Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 I just thought I would add something to this conversation. I am I guess classed as an oldie as I had my surgery in 1966 in Toronto Ont I have two stainless steel rods the full lengeth of my back and I had the six months with the cast and the six months with the brace. My difference seems to be that I do not have pain and never have had, I do not flatback and dont expect to have. I have had one surgery and do not expect any more. I read all of the posts on here and have come to the realization that I do not belong here. I can still here my doctor many years ago saying to me--"you have scoliois it does not have you". I have come to realize that I am very lucky and have many friends who have had the same surgery and have no problems. I am one oldie who is very grateful for the life I have now after the surgery. This site has been interesting but like I said I do not belong here with all of you who ae having problems From: bethann0917 <bethann0917@...> Sent: Thu, February 17, 2011 3:38:37 PMSubject: Thanks to Carol Thanks, Carol, for the lovely, positive feedback! Occasionally over the years, questions have arisen as to the need for this wonderful site since SO much has changed since it's early beginnings. But while the treatments and surgical procedures for Scoliosis and Flatback Syndrome may have evolved (thank God!)there is still much to learn from it's history. And who better to educate the "newbies" than the "veterans"!!Diagnosis and treatment options have improved for all phases of this Orthopedic nightmare but the physical and emotional impacts of it, sadly, have not. There are still folks out there who remain as clueless and frightened as to what is happening to them as many of us once were. And sadly, there are still far too many so-called "Adult Scoliosis Specialists" and "Pain Management Specialists" who remain ignorant of the advances in these fields! I have much more respect for physicians/specialists who have the courage to admit, "I'm not sure what's happening to you or why! Let's do some research into this and see what we can come up with!" than the ones who rush to judgment and begin unnecessary and/or incorrect treatment plans! I admire physicians who encourage their patients and their families to do internet searches, ask questions, question treatments, etc. My Orthopedic surgeon, while not new to Flatback Syndrome and it's various treatment options, originally did for me, what was considered in 1998, to be a bold/unusual technique; he performed an anterior, laproscopic procedure of disc removals and inserted pedicle screws at L3,4,5,. NOT to correct the Flatback deformity but in the hopes that it would relieve some of my pain and neurological symptoms to give me the time I needed to prepare myself and my family for the much more invasive, extensive, posterior revision that he knew I'd eventually need but was not emotionally ready to commit to at that time. He told us it was a "stop-gap" measure not the "optimum, corrective surgical procedure" I would eventually need; but he instinctively recognized that I was understandably wary of what I was hearing because I had been misdiagnosed, under-treated, and in short, been put through a physical and emotional hell by multiple so-called Adult Scoliosis and Pain Mgmt "specialists" for the previous 4 1/2 years!!When I did finally consent to the posterior revision, I was physically and emotionally 110% ready to commit to whatever would be necessary to achieve the best outcome possible. My family and I had 110% FAITH IN HIM and the decisions that he made FOR US! It gave him the confidence to do a more aggressive procedure than he normally might have done to another patient because he knew he had my total commitment. That's why he took the chance of doing much more aggressive osteotomies to hopefully obtain a better final result...and it WORKED!! And while the more aggressive approach required me to once again be confined to bed for a few months(just to ensure that the pedicle screws would stay in their positions until the fusion mass could maintain the correction)and also required a far greater commitment by my husband and sons to care for me at home while I was recuperating, the final results were worth every sacrifice we had to made!!My surgeon was honest and straight-forward with all of us from the get-go. He NEVER promised that I would ever be totally pain free; he answered all our questions (sometimes again and again!)and explained things in ways we could ALL understand. I have a medical background and understood words, terms and phrases that went over my husband and sons' heads; they understand cars, motorcycles and mechanics! So when he answered their questions, he used visual aids (a movable spine model, screws, screwdriver, hammer, etc) and got to indulge in his "frustrated-mechanic/Orthopedic surgeon" side as well, using mechanical terms and phrases that made absolute sense to my guys!! And although the procedure itself took a bit longer than expected, he made sure that one of the residents and/or floating surgical nurses kept my family/friends informed throughout the long 11 1/2 hrs., and even accompanied them into the Neuro ICU post-op to prepare them for how bizarre/bloated I would look and be there to answer any further questions. Now THAT'S a CARING, DEDICATED SURGEON!!My Pain Mgmt specialist has been just as honest and forthcoming with my family and me. For the past 9+ yrs he has never rushed us through an appointment, answers our questions to the best of his ability and when he doesn't know an answer, admits it and will sit there and do internet searches until we're all satisfied...including him!! When he reads about new research/treatments specific to Flatback Syndrome and related Pain Mgmt.treatments, he'll e-mail me computer links or scan an article to me! I've been to hell and back in my quest to find the best physicians I could for my own Flatback and related problems.But my end results, the physicians who have and are currently treating me are among the GREATEST BLESSINGS IN MY LIFE!! If I can save just one person...one family...from even one MOMENT of some of the hell I've experienced, then the time Ive spent writing my posts for the Feisty site over the years...the good and the bad...will have been time well spent!! I've been the recipient of such invaluable info and advice from so many others on this site! I can still vividly remember the first time I found the , totally by accident. It was after my very 1st visit to my current Ortho surgeon and also the very 1st time I'd ever heard the term "Flatback Syndrome". I sat down at our 1st home PC, typed in the term in a search engine (these were pre-Google days, remember friends!!)and found this health site. We didn't have near as many members back then but I devoured every word over and over again...and bawled my eyes out!! I could not believe that I had found these amazing people who were suffering in the exact ways I was! Some had answers, many had questions, but ALL had this strange thing called Flatback Syndrome. I had found a home...a place of refuge and peace and friends.I still think of this site as my saving grace...always will...All my best,Beth > >> > Hi Feisty friends,> > > > Once again I must agree with on this one. Y'all probably think I have no opinions of my own but TRUST me...if you read back over some of my posts in the past 10 yrs (WOW! 10 yrs!!), you will see that I've often been "criticized" for my, oft' too vocal and long-winded opinions! But that's the beauty of this site...we ALL have an equal opportunity to weigh in on the issues we Feisties face day in and day out.> > > > Since I'm writing this on Super Bowl Sunday and I happen to live a mere 100 miles from Pittsburgh, PA. (GO STEELERS!!!) I hope our HARD WORKING moderators will allow a wee football reference...there is no 'standard play book' when dealing with Flatback Syndrome or Failed Spine Syndrome. Each patient is unique...each set of symptoms frustrating and often baffling, for the patient, for the physicians and surgeons and for the friends and families. So there is no such thing as S.O.P. (standard operating procedure) when it comes to revision surgeries. And anyone who tells you differently is, well...to put it nicely, uninformed. > > > > The evolution of surgical procedures for correction of scoliotic deformities is a case study in the history of Orthopedics, mechanics, carpentry, and high tech, computer technology. From the early days (I'm talking waaaay back to the 60's and 70's here folks) with weeks of pre-op traction, months of total bed rest in those horrendous Riser body casts and surgical stainless steel Harrington rod instrumentation, to surgical titanium pedicle screws, segmental instrumentation, Evoked Response Spinal Cord monitoring and out of bed within the first 24 hrs...look how far we've come, my friends!! > > > > Just as the surgical procedures have evolved, so have the opinions on what the "optimum outcome" of a revision surgery for Flatback Syndrome should be. Anyone who has watched or experienced first-hand the devastating physical and emotional effects of this "monster deformity" knows that it is a multi-faceted problem. There's the Orthopedic aspect...the often slow realization that we can't stand up straight no matter how much we try; or my favorite... the infamous (to US at least!!) penguin walk! Then there's the Medical aspect...the increasing pain, fatigue, inability to get a decent nights' sleep, etc. > > > > And last, but certainly not least, there's the emotional/mental aspect...and here's where I tend to hop on my soap box!! The realization that our lives at perhaps the quite young ages of 35 -45 are changing... and NOT for the better!!! Where are those "golden years" we've heard about??!! Personally, one of my BIGGEST complaints about Flatback Syndrome is, "Why the H-- did I go through laying in bed for 6 months when I was 16 yrs/o... when ALL my friends were starting to date and go to high school football games, going to dances and perhaps, getting their first kiss??!!" "Why did my parents & brother sacrifice SO much so that I could have the Harrington rod surgery??!!" Call it the "poor me's" but there you have it!I And I still get angry every time I think back to when my Flatback symptoms first reared their ugly heads in 1994. I went through months of appointments with local Orthopedic, Neuro docs, physical therapy, myelograms, CT's, intra-dural> > steroid injections...name it, I trudged through it, without ever being given a definitive diagnosis! All the while trying to work, be a wife and raise 2 young boys. It wasn't until we moved in 1996 to a bigger city, with a more progressive medical community, that I was even diagnosed!! By then, I had lost close to 3" in height, was in constant painand had irreversible neurological damage in my leg.> > > > Then there's the daily, intractable pain that physician after physician after physician contribute to either menopause or "empty nest syndrome" or one of my personal favorites, the "it's all in your head" diagnosis!! Trying to explain to friends and family that "2 Aleve DO NOT stop this pain!" Being looked upon as a "drug seeker" by medical personnel who may never have heard of scoliosis, let alone Flatback Syndrome. Being referred to as someone who "doctor shops" for pain meds and/or the dreaded "narcotics"!! Seriously people...when is the medical community going to wake up...perhaps READ an issue of the Journal of the American Medical Association (aka JAMA)... or info published by The American Pain Foundation or a Pain Mgmt specialist...or, God forbid, actually LISTEN to a patient??!! Oops...put the soap box away, Beth! > > > > And for as many symptoms that are associated with Flatback Syndrome, so, too, are there varied opinions as to what is the BEST approach to correct it. Every patient is UNIQUE. Every Orthopedic surgeon who treats patients with Flatback Syndrome has his or her opinion regarding the "anterior vs posterior vs the combo anterior/posterior" surgical approach. In my (very humble!) opinion that is perhaps the most important reason to get second (and even third!) opinions before committing to any type of revision procedure. And another reason why this site is such an invaluable source of info for anyone researching revision surgery. Over and over you read posts on the Feisty site about why it is so vitally important to seek opinions and/or treatment from QUALIFIED, Orthopedic surgeons who specialize in revision procedures! And why it's so necessary for your peace of mind to continually ask questions and not be satisfied until you get answers. > > > > Good thoughts go out to anyone struggling with making this huge, life-changing decision; and to everyone who's got an upcoming revision procedure. Keep us updated on your progress and don't hesitate to ask questions. One of my favorite sayings is "The only stupid questions are the ones you DON'T ask! > > > > All the best,> > Beth> > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 just curious to the lady who had her surgery done in toronto in 1966-who was ur surgeon? I too had mine done in toronto at sick kids. From: Durand <d.durand56@...>Subject: Re: Thanks to Carol Received: Monday, February 21, 2011, 1:39 PM I just thought I would add something to this conversation. I am I guess classed as an oldie as I had my surgery in 1966 in Toronto Ont I have two stainless steel rods the full lengeth of my back and I had the six months with the cast and the six months with the brace. My difference seems to be that I do not have pain and never have had, I do not flatback and dont expect to have. I have had one surgery and do not expect any more. I read all of the posts on here and have come to the realization that I do not belong here. I can still here my doctor many years ago saying to me--"you have scoliois it does not have you". I have come to realize that I am very lucky and have many friends who have had the same surgery and have no problems. I am one oldie who is very grateful for the life I have now after the surgery. This site has been interesting but like I said I do not belong here with all of you who ae having problems From: bethann0917 <bethann0917@...> Sent: Thu, February 17, 2011 3:38:37 PMSubject: Thanks to Carol Thanks, Carol, for the lovely, positive feedback! Occasionally over the years, questions have arisen as to the need for this wonderful site since SO much has changed since it's early beginnings. But while the treatments and surgical procedures for Scoliosis and Flatback Syndrome may have evolved (thank God!)there is still much to learn from it's history. And who better to educate the "newbies" than the "veterans"!!Diagnosis and treatment options have improved for all phases of this Orthopedic nightmare but the physical and emotional impacts of it, sadly, have not. There are still folks out there who remain as clueless and frightened as to what is happening to them as many of us once were. And sadly, there are still far too many so-called "Adult Scoliosis Specialists" and "Pain Management Specialists" who remain ignorant of the advances in these fields! I have much more respect for physicians/specialists who have the courage to admit, "I'm not sure what's happening to you or why! Let's do some research into this and see what we can come up with!" than the ones who rush to judgment and begin unnecessary and/or incorrect treatment plans! I admire physicians who encourage their patients and their families to do internet searches, ask questions, question treatments, etc. My Orthopedic surgeon, while not new to Flatback Syndrome and it's various treatment options, originally did for me, what was considered in 1998, to be a bold/unusual technique; he performed an anterior, laproscopic procedure of disc removals and inserted pedicle screws at L3,4,5,. NOT to correct the Flatback deformity but in the hopes that it would relieve some of my pain and neurological symptoms to give me the time I needed to prepare myself and my family for the much more invasive, extensive, posterior revision that he knew I'd eventually need but was not emotionally ready to commit to at that time. He told us it was a "stop-gap" measure not the "optimum, corrective surgical procedure" I would eventually need; but he instinctively recognized that I was understandably wary of what I was hearing because I had been misdiagnosed, under-treated, and in short, been put through a physical and emotional hell by multiple so-called Adult Scoliosis and Pain Mgmt "specialists" for the previous 4 1/2 years!!When I did finally consent to the posterior revision, I was physically and emotionally 110% ready to commit to whatever would be necessary to achieve the best outcome possible. My family and I had 110% FAITH IN HIM and the decisions that he made FOR US! It gave him the confidence to do a more aggressive procedure than he normally might have done to another patient because he knew he had my total commitment. That's why he took the chance of doing much more aggressive osteotomies to hopefully obtain a better final result...and it WORKED!! And while the more aggressive approach required me to once again be confined to bed for a few months(just to ensure that the pedicle screws would stay in their positions until the fusion mass could maintain the correction)and also required a far greater commitment by my husband and sons to care for me at home while I was recuperating, the final results were worth every sacrifice we had to made!!My surgeon was honest and straight-forward with all of us from the get-go. He NEVER promised that I would ever be totally pain free; he answered all our questions (sometimes again and again!)and explained things in ways we could ALL understand. I have a medical background and understood words, terms and phrases that went over my husband and sons' heads; they understand cars, motorcycles and mechanics! So when he answered their questions, he used visual aids (a movable spine model, screws, screwdriver, hammer, etc) and got to indulge in his "frustrated-mechanic/Orthopedic surgeon" side as well, using mechanical terms and phrases that made absolute sense to my guys!! And although the procedure itself took a bit longer than expected, he made sure that one of the residents and/or floating surgical nurses kept my family/friends informed throughout the long 11 1/2 hrs., and even accompanied them into the Neuro ICU post-op to prepare them for how bizarre/bloated I would look and be there to answer any further questions. Now THAT'S a CARING, DEDICATED SURGEON!!My Pain Mgmt specialist has been just as honest and forthcoming with my family and me. For the past 9+ yrs he has never rushed us through an appointment, answers our questions to the best of his ability and when he doesn't know an answer, admits it and will sit there and do internet searches until we're all satisfied...including him!! When he reads about new research/treatments specific to Flatback Syndrome and related Pain Mgmt.treatments, he'll e-mail me computer links or scan an article to me! I've been to hell and back in my quest to find the best physicians I could for my own Flatback and related problems.But my end results, the physicians who have and are currently treating me are among the GREATEST BLESSINGS IN MY LIFE!! If I can save just one person...one family...from even one MOMENT of some of the hell I've experienced, then the time Ive spent writing my posts for the Feisty site over the years...the good and the bad...will have been time well spent!! I've been the recipient of such invaluable info and advice from so many others on this site! I can still vividly remember the first time I found the , totally by accident. It was after my very 1st visit to my current Ortho surgeon and also the very 1st time I'd ever heard the term "Flatback Syndrome". I sat down at our 1st home PC, typed in the term in a search engine (these were pre-Google days, remember friends!!)and found this health site. We didn't have near as many members back then but I devoured every word over and over again...and bawled my eyes out!! I could not believe that I had found these amazing people who were suffering in the exact ways I was! Some had answers, many had questions, but ALL had this strange thing called Flatback Syndrome. I had found a home...a place of refuge and peace and friends.I still think of this site as my saving grace...always will...All my best,Beth > >> > Hi Feisty friends,> > > > Once again I must agree with on this one. Y'all probably think I have no opinions of my own but TRUST me...if you read back over some of my posts in the past 10 yrs (WOW! 10 yrs!!), you will see that I've often been "criticized" for my, oft' too vocal and long-winded opinions! But that's the beauty of this site...we ALL have an equal opportunity to weigh in on the issues we Feisties face day in and day out.> > > > Since I'm writing this on Super Bowl Sunday and I happen to live a mere 100 miles from Pittsburgh, PA. (GO STEELERS!!!) I hope our HARD WORKING moderators will allow a wee football reference...there is no 'standard play book' when dealing with Flatback Syndrome or Failed Spine Syndrome. Each patient is unique...each set of symptoms frustrating and often baffling, for the patient, for the physicians and surgeons and for the friends and families. So there is no such thing as S.O.P. (standard operating procedure) when it comes to revision surgeries. And anyone who tells you differently is, well...to put it nicely, uninformed. > > > > The evolution of surgical procedures for correction of scoliotic deformities is a case study in the history of Orthopedics, mechanics, carpentry, and high tech, computer technology. From the early days (I'm talking waaaay back to the 60's and 70's here folks) with weeks of pre-op traction, months of total bed rest in those horrendous Riser body casts and surgical stainless steel Harrington rod instrumentation, to surgical titanium pedicle screws, segmental instrumentation, Evoked Response Spinal Cord monitoring and out of bed within the first 24 hrs...look how far we've come, my friends!! > > > > Just as the surgical procedures have evolved, so have the opinions on what the "optimum outcome" of a revision surgery for Flatback Syndrome should be. Anyone who has watched or experienced first-hand the devastating physical and emotional effects of this "monster deformity" knows that it is a multi-faceted problem. There's the Orthopedic aspect...the often slow realization that we can't stand up straight no matter how much we try; or my favorite... the infamous (to US at least!!) penguin walk! Then there's the Medical aspect...the increasing pain, fatigue, inability to get a decent nights' sleep, etc. > > > > And last, but certainly not least, there's the emotional/mental aspect...and here's where I tend to hop on my soap box!! The realization that our lives at perhaps the quite young ages of 35 -45 are changing... and NOT for the better!!! Where are those "golden years" we've heard about??!! Personally, one of my BIGGEST complaints about Flatback Syndrome is, "Why the H-- did I go through laying in bed for 6 months when I was 16 yrs/o... when ALL my friends were starting to date and go to high school football games, going to dances and perhaps, getting their first kiss??!!" "Why did my parents & brother sacrifice SO much so that I could have the Harrington rod surgery??!!" Call it the "poor me's" but there you have it!I And I still get angry every time I think back to when my Flatback symptoms first reared their ugly heads in 1994. I went through months of appointments with local Orthopedic, Neuro docs, physical therapy, myelograms, CT's, intra-dural> > steroid injections...name it, I trudged through it, without ever being given a definitive diagnosis! All the while trying to work, be a wife and raise 2 young boys. It wasn't until we moved in 1996 to a bigger city, with a more progressive medical community, that I was even diagnosed!! By then, I had lost close to 3" in height, was in constant painand had irreversible neurological damage in my leg.> > > > Then there's the daily, intractable pain that physician after physician after physician contribute to either menopause or "empty nest syndrome" or one of my personal favorites, the "it's all in your head" diagnosis!! Trying to explain to friends and family that "2 Aleve DO NOT stop this pain!" Being looked upon as a "drug seeker" by medical personnel who may never have heard of scoliosis, let alone Flatback Syndrome. Being referred to as someone who "doctor shops" for pain meds and/or the dreaded "narcotics"!! Seriously people...when is the medical community going to wake up...perhaps READ an issue of the Journal of the American Medical Association (aka JAMA)... or info published by The American Pain Foundation or a Pain Mgmt specialist...or, God forbid, actually LISTEN to a patient??!! Oops...put the soap box away, Beth! > > > > And for as many symptoms that are associated with Flatback Syndrome, so, too, are there varied opinions as to what is the BEST approach to correct it. Every patient is UNIQUE. Every Orthopedic surgeon who treats patients with Flatback Syndrome has his or her opinion regarding the "anterior vs posterior vs the combo anterior/posterior" surgical approach. In my (very humble!) opinion that is perhaps the most important reason to get second (and even third!) opinions before committing to any type of revision procedure. And another reason why this site is such an invaluable source of info for anyone researching revision surgery. Over and over you read posts on the Feisty site about why it is so vitally important to seek opinions and/or treatment from QUALIFIED, Orthopedic surgeons who specialize in revision procedures! And why it's so necessary for your peace of mind to continually ask questions and not be satisfied until you get answers. > > > > Good thoughts go out to anyone struggling with making this huge, life-changing decision; and to everyone who's got an upcoming revision procedure. Keep us updated on your progress and don't hesitate to ask questions. One of my favorite sayings is "The only stupid questions are the ones you DON'T ask! > > > > All the best,> > Beth> > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 Dr Hall was my surgeon and I had just turned 16 so I had my surgery at Orthoapedic and arthritic hospital on wellseley st in Toronto From: Izarah Star <izarahstar@...> Sent: Mon, February 21, 2011 4:03:18 PMSubject: Re: Thanks to Carol just curious to the lady who had her surgery done in toronto in 1966-who was ur surgeon? I too had mine done in toronto at sick kids. From: Durand <d.durand56@...>Subject: Re: Thanks to Carol Received: Monday, February 21, 2011, 1:39 PM I just thought I would add something to this conversation. I am I guess classed as an oldie as I had my surgery in 1966 in Toronto Ont I have two stainless steel rods the full lengeth of my back and I had the six months with the cast and the six months with the brace. My difference seems to be that I do not have pain and never have had, I do not flatback and dont expect to have. I have had one surgery and do not expect any more. I read all of the posts on here and have come to the realization that I do not belong here. I can still here my doctor many years ago saying to me--"you have scoliois it does not have you". I have come to realize that I am very lucky and have many friends who have had the same surgery and have no problems. I am one oldie who is very grateful for the life I have now after the surgery. This site has been interesting but like I said I do not belong here with all of you who ae having problems From: bethann0917 <bethann0917@...> Sent: Thu, February 17, 2011 3:38:37 PMSubject: Thanks to Carol Thanks, Carol, for the lovely, positive feedback! Occasionally over the years, questions have arisen as to the need for this wonderful site since SO much has changed since it's early beginnings. But while the treatments and surgical procedures for Scoliosis and Flatback Syndrome may have evolved (thank God!)there is still much to learn from it's history. And who better to educate the "newbies" than the "veterans"!!Diagnosis and treatment options have improved for all phases of this Orthopedic nightmare but the physical and emotional impacts of it, sadly, have not. There are still folks out there who remain as clueless and frightened as to what is happening to them as many of us once were. And sadly, there are still far too many so-called "Adult Scoliosis Specialists" and "Pain Management Specialists" who remain ignorant of the advances in these fields! I have much more respect for physicians/specialists who have the courage to admit, "I'm not sure what's happening to you or why! Let's do some research into this and see what we can come up with!" than the ones who rush to judgment and begin unnecessary and/or incorrect treatment plans! I admire physicians who encourage their patients and their families to do internet searches, ask questions, question treatments, etc. My Orthopedic surgeon, while not new to Flatback Syndrome and it's various treatment options, originally did for me, what was considered in 1998, to be a bold/unusual technique; he performed an anterior, laproscopic procedure of disc removals and inserted pedicle screws at L3,4,5,. NOT to correct the Flatback deformity but in the hopes that it would relieve some of my pain and neurological symptoms to give me the time I needed to prepare myself and my family for the much more invasive, extensive, posterior revision that he knew I'd eventually need but was not emotionally ready to commit to at that time. He told us it was a "stop-gap" measure not the "optimum, corrective surgical procedure" I would eventually need; but he instinctively recognized that I was understandably wary of what I was hearing because I had been misdiagnosed, under-treated, and in short, been put through a physical and emotional hell by multiple so-called Adult Scoliosis and Pain Mgmt "specialists" for the previous 4 1/2 years!!When I did finally consent to the posterior revision, I was physically and emotionally 110% ready to commit to whatever would be necessary to achieve the best outcome possible. My family and I had 110% FAITH IN HIM and the decisions that he made FOR US! It gave him the confidence to do a more aggressive procedure than he normally might have done to another patient because he knew he had my total commitment. That's why he took the chance of doing much more aggressive osteotomies to hopefully obtain a better final result...and it WORKED!! And while the more aggressive approach required me to once again be confined to bed for a few months(just to ensure that the pedicle screws would stay in their positions until the fusion mass could maintain the correction)and also required a far greater commitment by my husband and sons to care for me at home while I was recuperating, the final results were worth every sacrifice we had to made!!My surgeon was honest and straight-forward with all of us from the get-go. He NEVER promised that I would ever be totally pain free; he answered all our questions (sometimes again and again!)and explained things in ways we could ALL understand. I have a medical background and understood words, terms and phrases that went over my husband and sons' heads; they understand cars, motorcycles and mechanics! So when he answered their questions, he used visual aids (a movable spine model, screws, screwdriver, hammer, etc) and got to indulge in his "frustrated-mechanic/Orthopedic surgeon" side as well, using mechanical terms and phrases that made absolute sense to my guys!! And although the procedure itself took a bit longer than expected, he made sure that one of the residents and/or floating surgical nurses kept my family/friends informed throughout the long 11 1/2 hrs., and even accompanied them into the Neuro ICU post-op to prepare them for how bizarre/bloated I would look and be there to answer any further questions. Now THAT'S a CARING, DEDICATED SURGEON!!My Pain Mgmt specialist has been just as honest and forthcoming with my family and me. For the past 9+ yrs he has never rushed us through an appointment, answers our questions to the best of his ability and when he doesn't know an answer, admits it and will sit there and do internet searches until we're all satisfied...including him!! When he reads about new research/treatments specific to Flatback Syndrome and related Pain Mgmt.treatments, he'll e-mail me computer links or scan an article to me! I've been to hell and back in my quest to find the best physicians I could for my own Flatback and related problems.But my end results, the physicians who have and are currently treating me are among the GREATEST BLESSINGS IN MY LIFE!! If I can save just one person...one family...from even one MOMENT of some of the hell I've experienced, then the time Ive spent writing my posts for the Feisty site over the years...the good and the bad...will have been time well spent!! I've been the recipient of such invaluable info and advice from so many others on this site! I can still vividly remember the first time I found the , totally by accident. It was after my very 1st visit to my current Ortho surgeon and also the very 1st time I'd ever heard the term "Flatback Syndrome". I sat down at our 1st home PC, typed in the term in a search engine (these were pre-Google days, remember friends!!)and found this health site. We didn't have near as many members back then but I devoured every word over and over again...and bawled my eyes out!! I could not believe that I had found these amazing people who were suffering in the exact ways I was! Some had answers, many had questions, but ALL had this strange thing called Flatback Syndrome. I had found a home...a place of refuge and peace and friends.I still think of this site as my saving grace...always will...All my best,Beth > >> > Hi Feisty friends,> > > > Once again I must agree with on this one. Y'all probably think I have no opinions of my own but TRUST me...if you read back over some of my posts in the past 10 yrs (WOW! 10 yrs!!), you will see that I've often been "criticized" for my, oft' too vocal and long-winded opinions! But that's the beauty of this site...we ALL have an equal opportunity to weigh in on the issues we Feisties face day in and day out.> > > > Since I'm writing this on Super Bowl Sunday and I happen to live a mere 100 miles from Pittsburgh, PA. (GO STEELERS!!!) I hope our HARD WORKING moderators will allow a wee football reference...there is no 'standard play book' when dealing with Flatback Syndrome or Failed Spine Syndrome. Each patient is unique...each set of symptoms frustrating and often baffling, for the patient, for the physicians and surgeons and for the friends and families. So there is no such thing as S.O.P. (standard operating procedure) when it comes to revision surgeries. And anyone who tells you differently is, well...to put it nicely, uninformed. > > > > The evolution of surgical procedures for correction of scoliotic deformities is a case study in the history of Orthopedics, mechanics, carpentry, and high tech, computer technology. From the early days (I'm talking waaaay back to the 60's and 70's here folks) with weeks of pre-op traction, months of total bed rest in those horrendous Riser body casts and surgical stainless steel Harrington rod instrumentation, to surgical titanium pedicle screws, segmental instrumentation, Evoked Response Spinal Cord monitoring and out of bed within the first 24 hrs...look how far we've come, my friends!! > > > > Just as the surgical procedures have evolved, so have the opinions on what the "optimum outcome" of a revision surgery for Flatback Syndrome should be. Anyone who has watched or experienced first-hand the devastating physical and emotional effects of this "monster deformity" knows that it is a multi-faceted problem. There's the Orthopedic aspect...the often slow realization that we can't stand up straight no matter how much we try; or my favorite... the infamous (to US at least!!) penguin walk! Then there's the Medical aspect...the increasing pain, fatigue, inability to get a decent nights' sleep, etc. > > > > And last, but certainly not least, there's the emotional/mental aspect...and here's where I tend to hop on my soap box!! The realization that our lives at perhaps the quite young ages of 35 -45 are changing... and NOT for the better!!! Where are those "golden years" we've heard about??!! Personally, one of my BIGGEST complaints about Flatback Syndrome is, "Why the H-- did I go through laying in bed for 6 months when I was 16 yrs/o... when ALL my friends were starting to date and go to high school football games, going to dances and perhaps, getting their first kiss??!!" "Why did my parents & brother sacrifice SO much so that I could have the Harrington rod surgery??!!" Call it the "poor me's" but there you have it!I And I still get angry every time I think back to when my Flatback symptoms first reared their ugly heads in 1994. I went through months of appointments with local Orthopedic, Neuro docs, physical therapy, myelograms, CT's, intra-dural> > steroid injections...name it, I trudged through it, without ever being given a definitive diagnosis! All the while trying to work, be a wife and raise 2 young boys. It wasn't until we moved in 1996 to a bigger city, with a more progressive medical community, that I was even diagnosed!! By then, I had lost close to 3" in height, was in constant painand had irreversible neurological damage in my leg.> > > > Then there's the daily, intractable pain that physician after physician after physician contribute to either menopause or "empty nest syndrome" or one of my personal favorites, the "it's all in your head" diagnosis!! Trying to explain to friends and family that "2 Aleve DO NOT stop this pain!" Being looked upon as a "drug seeker" by medical personnel who may never have heard of scoliosis, let alone Flatback Syndrome. Being referred to as someone who "doctor shops" for pain meds and/or the dreaded "narcotics"!! Seriously people...when is the medical community going to wake up...perhaps READ an issue of the Journal of the American Medical Association (aka JAMA)... or info published by The American Pain Foundation or a Pain Mgmt specialist...or, God forbid, actually LISTEN to a patient??!! Oops...put the soap box away, Beth! > > > > And for as many symptoms that are associated with Flatback Syndrome, so, too, are there varied opinions as to what is the BEST approach to correct it. Every patient is UNIQUE. Every Orthopedic surgeon who treats patients with Flatback Syndrome has his or her opinion regarding the "anterior vs posterior vs the combo anterior/posterior" surgical approach. In my (very humble!) opinion that is perhaps the most important reason to get second (and even third!) opinions before committing to any type of revision procedure. And another reason why this site is such an invaluable source of info for anyone researching revision surgery. Over and over you read posts on the Feisty site about why it is so vitally important to seek opinions and/or treatment from QUALIFIED, Orthopedic surgeons who specialize in revision procedures! And why it's so necessary for your peace of mind to continually ask questions and not be satisfied until you get answers. > > > > Good thoughts go out to anyone struggling with making this huge, life-changing decision; and to everyone who's got an upcoming revision procedure. Keep us updated on your progress and don't hesitate to ask questions. One of my favorite sayings is "The only stupid questions are the ones you DON'T ask! > > > > All the best,> > Beth> > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Is this the same Dr. Hall who was @ Children's Hospital in Boston in 1978? That's who did my first back surgery then with Harrington rod. Sent from my Samsung Epic™ 4G Durand <d.durand56@...> wrote: >Dr Hall was my surgeon and I had just turned 16 so I had my surgery at >Orthoapedic and arthritic hospital on wellseley st in Toronto > > > > >________________________________ >From: Izarah Star <izarahstar@...> > >Sent: Mon, February 21, 2011 4:03:18 PM >Subject: Re: Thanks to Carol > > >just curious to the lady who had her surgery done in toronto in 1966-who was ur >surgeon? I too had mine done in toronto at sick kids. > > > > > > > >>From: Durand <d.durand56@...> >>Subject: Re: Thanks to Carol >> >>Received: Monday, February 21, 2011, 1:39 PM >> >> >> >>I just thought I would add something to this conversation. I am I guess classed >>as an oldie as I had my surgery in 1966 in Toronto Ont I have two stainless >>steel rods the full lengeth of my back and I had the six months with the cast >>and the six months with the brace. My difference seems to be that I do not have >>pain and never have had, I do not flatback and dont expect to have. I have had >>one surgery and do not expect any more. I read all of the posts on here and >>have come to the realization that I do not belong here. I can still here my >>doctor many years ago saying to me-- " you have scoliois it does not have you " . I >>have come to realize that I am very lucky and have many friends who have had the >>same surgery and have no problems.  I am one oldie who is very grateful for the >>life I have now after the surgery.   This site has been interesting but like I >>said I do not belong here with all of you who ae having problems >> >> >> >> >________________________________ >From: bethann0917 <bethann0917@...> >> >>Sent: Thu, February 17, 2011 3:38:37 PM >>Subject: Thanks to Carol >> >> >>Thanks, Carol, for the lovely, positive feedback! Occasionally over the years, >>questions have arisen as to the need for this wonderful site since SO much has >>changed since it's early beginnings. But while the treatments and surgical >>procedures for Scoliosis and Flatback Syndrome may have evolved (thank >>God!)there is still much to learn from it's history. And who better to educate >>the " newbies " than the " veterans " !! >> >>Diagnosis and treatment options have improved for all phases of this Orthopedic >>nightmare but the physical and emotional impacts of it, sadly, have not. There >>are still folks out there who remain as clueless and frightened as to what is >>happening to them as many of us once were. And sadly, there are still far too >>many so-called " Adult Scoliosis Specialists " and " Pain Management Specialists " >>who remain ignorant of the advances in these fields! I have much more respect >>for physicians/specialists who have the courage to admit, " I'm not sure what's >>happening to you or why! Let's do some research into this and see what we can >>come up with! " than the ones who rush to judgment and begin unnecessary and/or >>incorrect treatment plans! >> >> >>I admire physicians who encourage their patients and their families to do >>internet searches, ask questions, question treatments, etc. My Orthopedic >>surgeon, while not new to Flatback Syndrome and it's various treatment options, >>originally did for me, what was considered in 1998, to be a bold/unusual >>technique; he performed an anterior, laproscopic procedure of disc removals and >>inserted pedicle screws at L3,4,5,. NOT to correct the Flatback deformity but in >>the hopes that it would relieve some of my pain and neurological symptoms to >>give me the time I needed to prepare myself and my family for the much more >>invasive, extensive, posterior revision that he knew I'd eventually need but was >>not emotionally ready to commit to at that time. He told us it was a " stop-gap " >>measure not the " optimum, corrective surgical procedure " I would eventually >>need; but he instinctively recognized that I was understandably wary of what I >>was hearing because I had been misdiagnosed, under-treated, and in short, been >>put through a physical and emotional hell by multiple so-called Adult Scoliosis >>and Pain Mgmt " specialists " for the previous 4 1/2 years!! >> >>When I did finally consent to the posterior revision, I was physically and >>emotionally 110% ready to commit to whatever would be necessary to achieve the >>best outcome possible. My family and I had 110% FAITH IN HIM and the decisions >>that he made FOR US! It gave him the confidence to do a more aggressive >>procedure than he normally might have done to another patient because he knew he >>had my total commitment. That's why he took the chance of doing much more >>aggressive osteotomies to hopefully obtain a better final result...and it >>WORKED!! And while the more aggressive approach required me to once again be >>confined to bed for a few months(just to ensure that the pedicle screws would >>stay in their positions until the fusion mass could maintain the correction)and >>also required a far greater commitment by my husband and sons to care for me at >>home while I was recuperating, the final results were worth every sacrifice we >>had to made!! >> >>My surgeon was honest and straight-forward with all of us from the get-go. He >>NEVER promised that I would ever be totally pain free; he answered all our >>questions (sometimes again and again!)and explained things in ways we could ALL >>understand. I have a medical background and understood words, terms and phrases >>that went over my husband and sons' heads; they understand cars, motorcycles and >>mechanics! So when he answered their questions, he used visual aids (a movable >>spine model, screws, screwdriver, hammer, etc) and got to indulge in his >> " frustrated-mechanic/Orthopedic surgeon " side as well, using mechanical terms >>and phrases that made absolute sense to my guys!! And although the procedure >>itself took a bit longer than expected, he made sure that one of the residents >>and/or floating surgical nurses kept my family/friends informed throughout the >>long 11 1/2 hrs., and even accompanied them into the Neuro ICU post-op to >>prepare them for how bizarre/bloated I would look and be there to answer any >>further questions. Now THAT'S a CARING, DEDICATED SURGEON!! >> >>My Pain Mgmt specialist has been just as honest and forthcoming with my family >>and me. For the past 9+ yrs he has never rushed us through an appointment, >>answers our questions to the best of his ability and when he doesn't know an >>answer, admits it and will sit there and do internet searches until we're all >>satisfied...including him!! When he reads about new research/treatments specific >>to Flatback Syndrome and related Pain Mgmt.treatments, he'll e-mail me computer >>links or scan an article to me! >> >> >>I've been to hell and back in my quest to find the best physicians I could for >>my own Flatback and related problems.But my end results, the physicians who have >>and are currently treating me are among the GREATEST BLESSINGS IN MY LIFE!! If I >>can save just one person...one family...from even one MOMENT of some of the hell >>I've experienced, then the time Ive spent writing my posts for the Feisty site >>over the years...the good and the bad...will have been time well spent!! I've >>been the recipient of such invaluable info and advice from so many others on >>this site! >> >> >>I can still vividly remember the first time I found the , >>totally by accident. It was after my very 1st visit to my current Ortho surgeon >>and also the very 1st time I'd ever heard the term " Flatback Syndrome " . I sat >>down at our 1st home PC, typed in the term in a search engine (these were >>pre-Google days, remember friends!!)and found this health site. We >>didn't have near as many members back then but I devoured every word over and >>over again...and bawled my eyes out!! I could not believe that I had found these >>amazing people who were suffering in the exact ways I was! Some had answers, >>many had questions, but ALL had this strange thing called Flatback Syndrome. I >>had found a home...a place of refuge and peace and friends. >> >>I still think of this site as my saving grace...always will... >> >>All my best, >>Beth >> >> >>> > >>> > Hi Feisty friends, >>> > >>> > Once again I must agree with on this one. Y'all probably think I >>>have no opinions of my own but TRUST me...if you read back over some of my posts >>>in the past 10 yrs (WOW! 10 yrs!!), you will see that I've often been >>> " criticized " for my, oft' too vocal and long-winded opinions! But that's the >>>beauty of this site...we ALL have an equal opportunity to weigh in on the issues >>>we Feisties face day in and day out. >>> > >>> > Since I'm writing this on Super Bowl Sunday and I happen to live a mere 100 >>>miles from Pittsburgh, PA. (GO STEELERS!!!) I hope our HARD WORKING moderators >>>will allow a wee football reference...there is no 'standard play book' when >>>dealing with Flatback Syndrome or Failed Spine Syndrome. Each patient is >>>unique...each set of symptoms frustrating and often baffling, for the patient, >>>for the physicians and surgeons and for the friends and families. So there is no >>>such thing as S.O.P. (standard operating procedure) when it comes to revision >>>surgeries. And anyone who tells you differently is, well...to put it nicely, >>>uninformed. >>> >>> > >>> > The evolution of surgical procedures for correction of scoliotic deformities >>>is a case study in the history of Orthopedics, mechanics, carpentry, and high >>>tech, computer technology. From the early days (I'm talking waaaay back to the >>>60's and 70's here folks) with weeks of pre-op traction, months of total bed >>>rest in those horrendous Riser body casts and surgical stainless steel >>>Harrington rod instrumentation, to surgical titanium pedicle screws, segmental >>>instrumentation, Evoked Response Spinal Cord monitoring and out of bed within >>>the first 24 hrs...look how far we've come, my friends!! >>> >>> > >>> > Just as the surgical procedures have evolved, so have the opinions on what >>>the " optimum outcome " of a revision surgery for Flatback Syndrome should be. >>>Anyone who has watched or experienced first-hand the devastating physical and >>>emotional effects of this " monster deformity " knows that it is a multi-faceted >>>problem. There's the Orthopedic aspect...the often slow realization that we >>>can't stand up straight no matter how much we try; or my favorite... the >>>infamous (to US at least!!) penguin walk! Then there's the Medical aspect...the >>>increasing pain, fatigue, inability to get a decent nights' sleep, etc. >>> >>> > >>> > And last, but certainly not least, there's the emotional/mental aspect...and >>>here's where I tend to hop on my soap box!! The realization that our lives at >>>perhaps the quite young ages of 35 -45 are changing... and NOT for the better!!! >>>Where are those " golden years " we've heard about??!! Personally, one of my >>>BIGGEST complaints about Flatback Syndrome is, " Why the H-- did I go through >>>laying in bed for 6 months when I was 16 yrs/o... when ALL my friends were >>>starting to date and go to high school football games, going to dances and >>>perhaps, getting their first kiss??!! " " Why did my parents & brother sacrifice >>>SO much so that I could have the Harrington rod surgery??!! " Call it the " poor >>>me's " but there you have it!I And I still get angry every time I think back to >>>when my Flatback symptoms first reared their ugly heads in 1994. I went through >>>months of appointments with local Orthopedic, Neuro docs, physical therapy, >>>myelograms, CT's, intra-dural >>> > steroid injections...name it, I trudged through it, without ever being given >>>a definitive diagnosis! All the while trying to work, be a wife and raise 2 >>>young boys. It wasn't until we moved in 1996 to a bigger city, with a more >>>progressive medical community, that I was even diagnosed!! By then, I had lost >>>close to 3 " in height, was in constant painand had irreversible neurological >>>damage in my leg. >>> > >>> > Then there's the daily, intractable pain that physician after physician after >>>physician contribute to either menopause or " empty nest syndrome " or one of my >>>personal favorites, the " it's all in your head " diagnosis!! Trying to explain to >>>friends and family that " 2 Aleve DO NOT stop this pain! " Being looked upon as a >>> " drug seeker " by medical personnel who may never have heard of scoliosis, let >>>alone Flatback Syndrome. Being referred to as someone who " doctor shops " for >>>pain meds and/or the dreaded " narcotics " !! Seriously people...when is the >>>medical community going to wake up...perhaps READ an issue of the Journal of >>>the American Medical Association (aka JAMA)... or info published by The American >>>Pain Foundation or a Pain Mgmt specialist...or, God forbid, actually LISTEN to >>>a patient??!! Oops...put the soap box away, Beth! >>> >>> > >>> > And for as many symptoms that are associated with Flatback Syndrome, so, too, >>>are there varied opinions as to what is the BEST approach to correct it. Every >>>patient is UNIQUE. Every Orthopedic surgeon who treats patients with Flatback >>>Syndrome has his or her opinion regarding the " anterior vs posterior vs the >>>combo anterior/posterior " surgical approach. In my (very humble!) opinion that >>>is perhaps the most important reason to get second (and even third!) opinions >>>before committing to any type of revision procedure. And another reason why this >>>site is such an invaluable source of info for anyone researching revision >>>surgery. Over and over you read posts on the Feisty site about why it is so >>>vitally important to seek opinions and/or treatment from QUALIFIED, Orthopedic >>>surgeons who specialize in revision procedures! And why it's so necessary for >>>your peace of mind to continually ask questions and not be satisfied until you >>>get answers. >>> >>> > >>> > Good thoughts go out to anyone struggling with making this huge, >>>life-changing decision; and to everyone who's got an upcoming revision >>>procedure. Keep us updated on your progress and don't hesitate to ask questions. >>>One of my favorite sayings is " The only stupid questions are the ones you DON'T >>>ask! >>> >>> > >>> > All the best, >>> > Beth >>> > >>> > >>> > >>> >  >>> > >>> >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 it could be I know he left Toronto and went to the States then on to India From: Jodi L. Gerber <jlg267@...> Sent: Thu, February 24, 2011 8:46:05 AMSubject: Re: Thanks to Carol Is this the same Dr. Hall who was @ Children's Hospital in Boston in 1978? That's who did my first back surgery then with Harrington rod.Sent from my Samsung Epicâ„¢ 4G Durand <d.durand56@...> wrote:>Dr Hall was my surgeon and I had just turned 16 so I had my surgery at >Orthoapedic and arthritic hospital on wellseley st in Toronto>>>>>________________________________>From: Izarah Star <izarahstar@...>> >Sent: Mon, February 21, 2011 4:03:18 PM>Subject: Re: Thanks to Carol>> >just curious to the lady who had her surgery done in toronto in 1966-who was ur >surgeon? I too had mine done in toronto at sick kids.>>> >>>>>>From: Durand <d.durand56@...>>>Subject: Re: Thanks to Carol>> >>Received: Monday, February 21, 2011, 1:39 PM>>>>>> >>I just thought I would add something to this conversation. I am I guess classed >>as an oldie as I had my surgery in 1966 in Toronto Ont I have two stainless >>steel rods the full lengeth of my back and I had the six months with the cast >>and the six months with the brace. My difference seems to be that I do not have >>pain and never have had, I do not flatback and dont expect to have. I have had >>one surgery and do not expect any more. I read all of the posts on here and >>have come to the realization that I do not belong here. I can still here my >>doctor many years ago saying to me--"you have scoliois it does not have you". I >>have come to realize that I am very lucky and have many friends who have had the >>same surgery and have no problems. I am one oldie who is very grateful for the >>life I have now after the surgery. This site has been interesting but like I >>said I do not belong here with all of you who ae having problems>>>>>>>>>________________________________>From: bethann0917 <bethann0917@...>>> >>Sent: Thu, February 17, 2011 3:38:37 PM>>Subject: Thanks to Carol>>>> >>Thanks, Carol, for the lovely, positive feedback! Occasionally over the years, >>questions have arisen as to the need for this wonderful site since SO much has >>changed since it's early beginnings. But while the treatments and surgical >>procedures for Scoliosis and Flatback Syndrome may have evolved (thank >>God!)there is still much to learn from it's history. And who better to educate >>the "newbies" than the "veterans"!!>>>>Diagnosis and treatment options have improved for all phases of this Orthopedic >>nightmare but the physical and emotional impacts of it, sadly, have not. There >>are still folks out there who remain as clueless and frightened as to what is >>happening to them as many of us once were. And sadly, there are still far too >>many so-called "Adult Scoliosis Specialists" and "Pain Management Specialists" >>who remain ignorant of the advances in these fields! I have much more respect >>for physicians/specialists who have the courage to admit, "I'm not sure what's >>happening to you or why! Let's do some research into this and see what we can >>come up with!" than the ones who rush to judgment and begin unnecessary and/or >>incorrect treatment plans! >>>>>>I admire physicians who encourage their patients and their families to do >>internet searches, ask questions, question treatments, etc. My Orthopedic >>surgeon, while not new to Flatback Syndrome and it's various treatment options, >>originally did for me, what was considered in 1998, to be a bold/unusual >>technique; he performed an anterior, laproscopic procedure of disc removals and >>inserted pedicle screws at L3,4,5,. NOT to correct the Flatback deformity but in >>the hopes that it would relieve some of my pain and neurological symptoms to >>give me the time I needed to prepare myself and my family for the much more >>invasive, extensive, posterior revision that he knew I'd eventually need but was >>not emotionally ready to commit to at that time. He told us it was a "stop-gap" >>measure not the "optimum, corrective surgical procedure" I would eventually >>need; but he instinctively recognized that I was understandably wary of what I >>was hearing because I had been misdiagnosed, under-treated, and in short, been >>put through a physical and emotional hell by multiple so-called Adult Scoliosis >>and Pain Mgmt "specialists" for the previous 4 1/2 years!!>>>>When I did finally consent to the posterior revision, I was physically and >>emotionally 110% ready to commit to whatever would be necessary to achieve the >>best outcome possible. My family and I had 110% FAITH IN HIM and the decisions >>that he made FOR US! It gave him the confidence to do a more aggressive >>procedure than he normally might have done to another patient because he knew he >>had my total commitment. That's why he took the chance of doing much more >>aggressive osteotomies to hopefully obtain a better final result...and it >>WORKED!! And while the more aggressive approach required me to once again be >>confined to bed for a few months(just to ensure that the pedicle screws would >>stay in their positions until the fusion mass could maintain the correction)and >>also required a far greater commitment by my husband and sons to care for me at >>home while I was recuperating, the final results were worth every sacrifice we >>had to made!!>>>>My surgeon was honest and straight-forward with all of us from the get-go. He >>NEVER promised that I would ever be totally pain free; he answered all our >>questions (sometimes again and again!)and explained things in ways we could ALL >>understand. I have a medical background and understood words, terms and phrases >>that went over my husband and sons' heads; they understand cars, motorcycles and >>mechanics! So when he answered their questions, he used visual aids (a movable >>spine model, screws, screwdriver, hammer, etc) and got to indulge in his >>"frustrated-mechanic/Orthopedic surgeon" side as well, using mechanical terms >>and phrases that made absolute sense to my guys!! And although the procedure >>itself took a bit longer than expected, he made sure that one of the residents >>and/or floating surgical nurses kept my family/friends informed throughout the >>long 11 1/2 hrs., and even accompanied them into the Neuro ICU post-op to >>prepare them for how bizarre/bloated I would look and be there to answer any >>further questions. Now THAT'S a CARING, DEDICATED SURGEON!!>>>>My Pain Mgmt specialist has been just as honest and forthcoming with my family >>and me. For the past 9+ yrs he has never rushed us through an appointment, >>answers our questions to the best of his ability and when he doesn't know an >>answer, admits it and will sit there and do internet searches until we're all >>satisfied...including him!! When he reads about new research/treatments specific >>to Flatback Syndrome and related Pain Mgmt.treatments, he'll e-mail me computer >>links or scan an article to me! >>>>>>I've been to hell and back in my quest to find the best physicians I could for >>my own Flatback and related problems.But my end results, the physicians who have >>and are currently treating me are among the GREATEST BLESSINGS IN MY LIFE!! If I >>can save just one person...one family...from even one MOMENT of some of the hell >>I've experienced, then the time Ive spent writing my posts for the Feisty site >>over the years...the good and the bad...will have been time well spent!! I've >>been the recipient of such invaluable info and advice from so many others on >>this site! >>>>>>I can still vividly remember the first time I found the , >>totally by accident. It was after my very 1st visit to my current Ortho surgeon >>and also the very 1st time I'd ever heard the term "Flatback Syndrome". I sat >>down at our 1st home PC, typed in the term in a search engine (these were >>pre-Google days, remember friends!!)and found this health site. We >>didn't have near as many members back then but I devoured every word over and >>over again...and bawled my eyes out!! I could not believe that I had found these >>amazing people who were suffering in the exact ways I was! Some had answers, >>many had questions, but ALL had this strange thing called Flatback Syndrome. I >>had found a home...a place of refuge and peace and friends.>>>>I still think of this site as my saving grace...always will...>>>>All my best,>>Beth >>>>>>> >>>> > Hi Feisty friends,>>> > >>> > Once again I must agree with on this one. Y'all probably think I >>>have no opinions of my own but TRUST me...if you read back over some of my posts >>>in the past 10 yrs (WOW! 10 yrs!!), you will see that I've often been >>>"criticized" for my, oft' too vocal and long-winded opinions! But that's the >>>beauty of this site...we ALL have an equal opportunity to weigh in on the issues >>>we Feisties face day in and day out.>>> > >>> > Since I'm writing this on Super Bowl Sunday and I happen to live a mere 100 >>>miles from Pittsburgh, PA. (GO STEELERS!!!) I hope our HARD WORKING moderators >>>will allow a wee football reference...there is no 'standard play book' when >>>dealing with Flatback Syndrome or Failed Spine Syndrome. Each patient is >>>unique...each set of symptoms frustrating and often baffling, for the patient, >>>for the physicians and surgeons and for the friends and families. So there is no >>>such thing as S.O.P. (standard operating procedure) when it comes to revision >>>surgeries. And anyone who tells you differently is, well...to put it nicely, >>>uninformed. >>>>>> > >>> > The evolution of surgical procedures for correction of scoliotic deformities >>>is a case study in the history of Orthopedics, mechanics, carpentry, and high >>>tech, computer technology. From the early days (I'm talking waaaay back to the >>>60's and 70's here folks) with weeks of pre-op traction, months of total bed >>>rest in those horrendous Riser body casts and surgical stainless steel >>>Harrington rod instrumentation, to surgical titanium pedicle screws, segmental >>>instrumentation, Evoked Response Spinal Cord monitoring and out of bed within >>>the first 24 hrs...look how far we've come, my friends!! >>>>>> > >>> > Just as the surgical procedures have evolved, so have the opinions on what >>>the "optimum outcome" of a revision surgery for Flatback Syndrome should be. >>>Anyone who has watched or experienced first-hand the devastating physical and >>>emotional effects of this "monster deformity" knows that it is a multi-faceted >>>problem. There's the Orthopedic aspect...the often slow realization that we >>>can't stand up straight no matter how much we try; or my favorite... the >>>infamous (to US at least!!) penguin walk! Then there's the Medical aspect...the >>>increasing pain, fatigue, inability to get a decent nights' sleep, etc. >>>>>> > >>> > And last, but certainly not least, there's the emotional/mental aspect...and >>>here's where I tend to hop on my soap box!! The realization that our lives at >>>perhaps the quite young ages of 35 -45 are changing... and NOT for the better!!! >>>Where are those "golden years" we've heard about??!! Personally, one of my >>>BIGGEST complaints about Flatback Syndrome is, "Why the H-- did I go through >>>laying in bed for 6 months when I was 16 yrs/o... when ALL my friends were >>>starting to date and go to high school football games, going to dances and >>>perhaps, getting their first kiss??!!" "Why did my parents & brother sacrifice >>>SO much so that I could have the Harrington rod surgery??!!" Call it the "poor >>>me's" but there you have it!I And I still get angry every time I think back to >>>when my Flatback symptoms first reared their ugly heads in 1994. I went through >>>months of appointments with local Orthopedic, Neuro docs, physical therapy, >>>myelograms, CT's, intra-dural>>> > steroid injections...name it, I trudged through it, without ever being given >>>a definitive diagnosis! All the while trying to work, be a wife and raise 2 >>>young boys. It wasn't until we moved in 1996 to a bigger city, with a more >>>progressive medical community, that I was even diagnosed!! By then, I had lost >>>close to 3" in height, was in constant painand had irreversible neurological >>>damage in my leg.>>> > >>> > Then there's the daily, intractable pain that physician after physician after >>>physician contribute to either menopause or "empty nest syndrome" or one of my >>>personal favorites, the "it's all in your head" diagnosis!! Trying to explain to >>>friends and family that "2 Aleve DO NOT stop this pain!" Being looked upon as a >>>"drug seeker" by medical personnel who may never have heard of scoliosis, let >>>alone Flatback Syndrome. Being referred to as someone who "doctor shops" for >>>pain meds and/or the dreaded "narcotics"!! Seriously people...when is the >>>medical community going to wake up...perhaps READ an issue of the Journal of >>>the American Medical Association (aka JAMA)... or info published by The American >>>Pain Foundation or a Pain Mgmt specialist...or, God forbid, actually LISTEN to >>>a patient??!! Oops...put the soap box away, Beth! >>>>>> > >>> > And for as many symptoms that are associated with Flatback Syndrome, so, too, >>>are there varied opinions as to what is the BEST approach to correct it. Every >>>patient is UNIQUE. Every Orthopedic surgeon who treats patients with Flatback >>>Syndrome has his or her opinion regarding the "anterior vs posterior vs the >>>combo anterior/posterior" surgical approach. In my (very humble!) opinion that >>>is perhaps the most important reason to get second (and even third!) opinions >>>before committing to any type of revision procedure. And another reason why this >>>site is such an invaluable source of info for anyone researching revision >>>surgery. Over and over you read posts on the Feisty site about why it is so >>>vitally important to seek opinions and/or treatment from QUALIFIED, Orthopedic >>>surgeons who specialize in revision procedures! And why it's so necessary for >>>your peace of mind to continually ask questions and not be satisfied until you >>>get answers. >>>>>> > >>> > Good thoughts go out to anyone struggling with making this huge, >>>life-changing decision; and to everyone who's got an upcoming revision >>>procedure. Keep us updated on your progress and don't hesitate to ask questions. >>>One of my favorite sayings is "The only stupid questions are the ones you DON'T >>>ask! >>>>>> > >>> > All the best,>>> > Beth>>> > >>> > >>> > >>> > >>> >>>>>>>>>> >>> Quote Link to comment Share on other sites More sharing options...
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