Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Hi and welcome! I too am looking for a surgeon in the same area and was about to call Emory. I wish I could help you with a surgeon. I do hope the surgeon is a goo one. Hope you feel better soon!!! Much Peace, Robin On Sun, Jul 12, 2009 at 7:26 PM, ilovemyrotts <ilovemyrotts@...> wrote: Hi everyone-I recently discovered this group and I am excited about communicating with others who have similar problems. My original surgery was done by Dr. in 1983 at University Hospital in Augusta Georgia. I was diagnosed with flatback last fall. Since then, I have been researching flatback and revision surgery. I have an appointment for a consultation with Dr. Horton at Emory University on August 10th. I would love to hear from anyone who has had experience with Dr. Horton. There are limited revision specialists in this area of the country. Looking forward to being part of this group!Tonya -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Thanks so much for your post. I'm glad you feel free to vent here! That's one important aspect of this site I have tried to preserve, the freedom all of us should feel (because we do need this freedom somewhere in our lives) to unload a little when things get too frustrating or overwhelming. I am always touched by the empathy and support that so often come from various group members when one of us feels the need to go ballistic! I'm glad that you, and possibly others, are staying on top of the FDA situation. Please keep us posted on that if you can . . . Best, > > Robin, > > Welcome to the group. This is a great place for scoliosis patients. You can ask questions and everyone is very helpful. Once in a while when I get particularly frustrated it's a good place to vent. Nobody else really understands what we live with every day. > > , I am keeping up with the news about the FDA possibly limiting the use of pain medications. It's scary. Next time I see Dr. Long I will ask her if she knows what's going on. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Hi again, Tonya -- I had to chuckle at myself just now as I was browsing the posts and saw yours again. I noticed your handle is " ilovemyrotts. " For just a split second I was misreading it as a typo. I was going, " WHAT? She LOVES her RODS? Wow, that's a new one . . . " Of course I realized immediately that you must be the fond owner of some adorable Rottweilers. Best, > > Hi everyone- > > I recently discovered this group and I am excited about communicating with others who have similar problems. My original surgery was done by Dr. in 1983 at University Hospital in Augusta Georgia. I was diagnosed with flatback last fall. Since then, I have been researching flatback and revision surgery. I have an appointment for a consultation with Dr. Horton at Emory University on August 10th. I would love to hear from anyone who has had experience with Dr. Horton. There are limited revision specialists in this area of the country. > > Looking forward to being part of this group! > > Tonya > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Hi, Robin -- I'm afraid the answer to your question is pretty complex. I don't want to sound as if I'm evading it, but it's just awfully hard to summarize all of our surgical outcomes in a coherent and definitive way. Some people were definitely not helped, or were actually hurt by the surgery. There is an estimated 30% rate of complications, although that includes both major and minor complications. In one or two cases we have had complications which were not reversible, or the surgery seemed to make the person worse in some way. Also, I wish I knew how many of us actually did feel it substantially helped their pain. I know that some members definitely feel this way, but others of us -- and I include myself --- have gotten relief of everything BUT pain. Thankfully I now have an implanted pump which keeps me relatively pain free by infusing pain medication into my spinal canal 24/7. (That pump has had some problems too, however.) Then there are interim pains and problems that people tend to have for some time after the surgery. Some of us felt we did not reach our maximum improvement for up to three years. Many of us were not able to go back to regular jobs. We have had many different kinds of post-op effects, some of them kind of anxiety-provoking or extremely irritating. To give you one example, it is very common to have numbness and tingling in various parts of your body as severed nerves regenerate over time. It is also not that rare to have more acute problems, such as ill effects from extremely prolonged general anesthesia or unexpected bad reactions to other medications administered in the hospital. I am not saying any of this to alarm you or worry you; all in all, I suspect that the majority of us have no regrets. But I would never underestimate the seriousness of the decision to have this surgery and the importance of finding the most experienced and qualified flatback revision surgeon one can possibly find -- even if this requires a long trip to get to the surgeon. (For my initial revision surgeries, I traveled 1,000 miles with the help of my brother, who rented a van that allowed me to recline and then just kept driving till we got there! -- I will always be profoundly grateful to him for making the whole thing possible, since I had not really been able to manage car trips for several years by then, and taking a flight was unthinkable in my condition. I also had very little money and almost failed completely at arranging the needed insurance coverage despite four years of appeals. My carrier kept wanting to send me to a quack, if you will excuse the expression, in my own city, rather than paying for a qualified specialist in another jurisdiction. As I look back on the whole thing, getting to the surgeon and actually having the surgery were improbable bordering on impossible, but as I wrote before, I had come to feel I had no other choice by the time I had deteriorated to that extent. In the end, some unknown constellation of factors --gritty determination, divine intervention, dumb luck, the moon in Pisces? -- got us all to it and through it. One consideration that might help you: My second revision surgeon, Dr. Ondra in Chicago (but now in Washington serving in Veterans Affairs at the request of President Obama) told me the last time I saw him here that it does not seem to make a big difference whether you postpone the revision surgery or get it earlier. That's just anecdotal and conversational, of course -- I don't know if there are any formal studies in that area as yet. We used to feel that it might be best to get it sooner rather than later, but in fact, that may not matter as much as we thought. Still, when it comes to many issues surrounding flatback syndrome and its correction, we are all -- doctors and patients -- still pretty much learning as we go. I hope and trust that you will get plenty of opinions and personal narratives from other members of this group. (You can also browse others' comments in the archives, which span the whole nine years this group has been online.) Ideally we will not be leaving you " wandering in the wilderness. " Ultimately, of course, the decision is totally personal -- only you can decide when, where, if, etc. And even when (if) you decide yes, it's a go, you will be taking a bit of a gamble. You are doing the best possible thing you can by ensuring that you have as much information as possible before you make this very major commitment. I know what you must be going through, and so do a whole bunch of other Feisty members . . . hang in there. Best, > > > > > > Hi, > > > > > > Just joined the group and wanted to say Hi. > > > > > > I had 2 failed back surgeries as well as serious spasms....I was recently > > dx with flatback. My clothes don't fit, I find it hard to stand for 5 > > minutes at the most and have terrible spasms. I guess you can relate. Has > > anyone had corrective surgery and did it help?? > > > > > > Any info would be great! > > > > > > Peace, > > > > > > Robin > > > > > > > > > > > > > -- > Live the life you have imagined! > HD Thoreau > > Things do not change. We change. > HD Thoreau > > There is life after PTSD!!! > > Life is what you make of it! > Waneeshee.......may the way be beautiful for you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Hi , Thank you so much for the information, I really appreciated it. At the moment, I am just thinking of it as I have had 2 failed surgeries though an wonder if the revision would help. I can take pain but not this amount without medication. They have spoken with me about a stimulator to stop some of the pain but I am hesitant because I have other problems such as foot drop, total non feeling in my leg at times and I almost fall or often even with my cane. The spasms really get me an I can only stand about 5 minutes at a time. What concerns me is the tilt of my body which makes me feel I will fall face first. There are a host of other symptoms but I am sure you know what they are. I have been to many doctors who have given me the diagnosis; my pain doctors do not know much about flat back so if they have not studied up on it, I will give them some notes to look at. Thanks for giving me such good information! I am just waking so I hope I am making sense! Much Peace, Robin On Fri, Jul 17, 2009 at 4:25 AM, Rasche <elizabethrgonzalez@...> wrote: Hi, Robin --I'm afraid the answer to your question is pretty complex. I don't want to sound as if I'm evading it, but it's just awfully hard to summarize all of our surgical outcomes in a coherent and definitive way. Some people were definitely not helped, or were actually hurt by the surgery. There is an estimated 30% rate of complications, although that includes both major and minor complications. In one or two cases we have had complications which were not reversible, or the surgery seemed to make the person worse in some way. Also, I wish I knew how many of us actually did feel it substantially helped their pain. I know that some members definitely feel this way, but others of us -- and I include myself --- have gotten relief of everything BUT pain. Thankfully I now have an implanted pump which keeps me relatively pain free by infusing pain medication into my spinal canal 24/7. (That pump has had some problems too, however.) Then there are interim pains and problems that people tend to have for some time after the surgery. Some of us felt we did not reach our maximum improvement for up to three years. Many of us were not able to go back to regular jobs. We have had many different kinds of post-op effects, some of them kind of anxiety-provoking or extremely irritating. To give you one example, it is very common to have numbness and tingling in various parts of your body as severed nerves regenerate over time. It is also not that rare to have more acute problems, such as ill effects from extremely prolonged general anesthesia or unexpected bad reactions to other medications administered in the hospital. I am not saying any of this to alarm you or worry you; all in all, I suspect that the majority of us have no regrets. But I would never underestimate the seriousness of the decision to have this surgery and the importance of finding the most experienced and qualified flatback revision surgeon one can possibly find -- even if this requires a long trip to get to the surgeon. (For my initial revision surgeries, I traveled 1,000 miles with the help of my brother, who rented a van that allowed me to recline and then just kept driving till we got there! -- I will always be profoundly grateful to him for making the whole thing possible, since I had not really been able to manage car trips for several years by then, and taking a flight was unthinkable in my condition. I also had very little money and almost failed completely at arranging the needed insurance coverage despite four years of appeals. My carrier kept wanting to send me to a quack, if you will excuse the expression, in my own city, rather than paying for a qualified specialist in another jurisdiction. As I look back on the whole thing, getting to the surgeon and actually having the surgery were improbable bordering on impossible, but as I wrote before, I had come to feel I had no other choice by the time I had deteriorated to that extent. In the end, some unknown constellation of factors --gritty determination, divine intervention, dumb luck, the moon in Pisces? -- got us all to it and through it. One consideration that might help you: My second revision surgeon, Dr. Ondra in Chicago (but now in Washington serving in Veterans Affairs at the request of President Obama) told me the last time I saw him here that it does not seem to make a big difference whether you postpone the revision surgery or get it earlier. That's just anecdotal and conversational, of course -- I don't know if there are any formal studies in that area as yet. We used to feel that it might be best to get it sooner rather than later, but in fact, that may not matter as much as we thought. Still, when it comes to many issues surrounding flatback syndrome and its correction, we are all -- doctors and patients -- still pretty much learning as we go. I hope and trust that you will get plenty of opinions and personal narratives from other members of this group. (You can also browse others' comments in the archives, which span the whole nine years this group has been online.) Ideally we will not be leaving you " wandering in the wilderness. " Ultimately, of course, the decision is totally personal -- only you can decide when, where, if, etc. And even when (if) you decide yes, it's a go, you will be taking a bit of a gamble. You are doing the best possible thing you can by ensuring that you have as much information as possible before you make this very major commitment. I know what you must be going through, and so do a whole bunch of other Feisty members . . . hang in there. Best, > > >> > > Hi,> > >> > > Just joined the group and wanted to say Hi.> > > > > > I had 2 failed back surgeries as well as serious spasms....I was recently> > dx with flatback. My clothes don't fit, I find it hard to stand for 5> > minutes at the most and have terrible spasms. I guess you can relate. Has > > anyone had corrective surgery and did it help??> > >> > > Any info would be great!> > >> > > Peace,> > >> > > Robin> > > > >> > > >> > > > -- > Live the life you have imagined!> HD Thoreau> > Things do not change. We change.> HD Thoreau> > There is life after PTSD!!!> > Life is what you make of it! > Waneeshee.......may the way be beautiful for you> -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 Yes, I am! Sable and Diezel are my sweet rotties! Tonya From: Rasche <elizabethrgonzalez@...>Subject: Re: New Member Date: Friday, July 17, 2009, 7:45 AM Hi again, Tonya --I had to chuckle at myself just now as I was browsing the posts and saw yours again. I noticed your handle is "ilovemyrotts. " For just a split second I was misreading it as a typo. I was going, "WHAT? She LOVES her RODS? Wow, that's a new one . . ."Of course I realized immediately that you must be the fond owner of some adorable Rottweilers. Best,>> Hi everyone-> > I recently discovered this group and I am excited about communicating with others who have similar problems. My original surgery was done by Dr. in 1983 at University Hospital in Augusta Georgia. I was diagnosed with flatback last fall. Since then, I have been researching flatback and revision surgery. I have an appointment for a consultation with Dr. Horton at Emory University on August 10th. I would love to hear from anyone who has had experience with Dr. Horton. There are limited revision specialists in this area of the country.> > Looking forward to being part of this group!> > Tonya> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 My pleasure, Robin. You have an absolute right to adequate pain medication. Whether or not you feel the neurostimulator is right for you (and I can understand your reservations), you need a pain management regimen that will keep you as comfortable as possible. If you current docs are not coming through for you, keep at it and don't give up no matter what. Despite the ongoing " drug scares, " the most solid studies show that the hundreds of thousands of us with chronic pain are undertreated (at least here in the US). Many of us have had to fight repeatedly for the help we need -- as hard as it is to summon much " fight " when you are in grueling, relentless pain. The neuro symptoms you mention put things in a little different light for me. Do your doctors think that these are a result of your flatback syndrome? If so, maybe you WILL want to arrange your revision surgery ASAP. A foot drop sounds fairly serious. I can sympathize with your fear of falling. Especially if your fusion is on the long side, a fall is potentially serious because you can not easily " break it. " I have fallen three times over the years, each time landing pretty much flat on my face. The first time, I literally gave myself a black eye on the sidewalk. I am glad you have a cane, although it doesn't sound as if that completely sets your mind at ease. This might sound dreadful, but at some point you might want to consider a walker. I had one with wheels and a shopping-cart-type basket under a seat that I could plop down on if I ever got too exhausted from holding myself upright (say, in a long line at the supermarket). I even used it for a little while after my revision surgery, till I finally got it clear in my head that I was no longer bent over and in no further need of something to hang onto! Do you know if revision surgery is expected to relieve the nonfeeling in your leg and the foot drop? Can you tell if your flatback is getting worse? If so, are these neurologic problems also worsening? Best, > > > > > > > > > > Hi, > > > > > > > > > > Just joined the group and wanted to say Hi. > > > > > > > > > > I had 2 failed back surgeries as well as serious spasms....I was > > recently > > > > dx with flatback. My clothes don't fit, I find it hard to stand for 5 > > > > minutes at the most and have terrible spasms. I guess you can relate. > > Has > > > > anyone had corrective surgery and did it help?? > > > > > > > > > > Any info would be great! > > > > > > > > > > Peace, > > > > > > > > > > Robin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Live the life you have imagined! > > > HD Thoreau > > > > > > Things do not change. We change. > > > HD Thoreau > > > > > > There is life after PTSD!!! > > > > > > Life is what you make of it! > > > Waneeshee.......may the way be beautiful for you > > > > > > > > > > > > > -- > Live the life you have imagined! > HD Thoreau > > Things do not change. We change. > HD Thoreau > > There is life after PTSD!!! > > Life is what you make of it! > Waneeshee.......may the way be beautiful for you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2009 Report Share Posted July 20, 2009 Hi, I am on my way to visit my pain doctor but I wanted at least to acknowledge your email. My pain is worsening and the left side is involved now too. My pain med doctors don't really know what flat back is; I think they may know it as failed back surgery. I am going to ask them to look at the way I walk an to see the curve. I wear very loose fitting clothing due to the way the butt and gut look and they see me sitting down for the most part. The curve has become more noticeable it seems overnight but at it's been a short duration. I don't enjoy looking at the ground. Listing to the side happens more and I fell just a few days ago; I am glad I landed on the sofa! I'll write more later. I hope your day goes well! Thanks again for the info, I appreciate it! Much Peace, Robin On Sun, Jul 19, 2009 at 11:48 AM, Rasche <elizabethrgonzalez@...> wrote: My pleasure, Robin.You have an absolute right to adequate pain medication. Whether or not you feel the neurostimulator is right for you (and I can understand your reservations), you need a pain management regimen that will keep you as comfortable as possible. If you current docs are not coming through for you, keep at it and don't give up no matter what. Despite the ongoing " drug scares, " the most solid studies show that the hundreds of thousands of us with chronic pain are undertreated (at least here in the US). Many of us have had to fight repeatedly for the help we need -- as hard as it is to summon much " fight " when you are in grueling, relentless pain. The neuro symptoms you mention put things in a little different light for me. Do your doctors think that these are a result of your flatback syndrome? If so, maybe you WILL want to arrange your revision surgery ASAP. A foot drop sounds fairly serious. I can sympathize with your fear of falling. Especially if your fusion is on the long side, a fall is potentially serious because you can not easily " break it. " I have fallen three times over the years, each time landing pretty much flat on my face. The first time, I literally gave myself a black eye on the sidewalk. I am glad you have a cane, although it doesn't sound as if that completely sets your mind at ease. This might sound dreadful, but at some point you might want to consider a walker. I had one with wheels and a shopping-cart-type basket under a seat that I could plop down on if I ever got too exhausted from holding myself upright (say, in a long line at the supermarket). I even used it for a little while after my revision surgery, till I finally got it clear in my head that I was no longer bent over and in no further need of something to hang onto! Do you know if revision surgery is expected to relieve the nonfeeling in your leg and the foot drop? Can you tell if your flatback is getting worse? If so, are these neurologic problems also worsening? Best,> > > > > > > > > > Hi,> > > > >> > > > > Just joined the group and wanted to say Hi.> > > > >> > > > > I had 2 failed back surgeries as well as serious spasms....I was > > recently> > > > dx with flatback. My clothes don't fit, I find it hard to stand for 5> > > > minutes at the most and have terrible spasms. I guess you can relate.> > Has > > > > anyone had corrective surgery and did it help??> > > > >> > > > > Any info would be great!> > > > >> > > > > Peace,> > > > > > > > > > Robin> > > > >> > > >> > > >> > > >> > >> > >> > >> > > --> > > Live the life you have imagined! > > > HD Thoreau> > >> > > Things do not change. We change.> > > HD Thoreau> > >> > > There is life after PTSD!!!> > >> > > Life is what you make of it! > > > Waneeshee.......may the way be beautiful for you> > >> >> > > >> > > > -- > Live the life you have imagined!> HD Thoreau > > Things do not change. We change.> HD Thoreau> > There is life after PTSD!!!> > Life is what you make of it!> Waneeshee.......may the way be beautiful for you> -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Welcome to the group! I'm so sorry you've had such a tough time but know that you are amongst friends and we can all empathise with your struggles. Scoliosis has caused havoc in different ways for all of us but I count myself so much luckier because of this group - I, too, no longer feel alone with this and am very grateful for the support this group has offered me. best wishes Judith From: pauline_teague <pauline_teague@...> Sent: Sunday, July 26, 2009 9:47:15 PMSubject: New member I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore.But scared to death. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Thanks I live in town Texas.--- In , " advokam " <advokam@...> wrote: > > You are in the right spot. There are many who can relate to your > story. Where do you live? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Thanks to all who responded I'm ctying reading all of the responses, Thanks to all. Seven days and counting.......scared to death. Prayers are welcome. ine > > Welcome to the group! > > I'm so sorry you've had such a tough time but know that you are amongst friends and we can all empathise with your struggles. > > Scoliosis has caused havoc in different ways for all of us but I count myself so much luckier because of this group - I, too, no longer feel alone with this and am very grateful for the support this group has offered me. > > best wishes > > Judith > > > > > ________________________________ > From: pauline_teague <pauline_teague@...> > > Sent: Sunday, July 26, 2009 9:47:15 PM > Subject: New member > > > I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using > cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore. > But scared to death. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 Hi, I am rather new here....I guess it's between really new and being around for a few months. It's nice to meet you. I wanted to wish you a successful surgery with great healing time. You will be in my thoughts. Much Peace, Robin On Sun, Jul 26, 2009 at 4:47 PM, pauline_teague <pauline_teague@...> wrote: I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore. But scared to death. -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 Hi Judith, I am trying to say hi to more people; it's nice to meet you. I don't feel so alone either. I have never met or known anyone with all this stuff going on. My pain management doctors don't really know what flat back is. Those who diagnosed me with it said they would send info to them. I know it's getting worse an the spasms make me cry at time, and I can take a lot of pain. I believe I read a post where someone was going to Emory hospital. I live on the outskirts of Atlanta, Georgia, so it's not far from home. I think there is only one Emory. Sorry I rambled on; pain and catching naps when I can makes me goofy. I hope your day is going well. Peace, Robin On Tue, Jul 28, 2009 at 6:56 AM, Judith <highs_and_lows08@...> wrote: Welcome to the group! I'm so sorry you've had such a tough time but know that you are amongst friends and we can all empathise with your struggles. Scoliosis has caused havoc in different ways for all of us but I count myself so much luckier because of this group - I, too, no longer feel alone with this and am very grateful for the support this group has offered me. best wishes Judith From: pauline_teague <pauline_teague@...> Sent: Sunday, July 26, 2009 9:47:15 PMSubject: New member I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore. But scared to death. -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 ine, My thoughts and prayers are with you! It is so helpful that there are so many people here at this site who can share their experiences and help you better prepare for this incredible surgery you will be undergoing. I think everyone here is mentally squeezing your hand to help you be strong - hang on! Wishing you the very best, Jeanne New member> > > I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using> cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore.> But scared to death.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 ineI wish for you the best of results and easiest of recoveries. You will be in my thoughts & prayers. PaSent from my iPhoneOn Jul 29, 2009, at 3:32 PM, "robinfallentine@..." <robinfallentine@...> wrote: Hi, I am rather new here....I guess it's between really new and being around for a few months. It's nice to meet you. I wanted to wish you a successful surgery with great healing time. You will be in my thoughts. Much Peace, Robin On Sun, Jul 26, 2009 at 4:47 PM, pauline_teague <pauline_teague > wrote: I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore. But scared to death. -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 Hi ine, The best of luck to you next week! > > I am so happy I found this s group, I cant tell everyone how alone I have felt for the last 30 years. My name is ine I am 47. I was 16 when I had my first scolosis surgery for a severe s curve . At Columbia presb. in NYC by Dr. Hugo Keim. I was in a scolosis ward for 21 days and came home in a plaster body cast for 9 months an awful experience at that age. I only had moderate back pain for the next 15 years. But in 1995 I was in severe pain and I was told that my Harrington rod had cracked along with some fusion. I had my rod removed and some fusion repaired and had a rod put in my lower spine by Dr. Spira in NYC. My pain has been increasing through out the last few years. I have since moved to Austin Texas. I found Dr. Lowenstein from Spine Austin and was diagnosed with severe flatback syndrome. I am scheduled for my first out of two surgeries on August 5th and scared to death. Dr Lowenstein will be removing discs L4-L5,L5-S1 and using cages,and spacers and going in from my belly, then from the back fixing some fractures. Crazy..... Hoping that all goes well my second surgery will repair fractures to my thoracic spine were the origional Harrington rod was connected but that fusion never healed correctly. I appreciate everyones support, information & prayers. I dont feel all alone anymore. > But scared to death. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Hello Khush, welcome to our forum where I hope you get all the help and support you need. Never, never take a doctors word when he tells you that your thyroid gland function tests are " normal " . You need to get hold of your results and the reference range for each of the tests and post them here. Doctors tell you that your results are normal if they are anywhere within the reference range. They do not tell you whether you are at the bottom, the middle or the top of the range. This matters. We will have a better idea of what might be happening when we see them. Also, please remember that the thyroid gland function tests are just that. They ONLY test the function of the gland - to see whether it is pumping out enough thyroid hormone. Many of us are capable of doing that, so our results show " normal " , but what these tests do not show is whether the thyroid hormone is actually getting into the cells. Many of us are left without a diagnosis and without the treatment that will give us back our health because there are no blood tests that can check peripheral thyroid hormone resistance. How have you been supporting your adrenals for the past 5 years. It may be that you need to go on a short course of hydrocortisone to boost them properly. If you are suffering with adrenal insufficiency, then you have to replace what you are not making, in the same way if you have low thyroid function, you have to replace this with thyroid hormones. Have you done the 24 hour salivary adrenal profile. This check the level of your DHEA and cortisol at four specific times during the day. I would recommend that you get this done, because the symptoms you have certainly suggest this might be the case. I have to admit that I know nothing about homeopathic T3 or T3 and T4 or homeopathic Armour, so cannot help here, but have a look at one study http://drptandon.blogspot.com/2008/01/effect-of-homeopathically-prepared.html .. Can you tell us a little more about this please? Luv - Sheila I am a practitioner in nutrition, homeopathy and homotoxicology and therefore have a question to you...has anyone tried homeopathic T3 or T3 with T4 or even homeopathic armor? I am in the process of having Ainsworth (homeopathic pharmacy) to make some homeopathic armor...as I prefer to go this way if poss...have any of you tried any of these routes? and if so any feedback? I have used homeopathic cortisone and testosterone in clinic so why not T3 and or T4 with T3 or armor?...can anyone shed any light on this? As I am not sure if this has NOT been done why not? Thank you for all the discussions..I will be referring people to this group and a great e-community spirit too! Khush Mark No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.420 / Virus Database: 270.14.5/2418 - Release Date: 10/06/09 18:34:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Hello Stella I am an occasional visitor here, so forgive me if someone else has already said this: don't despair. I don't know what ABI is, and without your test results it is difficult to make any really constuctive comments. However, like you,I was treated for years without feeling much better (also, like you, given antidepressants, which made no difference whatsoever) not even Armour Thyroid helped me - but eventually discovered that my problem was reverse T3 - not something the NHS ever tests for. There is a wealth of information here and there will be an answer to your health issues - you don't have to just " soldier on " forever! Deborah > > Hi there > > I am introducing myself here. I have been treated for hypothyroidism > for about 6 years. However I have not felt very different since taking > the medication. > I have been treated (unsuccessfully) with antidepressants. A > psychiatrist diagnosed me with ABI and I had a brain scan which was > terrifying. Then she denied that she had said that which made it all > even more frustrating. > > It is very frustrating as symptoms have apparently not readily been > recognised. Just been " soldiering on " > > Stella > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 ABI ~ Acquired Brain Injury Health of the Nation Outcome Scale HoNOS-ABI 'save as' ~ pdf http://pb.rcpsych.org/cgi/reprint/25/11/421.pdf Bob > > > > Hi there > > > > I am introducing myself here. I have been treated for hypothyroidism > > for about 6 years. However I have not felt very different since taking > > the medication. > > I have been treated (unsuccessfully) with antidepressants. A > > psychiatrist diagnosed me with ABI and I had a brain scan which was > > terrifying. Then she denied that she had said that which made it all > > even more frustrating. > > > > It is very frustrating as symptoms have apparently not readily been > > recognised. Just been " soldiering on " > > > > Stella > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Hi Sheila thank you for your prompt response. I had my blood tests done and naturopathically we use the more 'optimal ranges' rather than the 'standard' ranges. SO what would be considered 'normal' may well be 'abnormal' using the naturopathic ranges. free t3 4.33pmol/L free t4 16.6pmol/L total t4 79.8nmol/L TSH 4.0 mIU/L I am doing the urine test only so that I can try and obtain some armour through a GP, I feel that TSH 4.0 may be a red herring? ...maybe this is wishful thinking. I hear what you are saying about the adrenals, but I personally do not subscribe to synthetic hydrocortisone even in low doses, but this is my own personal decision (and not at all saying it is wrong or right). my cortisol was high at 4pm (12.4nmol/L) and mid night (9.5nmol/L). I did take homeopathic cortisol also to re-address this. I obtained an adrenal glandular from USA by company called Energetix that contains DHEA as my DHEA was low (via. ASI test at 8am at 5nmol/L and mid day at 3.5nmol/L) and that re-balanced and again my own belief is I do not want to take anything synthetic. I hope this makes sense. I currently continue to take the Nutri Ltd Adrenomax. ..although now my ASI test is within healthy ranges. Regarding homeopathic T3 and armor, as homeopathy is about 'stimulating the vital force' so that the body gets the message 'of what it should be doing better' I am pretty convinced that homeopathic T3 and/armor would address this 'resistance' . Thank you for the link on the tadpoles and thyroid, that experiment is quite well documented in amy homeopathic books. I am doing the tests so that I have some 'benchmark' to go by once I start taking homeopathic armour (I was a scientist before going into naturopathic medicine) and would love to repeat the tests again and say 'voila' we can use homeopathic armor...but this is all very premature right now. How exactly homeopathy works , only a quantum physicst (sp?) could explain, but I understand that it re-balances, it does not stimulate or suppress just re-balances and I see this works in clinic. I do have patients who have been on thyroxine and their mood may lift but nothing else...and as you all have mentioned 'resistance' ...this is exactly it...but is resistance due to heavy metals? Is it due to cortisol ...? I suppose there are many answers depending on the individual case. I can give a bit more feedback after the weekend as I am gong to a conference in Central London and it will be covering hormonal health and I do believe the company (an italian homeopathy company called Guna..in csae you want to research it) do a product that has homeopathic T3 as well as one with T4... I look forward to learning more Khush > > Hello Khush, welcome to our forum where I hope you get all the help and > support you need. [Edit Abbrev Mod] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 > > Hi there > > I am introducing myself here. I have been treated for hypothyroidism > for about 6 years. However I have not felt very different since taking > the medication. > I have been treated (unsuccessfully) with antidepressants. A > psychiatrist diagnosed me with ABI and I had a brain scan which was > terrifying. Then she denied that she had said that which made it all > even more frustrating. > > It is very frustrating as symptoms have apparently not readily been > recognised. Just been " soldiering on " > > Stella > I'm not sure what this study is suppost to show, why would thyroid hormone slow down growth? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Hi , If brain injury has affected the pituitary itself (traumatic brain injury may include post-natal haemorrhage) the pituitary may struggle on for years, under-performing, until in later in life, it can't manage to do even the simplest things.....like make sufficient of the signalling molecules for the thyroid and the adrenals. The pituitary also puts out other hormones (like growth hormone, vasotocin/oxytocin) so there may be an imbalance arising from this trauma (howsoever caused) ~ it's called Sheehan's Syndrome if it's due to post-natal haemorrhage (but it may? incorporate other 'causes' too). Collateral damage to the blood brain barrier causes the 'glue' (tricellulin) to come unstuck ~ that locks the 'three corners' of each of three cells together ~ they take on what's called a 'hexagonal close packed' formation to create a continuous sheet of cells one cell thick ~ making a most remarkable structure with a quite enormous area. 'Coming unstuck' ~ is quite literally what happens! What your (broken) 'blood brain barrier' permits through becomes a complex mix of everything that it normally keeps out of the brain. Normally it lets through those essential components like salts, glucose, amino acids and a touch of thyroxine/tri-iodothyronine etc. best wishes Bob [Edit Abbrev Mod] > I'm not sure what this study is suppost to show, why would thyroid hormone slow down growth? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2009 Report Share Posted November 20, 2009 Hi Welcome to the forum! I am sorry I do not know enough to help you but I'm hoping someone who does know will reply. Have you looked at the TPA website? There is a lot information there, including a comprehensive list of hypothyroid symptoms. http://www.tpa-uk.org.uk/index.php Also, have you considered whether your adrenal glands are working properly? There is another section on the adrenal glands on the TPA website, at this link: http://www.tpa-uk.org.uk/associated_conditions.php Perhaps if your adrenals are not working properly that could be one reason for your feelings of anxiety and panic. Sufficient levels of cortisol (produced by the adrenal glands) are needed for thyroid hormone to work properly. I have read that if there is insufficient cortisol then the body compensates by producing more adrenaline sometimes - perhaps that could be why you're anxious. I hope this helps and that someone else will chime in, too. Also, are you familiar with Dr Peatfield? He is an expert on thyroid and adrenals and has written a good book on it. You will probably see a few articles written by him on the TPA site. His book is here: http://www.amazon.co.uk/Your-Thyroid-How-Keep-Healthy/dp/190514010X/ref=sr_1_1?i\ e=UTF8 & s=books & qid=1258750482 & sr=8-1 Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2009 Report Share Posted November 20, 2009 Thanks for your reply, I will look into it as i'm so confused, I have all the symptons and a goitre but the Dr says my thyroid is 100%. Can anyone explain my test results?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Hello and welcome, **** I havehad several symptoms for many years Hair loss, nervousness, panic attacks,palpitations and although I don't have weight loss I never seem to put weight onno matter what I eat. I have distant relatives on both sides of my family whohave been diagnosed with thyroid problems.I believed that when the blood tests came back I could maybe look forward toa future with less anxiety and panic attacks but the results came back today andthe Dr said my thyroid is functioning 100% normal! The only two tests on thesheet under the heading Thyroid function wereTSH 2.14 mlu/L 0.35-3.50FT4 14 pmol/L 8-21. With all the symptoms you are listing it is highly unlikely that your thyroid function is '100% normal' as your GP states. Unless he's got a crystal ball, there is no way on earth to reliably rule out thyroid dysfunction on the strength of a TSH (Thyroid Stimulating Hormone) and FT4 (free thyroxine) alone. The TSH is a stimulating hormone that the pituitary gland sends to the thyroid gland to indicate that there is more thyroid hormone needed for the body to function normally. The greater the demand for more thyroid hormone, the higher the TSH figure. When the figures exceeds the upper ref range, you have a chance of getting diagnosed hypothyroid. The norm ranges for a "normal" TSH are set much too high in the UK (usually 0.3 - 5.0 or even 10.0), but I see that you are stating a ref range of 0.35-3.50 , which is very unusual for this country. But even if the figure were correct, since your TSH is "only" 2.14, I guess you won't get diagnosed just yet. Most doctors will be guided by a patients TSH result, as this is what they are taught to do.... it is wrong to conclude that a patient can't be hypothyroid just because the TSH is inside the "norm", but this is what we Hypothyroidians are up against. The FT4 is the measurement of the "free" (unbound) portion of thyroid hormone circulating in the blood stream. The thyroid gland releases T4 (and to a much lesser degree T3) when the TSH 'demands' it, indicating that the body needs more thyroid hormone. This T4 then gets converted into T3 by the liver and kidneys and on a cellular level. And it is this T3 that is needed inside every single cell of our bodies for proper functioning. Therefore, in order to see a fuller picture, you need to measure the FT3 as well as the FT4 and TSH. If, for instance, your body had problems converting T4 into T3, then there might be sufficient T4 circulating in your veins, but it might not get converted into T3 and reach your cells. Another complication might be Thyroid Autoantibodies. In order to diagnose or rule out thyroid problems you need to check for TPO and TgAA. Those are specific autoantibodies (AA) that target the thyroid and destroy it in the fullness of time. The presence of positive AAs alone is diagnostic of Hashimoto's disease (autoimmune thyroiditis), whatever the TSH, FT4 or FT3 indicate .... although not many doctors will see it this way. Since you say you have a Goiter, it is very possible that you have got positive AAs - and you need to ask your GP or endo to order a FULL thyroid panel, including TSH, FT4, FT3 and TPO & TgAA. He should also check your levels of Ferritin, Folate, Zinc, Copper, Vit B12, Vit D3 and Magnesium. If any of those parameters were low, it could prevent your cells from absorbing the all important T3. Your symptoms listed above also let me believe that you may have adrenal issues. Please look in our files for the Adrenal Questionnaire and test yourself. If your adrenal function is low, you first need to address that, before any possible thyroid treatment. No amount of thyroxine will work until and unless the adrenals are sufficiently supported. In most cases this can be done by supplementing something like Nutri Adrenal Extra, high doses of Vitamin C, and Q10. You also might need to check for the presence of Candida Albicans (pls look in files), as systemic Candida can also give you all of the symptoms you mention above. I hope this helps a little, with best wishes, Quote Link to comment Share on other sites More sharing options...
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