Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 First of all, I would love to always " eat dessert first " ! It is my favorite course. On a more serious note I think that anyone contemplating any ortho surgery needs to know that things never return to " normal " . First of all, you searched out the surgery in order to change things. Secondly, it is my belief that ortho surgery, more than abdominal surgery, changes many parts of our lives amazingly. We must adjust to the fact that we really do not want to go back to where we were or we would not have had the surgery to begin with. Adjusting to new centers, new sensations, etc., takes time. " Twisted Sister " (Kathleen?) was right on target about this! I think that we sometimes go into various surgeries without understanding how much things really will change afterward. I'm trying not to be too wordy at this, and suspect that I am failing! Anyway, hers was a great post! Carole M. (the elder) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Hi, all: While I agree with Kathleen's assessment that proper pain management should be first and foremost, I respectfully suggest that everyone should make their own decisions about how much pain they're willing to live with before revision, and how to balance current and future quality of life. For example, I'm not sure that everyone should wait, as Kathleen says, until one is in the state she describes: " ...literally was in a wheelchair for two months before surgery as i couldnt stand any longer not even for 10 seconds, i was screaming in pain. i was so deformed in agony too. BUT thats where you should be before yoh leap into this surgery. " With respect to Kathleen, my $.02 is that it may not be a good idea to compromise your quality of life that much before having a surgery that in its most recent incarnations has pretty good results for most people. Not perfect results -- we'll all be dealing with this forever -- but with the exceptions of the people who were early " guinea pigs " for revision, and god bless you for your bravery, especially Kathleen who has really been through the wringer with early revision, most people who've had the surgery over the past three years since I joined this group report better outcomes than they had before. I can only speak for myself, but it would have been devastating to my family for me to have waited until I was in a wheelchair to have the surgery. I wanted to have quality time with my kids, to say nothing of needing to work to support my family until I went into the hospital, and I couldn't have worked if I'd waited until I was screaming with pain all the time. And, again in my case only, waiting longer to have had the surgery would have done much more damage to my unfused disks. Had I waited, I may have had to extend the fusion to S1; because I had the surgery before I got worse, I got to save the disks and maintain a bit of flexibility. Plus, I didn't wear out my hips and knees. Should I have waited longer? In my case, definitely not. BUT EVERYONE'S CASE IS DIFFERENT. Any number of people who I greatly adore and respect (even though I've never said so, because hey, that's not my persona, so you'll just have to guess who you are) have chosen to put it off as long as they can. And more power to you. You are brave in a different way than I am. I totally respect your decisions. And I assume that you respect mine. In sum, whether and when to have revision a very personal decision that each of us has to make based on our own medical history, pain levels, lifestyle, family situation, work situation, financial situation, surgical team, etc. While it is reasonable for each of us to share our own thoughts on why we chose to have revision or put it off and general opinions for others -- heck, that's probably more than half of the traffic on this group (well, that and garden ponds) - - everyone's case varies so much that no general advice other than " get a good pain program and investigate all your options " can possibly apply to everyone. With respect and fondness to all... Peace out, Elissa P.S. See? Not even a snarky disclaimer in this one. How unusual is THAT? > Jean- you are too young for surgery. Get proper pain management,first and > foremost. Keep the pain as minimal as possible and possibly on an > anti-depresant as they make the pain meds more effctive. Pain breeds > depression, it doesnt have to be boo hoo crying , mine never was i was just > a grump and stopped smiling and laughing, i was in unbearable pain.., pain > doc, meds dont fight against taking drugs for pain., establish a > relationship with a very good revision doctor, third, judge your disease > progression by your quality of life, if you can have a decent quality of > life albeit on meds you re still NOT ready for revision surgery. In > tracking people since 1997 when i had the disease and i had revison in 1998, > i am 6 years out as of this october and its not easy. Some revison folks do > great, many are not pain free after surgery. I literally was in a > wheelchair for two months before surgery as i couldnt stand any longer not > even for 10 seconds, i was screaming in pain. i was so deformed in agony > too. BUT thats where you should be before yoh leap into this surgery. If > any surgeon tells you will be fine great 100%, RUN away. as they are only > talking with their egos. There are absolutely no 100%. we all have degrees > of remiaming disabilites and problems post revision and its the degree and > luck of the surgery. LUCK , you heard me. LUCK and a good surgein still is > a crap shoot. so please wait as long as possible. To think you will have > your old life back is a drwam that you have to change. You need to accept > the here and now and move forward. we can never be the same again ever. > someone asked about mobility, yes you lose some more being fused to S1 Then > that will strain your Sacro-Iliac joints... no one is mentioning that next > stage of the disease progression i bet...no one does. it may just happen. > You must treat your body as very precious cargo and the simplest of falls > can do the worst neurological damage. i been there done that. I fell six > months after revision, just fell over in my bedroom and did irreversible > damage and more nerve damage. My surgeon at hopkins Kostuik, someone, > damaged my spinal cord and i awoke with horrible nerve pain from the waist > down that never existed pre-surgery. i had the worst treatment under the > staff at the meyer 8 ward of hopkins hospital. They injured me as well. > NOW, I am thankfully upright and can walk miles, with the exception i do > aggravate and make worse my SI joint degeneration by climbing steps , any > activity actually. Unfortunately i do have to take lots of pain meds and its > a constant something but i cope with the care of an excellant pain doctor. I > get into a deep warm water pool and do gentle aqua aerobics which strengthen > my muscles and helps. My quality of life is good and i am trying for very > good but its taken 5 years of struggling post-op revision to get here. > Different doctors, other surgeries, hardware removed ect. The revision > surgery is not the answer to return anyone to a former life, you will make a > new one for yourself. Always have faith and hope and move forward and dont > look back or dwell on the i use to do it and i want to do it again. I've > often heard the hard part is to accept being stuck like 'this' and having to > take meds to do it but you should do whatever it takes to have quality of > life. This revision surgery is not THE answer but a necessary evil to stop > the worsening of your spine health and it may only be a temporary fix for > some of us. We are an unknown for the spine doctors and they are doing their > best and thankfully some revision surgeons are outstanding for their > revision work and compassionate. Their compassion makes this more bearable > knowing someone cares. Make sure you have a doctor that cares about you > after the surgery is done..I was dumped by my revision surgeon six months > after surgery. i was still in pain and he did his job so i was tossed aside > in despair... I am very thankful for my current spine doc, Tom Errico at > NYU Med Center 212-263-7182. He is one of the best revision docs.. dont give > up hope.. keep looking for ways to improve the quality of your life. > wishing you many peaceful moments > TwistedSister in NJ > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback > Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints, > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones, > 2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal; June > 2004 severe abdominal wall herniation repair (3rd time!)(from anterior spine > surgery) > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST ** > Harrington Rod scoliosis people and other post-op multiple spine surgery > people may interested in the following website dedicated to Flatback > Syndrome and revision/salvage spine surgery... " Salvaged Sisters of > Scoliosis " website on Delphi Forums at: > http://forums.delphiforums.com/adultscoliosis/messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Thanks for the chuckle, you sweetie. :^) Re: waiting for surgery Hi, all: While I agree with Kathleen's assessment that proper pain management should be first and foremost, I respectfully suggest that everyone should make their own decisions about how much pain they're willing to live with before revision, and how to balance current and future quality of life. For example, I'm not sure that everyone should wait, as Kathleen says, until one is in the state she describes: " ...literally was in a wheelchair for two months before surgery as i couldnt stand any longer not even for 10 seconds, i was screaming in pain. i was so deformed in agony too. BUT thats where you should be before yoh leap into this surgery. " With respect to Kathleen, my $.02 is that it may not be a good idea to compromise your quality of life that much before having a surgery that in its most recent incarnations has pretty good results for most people. Not perfect results -- we'll all be dealing with this forever -- but with the exceptions of the people who were early " guinea pigs " for revision, and god bless you for your bravery, especially Kathleen who has really been through the wringer with early revision, most people who've had the surgery over the past three years since I joined this group report better outcomes than they had before. I can only speak for myself, but it would have been devastating to my family for me to have waited until I was in a wheelchair to have the surgery. I wanted to have quality time with my kids, to say nothing of needing to work to support my family until I went into the hospital, and I couldn't have worked if I'd waited until I was screaming with pain all the time. And, again in my case only, waiting longer to have had the surgery would have done much more damage to my unfused disks. Had I waited, I may have had to extend the fusion to S1; because I had the surgery before I got worse, I got to save the disks and maintain a bit of flexibility. Plus, I didn't wear out my hips and knees. Should I have waited longer? In my case, definitely not. BUT EVERYONE'S CASE IS DIFFERENT. Any number of people who I greatly adore and respect (even though I've never said so, because hey, that's not my persona, so you'll just have to guess who you are) have chosen to put it off as long as they can. And more power to you. You are brave in a different way than I am. I totally respect your decisions. And I assume that you respect mine. In sum, whether and when to have revision a very personal decision that each of us has to make based on our own medical history, pain levels, lifestyle, family situation, work situation, financial situation, surgical team, etc. While it is reasonable for each of us to share our own thoughts on why we chose to have revision or put it off and general opinions for others -- heck, that's probably more than half of the traffic on this group (well, that and garden ponds) - - everyone's case varies so much that no general advice other than " get a good pain program and investigate all your options " can possibly apply to everyone. With respect and fondness to all... Peace out, Elissa P.S. See? Not even a snarky disclaimer in this one. How unusual is THAT? > Jean- you are too young for surgery. Get proper pain management,first and > foremost. Keep the pain as minimal as possible and possibly on an > anti-depresant as they make the pain meds more effctive. Pain breeds > depression, it doesnt have to be boo hoo crying , mine never was i was just > a grump and stopped smiling and laughing, i was in unbearable pain.., pain > doc, meds dont fight against taking drugs for pain., establish a > relationship with a very good revision doctor, third, judge your disease > progression by your quality of life, if you can have a decent quality of > life albeit on meds you re still NOT ready for revision surgery. In > tracking people since 1997 when i had the disease and i had revison in 1998, > i am 6 years out as of this october and its not easy. Some revison folks do > great, many are not pain free after surgery. I literally was in a > wheelchair for two months before surgery as i couldnt stand any longer not > even for 10 seconds, i was screaming in pain. i was so deformed in agony > too. BUT thats where you should be before yoh leap into this surgery. If > any surgeon tells you will be fine great 100%, RUN away. as they are only > talking with their egos. There are absolutely no 100%. we all have degrees > of remiaming disabilites and problems post revision and its the degree and > luck of the surgery. LUCK , you heard me. LUCK and a good surgein still is > a crap shoot. so please wait as long as possible. To think you will have > your old life back is a drwam that you have to change. You need to accept > the here and now and move forward. we can never be the same again ever. > someone asked about mobility, yes you lose some more being fused to S1 Then > that will strain your Sacro-Iliac joints... no one is mentioning that next > stage of the disease progression i bet...no one does. it may just happen. > You must treat your body as very precious cargo and the simplest of falls > can do the worst neurological damage. i been there done that. I fell six > months after revision, just fell over in my bedroom and did irreversible > damage and more nerve damage. My surgeon at hopkins Kostuik, someone, > damaged my spinal cord and i awoke with horrible nerve pain from the waist > down that never existed pre-surgery. i had the worst treatment under the > staff at the meyer 8 ward of hopkins hospital. They injured me as well. > NOW, I am thankfully upright and can walk miles, with the exception i do > aggravate and make worse my SI joint degeneration by climbing steps , any > activity actually. Unfortunately i do have to take lots of pain meds and its > a constant something but i cope with the care of an excellant pain doctor. I > get into a deep warm water pool and do gentle aqua aerobics which strengthen > my muscles and helps. My quality of life is good and i am trying for very > good but its taken 5 years of struggling post-op revision to get here. > Different doctors, other surgeries, hardware removed ect. The revision > surgery is not the answer to return anyone to a former life, you will make a > new one for yourself. Always have faith and hope and move forward and dont > look back or dwell on the i use to do it and i want to do it again. I've > often heard the hard part is to accept being stuck like 'this' and having to > take meds to do it but you should do whatever it takes to have quality of > life. This revision surgery is not THE answer but a necessary evil to stop > the worsening of your spine health and it may only be a temporary fix for > some of us. We are an unknown for the spine doctors and they are doing their > best and thankfully some revision surgeons are outstanding for their > revision work and compassionate. Their compassion makes this more bearable > knowing someone cares. Make sure you have a doctor that cares about you > after the surgery is done..I was dumped by my revision surgeon six months > after surgery. i was still in pain and he did his job so i was tossed aside > in despair... I am very thankful for my current spine doc, Tom Errico at > NYU Med Center 212-263-7182. He is one of the best revision docs.. dont give > up hope.. keep looking for ways to improve the quality of your life. > wishing you many peaceful moments > TwistedSister in NJ > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback > Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints, > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones, > 2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal; June > 2004 severe abdominal wall herniation repair (3rd time!)(from anterior spine > surgery) > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST ** > Harrington Rod scoliosis people and other post-op multiple spine surgery > people may interested in the following website dedicated to Flatback > Syndrome and revision/salvage spine surgery... " Salvaged Sisters of > Scoliosis " website on Delphi Forums at: > http://forums.delphiforums.com/adultscoliosis/messages Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 I know it's different for everyone. I think being cautious is a good way to go with this surgery. Had I jumped in it like some friends and relatives told me to do 4 years ago I would have been way worse off now. For me, I am glad I waited. My mental state and attitude are much better now. And my kids are older and more self sufficient. My lumbar area is so messed up that I need fusion to the sacrum whether I waited or not.. I need to get metaled up just to stabilize it for any length of time. In my particular case, I am glad I have waited. Everyones different. As they say, to thine own self be true. It takes alot of investigation and soul searching whether you decide to get it done sooner or later. In my case it's a crap shoot anyway. So I chose the latter. But we all have our own reasons as to when to take the plunge. Good luck to everyone, no matter what your decision is. : ) ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 IMPORTANT NOTE TO NEW MEMBERS: Please bear in mind that this post is one person's highly personal and subjective opinion. It includes some good and perceptive comments but also some very strong and authoritative statements that may not apply to you at all. For instance, you can never assume that you are in for a " next stage " involving S-I progression after revision surgery. Everyone is different; every case is unique; it is totally impossible to conclude anything about someone else's prognosis when you have never even laid eyes on the person, let alone her x-rays, let alone your own board certification in the relevant specialty. Without going into a bunch of details, for instance, I certainly expect no S-I problems following my own fusion to the sacrum. (In brief, my S-I joints are fusing nicely -- and painlessly -- on their own, courtesy of Mother Nature and other variables.) Bottom line: It is imperative to sort out hearsay and popular myth from specific medical fact. You can easily drive yourself crazy if you do not read everything with a healthy index of suspicion and possibly a jaundiced eye, taking no specific fact or claim for granted (even if it comes from a committee of Drs. Lagrone, Boachie-Adjel, Bradford, Bridwell, et al.). This might be a good time to mention that, unfortunately, some early " caveats " -- which were simple misunderstandings, long since acknowledged to be erroneous information -- from the first Internet writings on flatback syndrome are still being recycled, to no one's benefit. Also, some individual scare stories are still being promulgated in what I consider a somewhat reckless manner. So, addressing any potentially nervous feisties: I urge you to stay as calm as possible when reading posts which have a bossy or matriarchal/patriarchal tone of Consummate Expertise (even if these posts are written by a full-feathered de facto Colonel, i.e., someone like me), or which tend to raise one's level of anxiety and worry about this whole business of seeing a spinal surgeon and considering further intervention. If you are suffering adverse effects from previous scoliosis surgery, it's hard enough to deal with the actual situation you are facing right now, in all its medical and existential complexity, without reading about terrible things that happened to other people and warnings that these things may happen to you. Alas, you will probably continue to read occasional alarmist and hair-raising stuff at this site, which reflects the total lack of censorship on the part of your moderators and colonels as well as the particular personal style of a few outspoken members beset by occasional strong passions. I just hope that no one takes anyone else's personal nightmare to heart or otherwise gets shook up or bummed out by some of these anecdotal opinions. I have heard from members in the past who said that they really were freaked by this kind of post and were relieved to get a little balance in a post from someone else. (And I will sure thank you to keep that in mind, if you are a member about to pelt me with something unpleasant ranging from high-decibel protests to rotten tomatoes.) 'Nuff said, I guess. Kathleen, I would implore you once again to tone it down, but I lost that battle way back when! I am sure you know that your post is not in keeping with the culture or spirit of this site, as evidenced by its very first sentence. I really get mad when I read a post like this from you. I don't know why you want to write like this or what you think it will accomplish, but I guess you are going to keep on posting in this vein from time to time. So I must deal with my disappointment, anger, and worry for the sake of newer members and members suffering from especially severe pain and acute anxiety. These are my problems, not yours. I just need you to know that you have gotten on my last nerve once more! So kindly excuse me while I go and pitch a historic hissy and overeat some high-calorie sugary items. Humphhh, / waiting for surgery Jean- you are too young for surgery. Get proper pain management,first and foremost. Keep the pain as minimal as possible and possibly on an anti-depresant as they make the pain meds more effctive. Pain breeds depression, it doesnt have to be boo hoo crying , mine never was i was just a grump and stopped smiling and laughing, i was in unbearable pain.., pain doc, meds dont fight against taking drugs for pain., establish a relationship with a very good revision doctor, third, judge your disease progression by your quality of life, if you can have a decent quality of life albeit on meds you re still NOT ready for revision surgery. In tracking people since 1997 when i had the disease and i had revison in 1998, i am 6 years out as of this october and its not easy. Some revison folks do great, many are not pain free after surgery. I literally was in a wheelchair for two months before surgery as i couldnt stand any longer not even for 10 seconds, i was screaming in pain. i was so deformed in agony too. BUT thats where you should be before yoh leap into this surgery. If any surgeon tells you will be fine great 100%, RUN away. as they are only talking with their egos. There are absolutely no 100%. we all have degrees of remiaming disabilites and problems post revision and its the degree and luck of the surgery. LUCK , you heard me. LUCK and a good surgein still is a crap shoot. so please wait as long as possible. To think you will have your old life back is a drwam that you have to change. You need to accept the here and now and move forward. we can never be the same again ever. someone asked about mobility, yes you lose some more being fused to S1 Then that will strain your Sacro-Iliac joints... no one is mentioning that next stage of the disease progression i bet...no one does. it may just happen. You must treat your body as very precious cargo and the simplest of falls can do the worst neurological damage. i been there done that. I fell six months after revision, just fell over in my bedroom and did irreversible damage and more nerve damage. My surgeon at hopkins Kostuik, someone, damaged my spinal cord and i awoke with horrible nerve pain from the waist down that never existed pre-surgery. i had the worst treatment under the staff at the meyer 8 ward of hopkins hospital. They injured me as well. NOW, I am thankfully upright and can walk miles, with the exception i do aggravate and make worse my SI joint degeneration by climbing steps , any activity actually. Unfortunately i do have to take lots of pain meds and its a constant something but i cope with the care of an excellant pain doctor. I get into a deep warm water pool and do gentle aqua aerobics which strengthen my muscles and helps. My quality of life is good and i am trying for very good but its taken 5 years of struggling post-op revision to get here. Different doctors, other surgeries, hardware removed ect. The revision surgery is not the answer to return anyone to a former life, you will make a new one for yourself. Always have faith and hope and move forward and dont look back or dwell on the i use to do it and i want to do it again. I've often heard the hard part is to accept being stuck like 'this' and having to take meds to do it but you should do whatever it takes to have quality of life. This revision surgery is not THE answer but a necessary evil to stop the worsening of your spine health and it may only be a temporary fix for some of us. We are an unknown for the spine doctors and they are doing their best and thankfully some revision surgeons are outstanding for their revision work and compassionate. Their compassion makes this more bearable knowing someone cares. Make sure you have a doctor that cares about you after the surgery is done..I was dumped by my revision surgeon six months after surgery. i was still in pain and he did his job so i was tossed aside in despair... I am very thankful for my current spine doc, Tom Errico at NYU Med Center 212-263-7182. He is one of the best revision docs.. dont give up hope.. keep looking for ways to improve the quality of your life. wishing you many peaceful moments TwistedSister in NJ 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints, 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones, 2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal; June 2004 severe abdominal wall herniation repair (3rd time!)(from anterior spine surgery) ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST ** Harrington Rod scoliosis people and other post-op multiple spine surgery people may interested in the following website dedicated to Flatback Syndrome and revision/salvage spine surgery... " Salvaged Sisters of Scoliosis " website on Delphi Forums at: http://forums.delphiforums.com/adultscoliosis/messages Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Thanks for your candor. I am inclined to agree on your points. I never saw Kostuik (he's since retired as I understand it) but so far I feel okay with the Hopkins folks, though I have been trained by a suspicious Mom, and I am, of course, looking out for myself. I'm considering the testing at this point to be for informational purposes only and to stay informed about what's happening inside. I don't feel anywhere NEAR badly enough to warrant surgery. I'm not even on pain meds at this point. Just exercise and moderation. Thanks, Twisted, I hope your quality of life is as good as your advice! Jean > Jean- you are too young for surgery. Get proper pain management,first and > foremost. Keep the pain as minimal as possible and possibly on an > anti-depresant as they make the pain meds more effctive. Pain breeds > depression, it doesnt have to be boo hoo crying , mine never was i was just > a grump and stopped smiling and laughing, i was in unbearable pain.., pain > doc, meds dont fight against taking drugs for pain., establish a > relationship with a very good revision doctor, third, judge your disease > progression by your quality of life, if you can have a decent quality of > life albeit on meds you re still NOT ready for revision surgery. In > tracking people since 1997 when i had the disease and i had revison in 1998, > i am 6 years out as of this october and its not easy. Some revison folks do > great, many are not pain free after surgery. I literally was in a > wheelchair for two months before surgery as i couldnt stand any longer not > even for 10 seconds, i was screaming in pain. i was so deformed in agony > too. BUT thats where you should be before yoh leap into this surgery. If > any surgeon tells you will be fine great 100%, RUN away. as they are only > talking with their egos. There are absolutely no 100%. we all have degrees > of remiaming disabilites and problems post revision and its the degree and > luck of the surgery. LUCK , you heard me. LUCK and a good surgein still is > a crap shoot. so please wait as long as possible. To think you will have > your old life back is a drwam that you have to change. You need to accept > the here and now and move forward. we can never be the same again ever. > someone asked about mobility, yes you lose some more being fused to S1 Then > that will strain your Sacro-Iliac joints... no one is mentioning that next > stage of the disease progression i bet...no one does. it may just happen. > You must treat your body as very precious cargo and the simplest of falls > can do the worst neurological damage. i been there done that. I fell six > months after revision, just fell over in my bedroom and did irreversible > damage and more nerve damage. My surgeon at hopkins Kostuik, someone, > damaged my spinal cord and i awoke with horrible nerve pain from the waist > down that never existed pre-surgery. i had the worst treatment under the > staff at the meyer 8 ward of hopkins hospital. They injured me as well. > NOW, I am thankfully upright and can walk miles, with the exception i do > aggravate and make worse my SI joint degeneration by climbing steps , any > activity actually. Unfortunately i do have to take lots of pain meds and its > a constant something but i cope with the care of an excellant pain doctor. I > get into a deep warm water pool and do gentle aqua aerobics which strengthen > my muscles and helps. My quality of life is good and i am trying for very > good but its taken 5 years of struggling post-op revision to get here. > Different doctors, other surgeries, hardware removed ect. The revision > surgery is not the answer to return anyone to a former life, you will make a > new one for yourself. Always have faith and hope and move forward and dont > look back or dwell on the i use to do it and i want to do it again. I've > often heard the hard part is to accept being stuck like 'this' and having to > take meds to do it but you should do whatever it takes to have quality of > life. This revision surgery is not THE answer but a necessary evil to stop > the worsening of your spine health and it may only be a temporary fix for > some of us. We are an unknown for the spine doctors and they are doing their > best and thankfully some revision surgeons are outstanding for their > revision work and compassionate. Their compassion makes this more bearable > knowing someone cares. Make sure you have a doctor that cares about you > after the surgery is done..I was dumped by my revision surgeon six months > after surgery. i was still in pain and he did his job so i was tossed aside > in despair... I am very thankful for my current spine doc, Tom Errico at > NYU Med Center 212-263-7182. He is one of the best revision docs.. dont give > up hope.. keep looking for ways to improve the quality of your life. > wishing you many peaceful moments > TwistedSister in NJ > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback > Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints, > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones, > 2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal; June > 2004 severe abdominal wall herniation repair (3rd time!)(from anterior spine > surgery) > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST ** > Harrington Rod scoliosis people and other post-op multiple spine surgery > people may interested in the following website dedicated to Flatback > Syndrome and revision/salvage spine surgery... " Salvaged Sisters of > Scoliosis " website on Delphi Forums at: > http://forums.delphiforums.com/adultscoliosis/messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Thanks for keeping the balance, , and it is wonderful to hear you writing such coherent and eloquent posts when I'm sure you are marinated in all kinds of magic drugs. I actually had a point a week after I joined the list where I made myself take a break from reading for a few days, not because you all aren't wonderful, but because I didn't have the perspective so soon after my disgnosis to deal with hearing about all of the troubles and uncertainty. But, all the experiences that keep stacking up in my early 20s (most learned from mistakes) are slowly making me wiser and calmer and I was able to put the right spin on things again and return. Even when the posts are scary or opinionated (or BOTH) I still think that being here is a wonderful thing and I value the fact that we all are genuinely trying to help each other. I think most of us are able to remember that we all are speaking from experience and home-grown research and if the docs who dedicate their lives to this aren't omnipotent then OF COURSE neither are we. Good to have someone remind us, though... Jean > IMPORTANT NOTE TO NEW MEMBERS: > > Please bear in mind that this post is one person's highly personal and subjective opinion. It includes some good and perceptive comments but also some very strong and authoritative statements that may not apply to you at all. For instance, you can never assume that you are in for a " next stage " involving S-I progression after revision surgery. Everyone is different; every case is unique; it is totally impossible to conclude anything about someone else's prognosis when you have never even laid eyes on the person, let alone her x-rays, let alone your own board certification in the relevant specialty. Without going into a bunch of details, for instance, I certainly expect no S-I problems following my own fusion to the sacrum. (In brief, my S-I joints are fusing nicely -- and painlessly -- on their own, courtesy of Mother Nature and other variables.) > > Bottom line: It is imperative to sort out hearsay and popular myth from specific medical fact. You can easily drive yourself crazy if you do not read everything with a healthy index of suspicion and possibly a jaundiced eye, taking no specific fact or claim for granted (even if it comes from a committee of Drs. Lagrone, Boachie-Adjel, Bradford, Bridwell, et al.). > > This might be a good time to mention that, unfortunately, some early " caveats " -- which were simple misunderstandings, long since acknowledged to be erroneous information -- from the first Internet writings on flatback syndrome are still being recycled, to no one's benefit. Also, some individual scare stories are still being promulgated in what I consider a somewhat reckless manner. So, addressing any potentially nervous feisties: I urge you to stay as calm as possible when reading posts which have a bossy or matriarchal/ patriarchal tone of Consummate Expertise (even if these posts are written by a full- feathered de facto Colonel, i.e., someone like me), or which tend to raise one's level of anxiety and worry about this whole business of seeing a spinal surgeon and considering further intervention. If you are suffering adverse effects from previous scoliosis surgery, it's hard enough to deal with the actual situation you are facing right now, in all its medical and existential complexity, without reading about terrible things that happened to other people and warnings that these things may happen to you. > > Alas, you will probably continue to read occasional alarmist and hair-raising stuff at this site, which reflects the total lack of censorship on the part of your moderators and colonels as well as the particular personal style of a few outspoken members beset by occasional strong passions. I just hope that no one takes anyone else's personal nightmare to heart or otherwise gets shook up or bummed out by some of these anecdotal opinions. I have heard from members in the past who said that they really were freaked by this kind of post and were relieved to get a little balance in a post from someone else. (And I will sure thank you to keep that in mind, if you are a member about to pelt me with something unpleasant ranging from high-decibel protests to rotten tomatoes.) > > 'Nuff said, I guess. Kathleen, I would implore you once again to tone it down, but I lost that battle way back when! I am sure you know that your post is not in keeping with the culture or spirit of this site, as evidenced by its very first sentence. I really get mad when I read a post like this from you. I don't know why you want to write like this or what you think it will accomplish, but I guess you are going to keep on posting in this vein from time to time. So I must deal with my disappointment, anger, and worry for the sake of newer members and members suffering from especially severe pain and acute anxiety. These are my problems, not yours. I just need you to know that you have gotten on my last nerve once more! So kindly excuse me while I go and pitch a historic hissy and overeat some high-calorie sugary items. > > Humphhh, > > > > / > waiting for surgery > > > Jean- you are too young for surgery. Get proper pain management,first and > foremost. Keep the pain as minimal as possible and possibly on an > anti-depresant as they make the pain meds more effctive. Pain breeds > depression, it doesnt have to be boo hoo crying , mine never was i was just > a grump and stopped smiling and laughing, i was in unbearable pain.., pain > doc, meds dont fight against taking drugs for pain., establish a > relationship with a very good revision doctor, third, judge your disease > progression by your quality of life, if you can have a decent quality of > life albeit on meds you re still NOT ready for revision surgery. In > tracking people since 1997 when i had the disease and i had revison in 1998, > i am 6 years out as of this october and its not easy. Some revison folks do > great, many are not pain free after surgery. I literally was in a > wheelchair for two months before surgery as i couldnt stand any longer not > even for 10 seconds, i was screaming in pain. i was so deformed in agony > too. BUT thats where you should be before yoh leap into this surgery. If > any surgeon tells you will be fine great 100%, RUN away. as they are only > talking with their egos. There are absolutely no 100%. we all have degrees > of remiaming disabilites and problems post revision and its the degree and > luck of the surgery. LUCK , you heard me. LUCK and a good surgein still is > a crap shoot. so please wait as long as possible. To think you will have > your old life back is a drwam that you have to change. You need to accept > the here and now and move forward. we can never be the same again ever. > someone asked about mobility, yes you lose some more being fused to S1 Then > that will strain your Sacro-Iliac joints... no one is mentioning that next > stage of the disease progression i bet...no one does. it may just happen. > You must treat your body as very precious cargo and the simplest of falls > can do the worst neurological damage. i been there done that. I fell six > months after revision, just fell over in my bedroom and did irreversible > damage and more nerve damage. My surgeon at hopkins Kostuik, someone, > damaged my spinal cord and i awoke with horrible nerve pain from the waist > down that never existed pre-surgery. i had the worst treatment under the > staff at the meyer 8 ward of hopkins hospital. They injured me as well. > NOW, I am thankfully upright and can walk miles, with the exception i do > aggravate and make worse my SI joint degeneration by climbing steps , any > activity actually. Unfortunately i do have to take lots of pain meds and its > a constant something but i cope with the care of an excellant pain doctor. I > get into a deep warm water pool and do gentle aqua aerobics which strengthen > my muscles and helps. My quality of life is good and i am trying for very > good but its taken 5 years of struggling post-op revision to get here. > Different doctors, other surgeries, hardware removed ect. The revision > surgery is not the answer to return anyone to a former life, you will make a > new one for yourself. Always have faith and hope and move forward and dont > look back or dwell on the i use to do it and i want to do it again. I've > often heard the hard part is to accept being stuck like 'this' and having to > take meds to do it but you should do whatever it takes to have quality of > life. This revision surgery is not THE answer but a necessary evil to stop > the worsening of your spine health and it may only be a temporary fix for > some of us. We are an unknown for the spine doctors and they are doing their > best and thankfully some revision surgeons are outstanding for their > revision work and compassionate. Their compassion makes this more bearable > knowing someone cares. Make sure you have a doctor that cares about you > after the surgery is done..I was dumped by my revision surgeon six months > after surgery. i was still in pain and he did his job so i was tossed aside > in despair... I am very thankful for my current spine doc, Tom Errico at > NYU Med Center 212-263-7182. He is one of the best revision docs.. dont give > up hope.. keep looking for ways to improve the quality of your life. > wishing you many peaceful moments > TwistedSister in NJ > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback > Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints, > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones, > 2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal; June > 2004 severe abdominal wall herniation repair (3rd time!)(from anterior spine > surgery) > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST ** > Harrington Rod scoliosis people and other post-op multiple spine surgery > people may interested in the following website dedicated to Flatback > Syndrome and revision/salvage spine surgery... " Salvaged Sisters of > Scoliosis " website on Delphi Forums at: > http://forums.delphiforums.com/adultscoliosis/messages > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 Hello my name is . My son has choloesteatoma and is waiting for his surgery. Is there anything I should look out for. It been years that he had this problem and no one found the problem until now. I'm glad to know that i was not going crazy. He would have problems hearing and I was told it was only wax buildup or a ear infection. Thank god for the doctor who actually to took time to listen to me . Quote Link to comment Share on other sites More sharing options...
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