you considered quizzing this type of PT about his > exact experience with flatback or flatback in combination with your hip > situation? I know there must be " nice " ways to question someone on his > clinical track record -- not that I am necessarily the most diplomatic > questioner myself, given my background as an attorney who got an " A " in > trial advocacy (a few short years before my flatback totally derailed my > new legal career!). And not that any professional should take offense at > being asked for some highlights of his curriculum vitae, so to speak. > (I've said it before: Two of the many things I liked about Dr. Rand > were his total unflappability and his straight, informative answers in > response to my rigorous pre-op cross-examination.) Alas, some capable > health professionals can be slightly prickly or defensive, especially > earlier on in their careers. It is hard to know where to draw the line > -- how much we should put up with from some of these harried health > professionals, given the current frustrating and pressuresome managed > care scene, etc. > > Thanks for your good wishes. > > Best, > > Quote
Guest guest Posted May 23, 2006 Report Posted May 23, 2006 I actually had one very good PT person who was somewhat familiar with fused spines. To be on the safe side, I called around PT offices and asked if they had anybody who was experienced in working with spinal fusion places, and I took my xray with me to my first visit. I got lucky and had a great experience on my first visit. The second visit, I got a different person and not so good an experience. I ended up deciding that the benefit didn't outweigh my out of pocket cost. > > > > > > > > > > I really enjoyed your straight-shooting post. I could relate to > > > > > everything you said. Isn't it sad that some docs are STILL not > > > > > acknowledging the reality of Harrington-rod-induced deformity? > > > The > > > > > guy who did this to me likewise blamed my severe flatback > > > on " your > > > > > disk disease. " Fortunately the next few docs I consulted told me > > > the > > > > > truth. That was back in the late 90s in Chicago. It's shameful > > > that > > > > > wherever you may live (what is " BR " ?), most medical > > > professionals > > > > > are still in the closet regarding flatback. The last thing most > > > of > > > > > us need is euphemisms and evasions. My favorite is " failed > > > back " -- > > > > > NOT. It is a diagnosis that says absolutely nothing while sort > > > of > > > > > implicitly accusing the patient of something. A series of > > > surgeons > > > > > messed up your spine, leaving you in pain for the rest of your > > > life? > > > > > Aha! This means you flunked your treatment and are thus > > > a " failed > > > > > back. " > > > > > > > > > > This reminds me of the temporary marks my newborn had on his > > > poor > > > > > little face thanks to a forceps delivery. When I mildly > > > questioned > > > > > my OB about this, he snapped back, " Those marks aren't from the > > > > > forceps -- your vagina did that to him! " > > > > > > > > > > Your pain management doctor sounds like a real find! After six > > > > > revisions, I finally consented to have a morphine pump implanted > > > in > > > > > my abdomen. My insurance gets billed by a pain management MD I > > > have > > > > > barely laid eyes on in the past year -- his PA handles all my > > > pump > > > > > maintenance. I am chronically frustrated and angry about some of > > > the > > > > > decrees he issues through her, but I seem to have few if any > > > other > > > > > options. This guy refuses even to speak with me by phone. He was > > > > > named a top doctor by a local magazine that publishes the > > > local " top > > > > > 300 " every year. > > > > > > > > > > Your comments about PTs also hit home. I have yet to meet a > > > physical > > > > > therapist who knows anything about my condition. > > > > > > > > > > I would love to be able to ride a bike again, but I don't think > > > I > > > > > would ever risk it with a fusion from T-3 to S-1. > > > > > > > > > > Best, > > > > > > > > > > > > > > > Quote
Guest guest Posted May 23, 2006 Report Posted May 23, 2006 funny you should mention the hip problems again today. Upon reading my old MRI report, I see that the doctor mentions that the tilt of the pelvis may result in hip problems and that I should see a specialist for that! > > > > > > Loriann -- > > > > Thanks for reminding me to check the script -- I find that I must have > > left it at the pain clinic, duh. (I have the script for my supplemental > > pain pills -- still need one now and then for breakthrough pain - - but > > not the one for PT.) I don't believe my PA put any particular goals or > > purposes on the Rx, but I will have to email her for another. At my > > request, she specified aquatics and Feldenkrais, but that's all I > > recall. > > > > I have never met any PT who had heard of flatback or worked with a > > patient like me. I have to suspect that one who gave you the no- problem > > attitude might have been bluffing. > > > > Don't worry, I am the first to yell " Foul! " when any PT suggests > > something questionable. I screamed bloody murder when one of the early, > > pre-revision PTs urged me to begin with lots of bilateral leg lifts. In > > fact, I believe I fired her post-haste. > > > > I also screamed, I believe LITERALLY, when some off-the-wall sadist > > showed up within one day of one of my revision surgeries and got me onto > > my feet. I guess I was too weak to protest. Hence my own motto, " You can > > never bring too many family members, friends, and advocates to the > > hospital with you. Make up a roster and rotate shifts at your bedside . > > . . " (My motto goes on for a few more pages, but I suspect you get my > > drift.) [] > > > > It sounds as if you have had similarly dismal experiences. I hope your > > current PT is better than those you dealt with previously. Your > > situation is so especially complex -- anyone who deals with you should > > be taking the utmost care, not dismissing your concerns with generic > > reassurances. Have you considered quizzing this type of PT about his > > exact experience with flatback or flatback in combination with your hip > > situation? I know there must be " nice " ways to question someone on his > > clinical track record -- not that I am necessarily the most diplomatic > > questioner myself, given my background as an attorney who got an " A " in > > trial advocacy (a few short years before my flatback totally derailed my > > new legal career!). And not that any professional should take offense at > > being asked for some highlights of his curriculum vitae, so to speak. > > (I've said it before: Two of the many things I liked about Dr. Rand > > were his total unflappability and his straight, informative answers in > > response to my rigorous pre-op cross-examination.) Alas, some capable > > health professionals can be slightly prickly or defensive, especially > > earlier on in their careers. It is hard to know where to draw the line > > -- how much we should put up with from some of these harried health > > professionals, given the current frustrating and pressuresome managed > > care scene, etc. > > > > Thanks for your good wishes. > > > > Best, > > > > > Quote
Guest guest Posted May 27, 2006 Report Posted May 27, 2006 > > I wanted to commented on getting a heel lift. > > Does it make you wonder how much leg legnth disparities could have > contributed to all of our curve developments? I had thought of this theory when my daughter was diagnosed with scoliosis. WE both intoe. We have been checked and the legs are the same slength but one foot turns in. My daughter had oethopedic shoes and he scolliosis is not nealry as bad as mine was at her age. I can't help but think it is related. She was diagnosed at 6 and is now 9. By 9 I had been in a brace for at least a year. I could not find anything on it though when I looked further. Quote
Guest guest Posted May 28, 2006 Report Posted May 28, 2006 yes that is interesting but it also is interesting to me at least if scoliosis is connected with polio. My grandmother(dad's Mother) and her sister had polio and my gram has been dead for 20 years and her sister is 78 now and has always had some scoliosis. --- leominsterhsg <leominsterhsg@...> wrote: > > > > > I wanted to commented on getting a heel lift. > > > > Does it make you wonder how much leg legnth > disparities could have > > contributed to all of our curve developments? > > I had thought of this theory when my daughter was > diagnosed with > scoliosis. WE both intoe. We have been checked and > the legs are the > same slength but one foot turns in. My daughter had > oethopedic shoes > and he scolliosis is not nealry as bad as mine was > at her age. I can't > help but think it is related. She was diagnosed at 6 > and is now 9. By > 9 I had been in a brace for at least a year. I could > not find anything > on it though when I looked further. > > > > > > > > > > > Quote
Guest guest Posted May 29, 2006 Report Posted May 29, 2006 The same could be true for pelvic imbalances. really believe all of the parts of our bodies are interconnected. A structural problem with one can lead to all kinds of other problems. Unfortunately, once you've been fused, its impossible to try and treat the root cause, if there is one. > > > > I wanted to commented on getting a heel lift. > > > > Does it make you wonder how much leg legnth disparities could have > > contributed to all of our curve developments? > > I had thought of this theory when my daughter was diagnosed with > scoliosis. WE both intoe. We have been checked and the legs are the > same slength but one foot turns in. My daughter had oethopedic shoes > and he scolliosis is not nealry as bad as mine was at her age. I can't > help but think it is related. She was diagnosed at 6 and is now 9. By > 9 I had been in a brace for at least a year. I could not find anything > on it though when I looked further. > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 dear everyone, My mom and i were talking about the issues on fsf group and she said that when my parents were told of the diagnosis that 25 percent of people with scoliosis have heart problems, were any of you had heart problems that led to scoliosis. THEY THINK THAT MY HEART PUSHED MY BONES IN THE SPINE TO TURN THAT IS WHY (THEY THINK THAT MY LEFT BREAST STICKS OUT AND MY HIPS ARE UNEVEN --- " Jane S. " <jane434@...> wrote: > > The same could be true for pelvic imbalances. > really believe all of > the parts of our bodies are interconnected. A > structural problem > with one can lead to all kinds of other problems. > Unfortunately, > once you've been fused, its impossible to try and > treat the root > cause, if there is one. > > > > > > > > I wanted to commented on getting a heel lift. > > > > > > Does it make you wonder how much leg legnth > disparities could > have > > > contributed to all of our curve developments? > > > > I had thought of this theory when my daughter was > diagnosed with > > scoliosis. WE both intoe. We have been checked and > the legs are > the > > same slength but one foot turns in. My daughter > had oethopedic > shoes > > and he scolliosis is not nealry as bad as mine was > at her age. I > can't > > help but think it is related. She was diagnosed at > 6 and is now 9. > By > > 9 I had been in a brace for at least a year. I > could not find > anything > > on it though when I looked further. > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 My parents were told that my scoliosis could cause my lungs to collapse if it got alot worse. Could they have meant the reverse - that a curved spine could press on your heart, causing heart problems? > > > > > > > > I wanted to commented on getting a heel lift. > > > > > > > > Does it make you wonder how much leg legnth > > disparities could > > have > > > > contributed to all of our curve developments? > > > > > > I had thought of this theory when my daughter was > > diagnosed with > > > scoliosis. WE both intoe. We have been checked and > > the legs are > > the > > > same slength but one foot turns in. My daughter > > had oethopedic > > shoes > > > and he scolliosis is not nealry as bad as mine was > > at her age. I > > can't > > > help but think it is related. She was diagnosed at > > 6 and is now 9. > > By > > > 9 I had been in a brace for at least a year. I > > could not find > > anything > > > on it though when I looked further. > > > > > > > > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 The veins in the heart is made up of connective tissue, so are joints. People with Marfan Syndrome tend to have skeletal and aortic issues. I have mytral valve prolapse and have to be vidulant for aortic enlargement. I have never heard of someones heart causeing scoliosis but I have heard of things that cause both scoliosis and heart conditions. A variation of Ehlers-Danlos syndrome also comes to mind. My scoliosis was life threatening and was going to kill me if left untreated. It was interfering with my heart and lung function. Jolynn , Ellen Kear <ellen_kear@...> wrote: > > dear everyone, > > My mom and i were talking about the issues on fsf > group and she said that when my parents were told of > the diagnosis that 25 percent of people with scoliosis > have heart problems, were any of you had heart > problems that led to scoliosis. > THEY THINK THAT MY HEART PUSHED MY BONES IN THE SPINE > TO TURN > THAT IS WHY (THEY THINK THAT MY LEFT BREAST STICKS OUT > AND MY HIPS ARE UNEVEN > > --- " Jane S. " <jane434@...> wrote: > > > > > The same could be true for pelvic imbalances. > > really believe all of > > the parts of our bodies are interconnected. A > > structural problem > > with one can lead to all kinds of other problems. > > Unfortunately, > > once you've been fused, its impossible to try and > > treat the root > > cause, if there is one. > > > > > > > > > > > > I wanted to commented on getting a heel lift. > > > > > > > > Does it make you wonder how much leg legnth > > disparities could > > have > > > > contributed to all of our curve developments? > > > > > > I had thought of this theory when my daughter was > > diagnosed with > > > scoliosis. WE both intoe. We have been checked and > > the legs are > > the > > > same slength but one foot turns in. My daughter > > had oethopedic > > shoes > > > and he scolliosis is not nealry as bad as mine was > > at her age. I > > can't > > > help but think it is related. She was diagnosed at > > 6 and is now 9. > > By > > > 9 I had been in a brace for at least a year. I > > could not find > > anything > > > on it though when I looked further. > > > > > > > > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 I was told, that in time, my scoliosis would compromise my heart and lungs if I did not have surgery to stop the progression. I took that as heart and lung problems.. > > > > > > > > > > I wanted to commented on getting a heel lift. > > > > > > > > > > Does it make you wonder how much leg legnth > > > disparities could > > > have > > > > > contributed to all of our curve developments? > > > > > > > > I had thought of this theory when my daughter was > > > diagnosed with > > > > scoliosis. WE both intoe. We have been checked and > > > the legs are > > > the > > > > same slength but one foot turns in. My daughter > > > had oethopedic > > > shoes > > > > and he scolliosis is not nealry as bad as mine was > > > at her age. I > > > can't > > > > help but think it is related. She was diagnosed at > > > 6 and is now 9. > > > By > > > > 9 I had been in a brace for at least a year. I > > > could not find > > > anything > > > > on it though when I looked further. > > > > > > > > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 Dear Jane, it is possible, but highly doubtfull since my heart problem was diagnosed when I was 1 and my back was treated at age 8 and that is when my heart had gotten worse (i went every six months to see each doctor then. --- " Jane S. " <jane434@...> wrote: > My parents were told that my scoliosis could cause > my lungs to > collapse if it got alot worse. Could they have > meant the reverse - > that a curved spine could press on your heart, > causing heart > problems? > > > > > > > > > > > > I wanted to commented on getting a heel > lift. > > > > > > > > > > Does it make you wonder how much leg legnth > > > disparities could > > > have > > > > > contributed to all of our curve > developments? > > > > > > > > I had thought of this theory when my daughter > was > > > diagnosed with > > > > scoliosis. WE both intoe. We have been checked > and > > > the legs are > > > the > > > > same slength but one foot turns in. My > daughter > > > had oethopedic > > > shoes > > > > and he scolliosis is not nealry as bad as mine > was > > > at her age. I > > > can't > > > > help but think it is related. She was > diagnosed at > > > 6 and is now 9. > > > By > > > > 9 I had been in a brace for at least a year. I > > > could not find > > > anything > > > > on it though when I looked further. > > > > > > > > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted June 1, 2006 Report Posted June 1, 2006 Hi Jane S., I believe that severe (uncorrected) scoliosis curves can cause both pulmonary and cardiac problems. loriann > > > > > > > > > > I wanted to commented on getting a heel lift. > > > > > > > > > > Does it make you wonder how much leg legnth > > > disparities could > > > have > > > > > contributed to all of our curve developments? > > > > > > > > I had thought of this theory when my daughter was > > > diagnosed with > > > > scoliosis. WE both intoe. We have been checked and > > > the legs are > > > the > > > > same slength but one foot turns in. My daughter > > > had oethopedic > > > shoes > > > > and he scolliosis is not nealry as bad as mine was > > > at her age. I > > > can't > > > > help but think it is related. She was diagnosed at > > > 6 and is now 9. > > > By > > > > 9 I had been in a brace for at least a year. I > > > could not find > > > anything > > > > on it though when I looked further. > > > > > > > > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted June 1, 2006 Report Posted June 1, 2006 hey gues what i thought about getting dr. p to have a satalite meeting with all of us so maybe we could be hooked up with pics of all of us and have a doc, or few talk about it. --- <mrstrem@...> wrote: > I was told, that in time, my scoliosis would > compromise my heart and > lungs if I did not have surgery to stop the > progression. I took that > as heart and lung problems.. > > > > > > > > > > > > > > I wanted to commented on getting a heel > lift. > > > > > > > > > > > > Does it make you wonder how much leg > legnth > > > > disparities could > > > > have > > > > > > contributed to all of our curve > developments? > > > > > > > > > > I had thought of this theory when my > daughter was > > > > diagnosed with > > > > > scoliosis. WE both intoe. We have been > checked and > > > > the legs are > > > > the > > > > > same slength but one foot turns in. My > daughter > > > > had oethopedic > > > > shoes > > > > > and he scolliosis is not nealry as bad as > mine was > > > > at her age. I > > > > can't > > > > > help but think it is related. She was > diagnosed at > > > > 6 and is now 9. > > > > By > > > > > 9 I had been in a brace for at least a year. > I > > > > could not find > > > > anything > > > > > on it though when I looked further. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted June 1, 2006 Report Posted June 1, 2006 Hi Ellen, I may have missed a post. Who's Dr. P? And what would be the topic for discussion and format for a meeting? loriann > > hey gues what i thought about getting dr. p to have a > satalite meeting with all of us so maybe we could be > hooked up with pics of all of us and have a doc, or > few talk about it. > Quote
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