Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Dear Joyce, I also will have revision surgery later this year. I am 57 and had my fusion at 13 using only my right hip top. Although I've only had pain in that particular spot the last few years, I too wanted to avoid the use of my left hip this time if I could. Of my 3 expert opinions only one wanted to use the left hip. Did you get other opinions? I couldn't urge you enough if you haven't. The 3 different treatments were drastically different. I opted for what I think will be the least brutal because of my age and having fibromyalgia. The other two opinions would use cadaver bone and the rib section that was cut away from the re-section for fusion. I, too, have problems standing for long lengths of time and late afternoon and evening are my worse times. My upper curve is 100. I have avoided this surgery since I was told it was needed for 19 years. My lungs are now at 48% capacity and I have osteopenia. Although I'd like to " run " from this surgery, my timeframe is getting very small. After being bed ridden with stabbing right hip pain that didn't allow any weight on my upper spine last year for 5 weeks, I realized the urgency of stabilizing my spine. I wouldn't wish that fate on a politician! I don't want the pain to happen again, so I'm walking on eggshells until this surgery finally occurs. I dread it, but know it's needed. Neurontin is the anti-convulsion med that allowed me to sit up, stand, and walk again. But it is not good for bone health long term-so it has a limited time use for me. Write me privately or here if you'd like. I live in central California. Looks like we are walking the same path. Jolene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Just curious about something...were you able to touch your toes before surgery? I had my Harrington rod implanted back in 1976 at age 15, and I can still touch my toes, as always. I'm 5'6". But I had taken ballet, tap and gymastic lessons from age 2 to 4, and I have always been told that I am very flexible. I think it also depends on where the fusion is exactly. My fusion stops at L3. And I never received PT, nor was I instructed to do any kind of exercises after my surgery. The first time I received PT was just a couple of years ago, after I requested it. Just wanted to share that with you. So don't feel too guilty about not doing the exercises...the inability to touch your toes may not be your fault at all. In a message dated 5/27/06 10:11:35 P.M. Central Daylight Time, ellen_kear@... writes: Dear Amy, I was your son's age when I had my two rodimplant (after having a smaller one put in a about 2years before) I am only going to stess one thing, whenthe doctors tell him to exercise using the rubber bandlike red and blue things for pt then use them-that isthe only thing i didn't like and now i feel bad aboutthat. I still can't touch my toes and I am only 5ft 2in. other than that and the pain, which was bad (thesecond time around) My parents always said they wanted me to be (after thefirst surgery)in a tent since from two rooms away theyheard me tossing and turning but other than needinghelp to get up and down a few months it was better.give him pain killers (tylenol or advil)at first it felt like i was carrying bricks but aftera few months it got better. I had my surgeries atGeisinger in Danville PA and Doctor Parenti was/ isstill my doctor. Good Luck and god bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 I could touch my toes after surgery. It was the first clue that something was wrong! > > > Just curious about something...were you able to touch your toes before > surgery? I had my Harrington rod implanted back in 1976 at age 15, and I can still > touch my toes, as always. I'm 5'6 " . But I had taken ballet, tap and gymastic > lessons from age 2 to 4, and I have always been told that I am very > flexible. I think it also depends on where the fusion is exactly. My fusion stops at > L3. And I never received PT, nor was I instructed to do any kind of exercises > after my surgery. The first time I received PT was just a couple of years > ago, after I requested it. Just wanted to share that with you. So don't feel > too guilty about not doing the exercises...the inability to touch your toes may > not be your fault at all. > > > > In a message dated 5/27/06 10:11:35 P.M. Central Daylight Time, > ellen_kear@... writes: > > Dear Amy, I was your son's age when I had my two rod > implant (after having a smaller one put in a about 2 > years before) I am only going to stess one thing, when > the doctors tell him to exercise using the rubber band > like red and blue things for pt then use them-that is > the only thing i didn't like and now i feel bad about > that. I still can't touch my toes and I am only 5ft 2 > in. other than that and the pain, which was bad (the > second time around) > > My parents always said they wanted me to be (after the > first surgery)in a tent since from two rooms away they > heard me tossing and turning but other than needing > help to get up and down a few months it was better. > > give him pain killers (tylenol or advil) > > at first it felt like i was carrying bricks but after > a few months it got better. I had my surgeries at > Geisinger in Danville PA and Doctor Parenti was/ is > still my doctor. > > Good Luck and god bless. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 what are the other options? --- SB <bahadreama@...> wrote: > If my son's doctor was really planning to use > Harrington Rods, I > personally would find a different doctor. I have a > hard time > imagining that there are really doctors who would > still consider using > them. > > > > > > > my name is amy and i have a 14 year old son who > has scoliosis. His > > dr. said it is time for surgery, using the > harrington rods. I would > > like to know if some would be willing to tell me > about your success > > and your problems that you have had with this > procedure. This > surgery > > has me so scared for my son. I am terrified of > nerve damage and scar > > tissue that might cause problems later on. what do > we have to look > > forward to? thanks to all > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 here is an article that describes all the various types of instrumentation. http://www.scoliosis.org/resources/medicalupdates/instrumentationsyst ems.php > > > > > > my name is amy and i have a 14 year old son who > > has scoliosis. His > > > dr. said it is time for surgery, using the > > harrington rods. I would > > > like to know if some would be willing to tell me > > about your success > > > and your problems that you have had with this > > procedure. This > > surgery > > > has me so scared for my son. I am terrified of > > nerve damage and scar > > > tissue that might cause problems later on. what do > > we have to look > > > forward to? thanks to all > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 mt doctor told me that I would not ever be able to bend forward and touch my toes after surgery. The first time after surgery that he asked me to bend forward, I asked him if he wanted me to touch my toes. He chuckled and said I could try. When I was able to, he wrinkled up his forehead and said there must be something loose. I opted not to have him fix it, never knowing until years later that my back had failed to fuse properly and that one of the rods was broken. I still wonder if it was partly my fault for propping myself on my side with my foot because the pillow would always slide out from under me. I am only partly reassured that the loss of lordosis was destined yo cause long term problems regardless of what I did or did not do. But, gee, who knew that would also be a bad time to be sneaking smokes? (but surely just a few hours on saturday night whle my parents played dominos couldn't have been THAT bad?) > > > Just curious about something...were you able to touch your toes before > surgery? I had my Harrington rod implanted back in 1976 at age 15, and I can still > touch my toes, as always. I'm 5'6 " . But I had taken ballet, tap and gymastic > lessons from age 2 to 4, and I have always been told that I am very > flexible. I think it also depends on where the fusion is exactly. My fusion stops at > L3. And I never received PT, nor was I instructed to do any kind of exercises > after my surgery. The first time I received PT was just a couple of years > ago, after I requested it. Just wanted to share that with you. So don't feel > too guilty about not doing the exercises...the inability to touch your toes may > not be your fault at all. > > > > In a message dated 5/27/06 10:11:35 P.M. Central Daylight Time, > ellen_kear@... writes: > > Dear Amy, I was your son's age when I had my two rod > implant (after having a smaller one put in a about 2 > years before) I am only going to stess one thing, when > the doctors tell him to exercise using the rubber band > like red and blue things for pt then use them-that is > the only thing i didn't like and now i feel bad about > that. I still can't touch my toes and I am only 5ft 2 > in. other than that and the pain, which was bad (the > second time around) > > My parents always said they wanted me to be (after the > first surgery)in a tent since from two rooms away they > heard me tossing and turning but other than needing > help to get up and down a few months it was better. > > give him pain killers (tylenol or advil) > > at first it felt like i was carrying bricks but after > a few months it got better. I had my surgeries at > Geisinger in Danville PA and Doctor Parenti was/ is > still my doctor. > > Good Luck and god bless. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 I am only partly reassured that the loss of > lordosis was destined yo cause long term problems regardless of what > I did or did not do. But, gee, who knew that would also be a bad > time to be sneaking smokes? > I have the " ideal " result of my spinal fusion. I do not have Harringtone rods I have Luque rods. I am fused from T4-L4 and have always been able to touch my toes. Won't be for long come this summer. I believe loss of lordosis was bound to happen. Are there any posted statistics on the rate of loss of lordosis? Wouldn't everyone with the same type of surgery from the same time frame experience a loss of lordosis? Also given that DD has scoliosis could some one point me to a site that explains how the procedure is different so as to prevent loss of lordosis. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 That is a good idea to find statistics but remember not all of us have osteoperosis that runs genetically and i just wonder if this has anything to do with scoliosis. --- leominsterhsg <leominsterhsg@...> wrote: > I am only partly reassured that the loss of > > lordosis was destined yo cause long term problems > regardless of what > > I did or did not do. But, gee, who knew that > would also be a bad > > time to be sneaking smokes? > > > > I have the " ideal " result of my spinal fusion. I do > not have > Harringtone rods I have Luque rods. I am fused from > T4-L4 and have > always been able to touch my toes. Won't be for long > come this summer. > > I believe loss of lordosis was bound to happen. Are > there any posted > statistics on the rate of loss of lordosis? Wouldn't > everyone with the > same type of surgery from the same time frame > experience a loss of > lordosis? Also given that DD has scoliosis could > some one point me to > a site that explains how the procedure is different > so as to prevent > loss of lordosis. > > Thanks. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 thanks .I was informed that I may possibly be in the wrong group, that harrington rods are seldom used today. I don't exactly remember who mentioned harrington rods to me, it could have been my doctor or it could have been from all the stuff i have been reading. i will have to clarify that with his dr. thanks, amy Re: scoliosis surgery mt doctor told me that I would not ever be able to bend forward and touch my toes after surgery. The first time after surgery that he asked me to bend forward, I asked him if he wanted me to touch my toes. He chuckled and said I could try. When I was able to, he wrinkled up his forehead and said there must be something loose. I opted not to have him fix it, never knowing until years later that my back had failed to fuse properly and that one of the rods was broken. I still wonder if it was partly my fault for propping myself on my side with my foot because the pillow would always slide out from under me. I am only partly reassured that the loss of lordosis was destined yo cause long term problems regardless of what I did or did not do. But, gee, who knew that would also be a bad time to be sneaking smokes? (but surely just a few hours on saturday night whle my parents played dominos couldn't have been THAT bad?)>> > Just curious about something...were you able to touch your toes before > surgery? I had my Harrington rod implanted back in 1976 at age 15, and I can still > touch my toes, as always. I'm 5'6". But I had taken ballet, tap and gymastic > lessons from age 2 to 4, and I have always been told that I am very > flexible. I think it also depends on where the fusion is exactly. My fusion stops at > L3. And I never received PT, nor was I instructed to do any kind of exercises > after my surgery. The first time I received PT was just a couple of years > ago, after I requested it. Just wanted to share that with you. So don't feel > too guilty about not doing the exercises...the inability to touch your toes may > not be your fault at all.> > > > In a message dated 5/27/06 10:11:35 P.M. Central Daylight Time, > ellen_kear@... writes:> > Dear Amy, I was your son's age when I had my two rod> implant (after having a smaller one put in a about 2> years before) I am only going to stess one thing, when> the doctors tell him to exercise using the rubber band> like red and blue things for pt then use them-that is> the only thing i didn't like and now i feel bad about> that. I still can't touch my toes and I am only 5ft 2> in. other than that and the pain, which was bad (the> second time around) > > My parents always said they wanted me to be (after the> first surgery)in a tent since from two rooms away they> heard me tossing and turning but other than needing> help to get up and down a few months it was better.> > give him pain killers (tylenol or advil)> > at first it felt like i was carrying bricks but after> a few months it got better. I had my surgeries at> Geisinger in Danville PA and Doctor Parenti was/ is> still my doctor. > > Good Luck and god bless.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 thanks Re: scoliosis surgery here is an article that describes all the various types of instrumentation. http://www.scoliosis.org/resources/medicalupdates/instrumentationsystems.php--- In , Ellen Kear <ellen_kear@...> wrote:>> what are the other options? > > > --- SB <bahadreama@...> wrote:> > > If my son's doctor was really planning to use> > Harrington Rods, I > > personally would find a different doctor. I have a> > hard time > > imagining that there are really doctors who would> > still consider using > > them.> > > > > > > > >> > > my name is amy and i have a 14 year old son who> > has scoliosis. His > > > dr. said it is time for surgery, using the> > harrington rods. I would > > > like to know if some would be willing to tell me> > about your success > > > and your problems that you have had with this> > procedure. This > > surgery > > > has me so scared for my son. I am terrified of> > nerve damage and scar > > > tissue that might cause problems later on. what do> > we have to look > > > forward to? thanks to all> > >> > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 I am one of the 'lucky' folks who did not develop the loss of lordosis gradually. I had a lumpy back where my beautiful curves used to be immediately upon getting out of the cast. I have not been able to stand up straight since the original surgery. I guess I am lucky that I was relatively pain-free for so long. > > I am only partly reassured that the loss of > > lordosis was destined yo cause long term problems regardless of what > > I did or did not do. But, gee, who knew that would also be a bad > > time to be sneaking smokes? > > > > I have the " ideal " result of my spinal fusion. I do not have > Harringtone rods I have Luque rods. I am fused from T4-L4 and have > always been able to touch my toes. Won't be for long come this summer. > > I believe loss of lordosis was bound to happen. Are there any posted > statistics on the rate of loss of lordosis? Wouldn't everyone with the > same type of surgery from the same time frame experience a loss of > lordosis? Also given that DD has scoliosis could some one point me to > a site that explains how the procedure is different so as to prevent > loss of lordosis. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 I would agree with bahadreama here--I really didn't think any doctors were using these any more. Harrington Rods are what got all of us " flatbackers " where we are today--with Fixed Sagittal Imbalance or Flatback. I do know they use multiple rods today so they can keep the natural sideways curves of your back. That's what you need to check out--more information, and possibly a second or third opinion. Carol (CA) > > > > my name is amy and i have a 14 year old son who has scoliosis. His > > dr. said it is time for surgery, using the harrington rods. I would > > like to know if some would be willing to tell me about your success > > and your problems that you have had with this procedure. This > surgery > > has me so scared for my son. I am terrified of nerve damage and scar > > tissue that might cause problems later on. what do we have to look > > forward to? thanks to all > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 The fact that a person can touch their toes after surgery doesn't necessarily mean that something is wrong. Unfortunately, in your case it did. I am fused to L4 and have always been able to touch my toes (until recently when the sciatic pain has increased). In fact, I was re-reading some letters yesterday that my surgeon sent me and my parents when we had asked him some questions prior to my surgery in 1974. One of the things he stated in one letter is that most people can touch their toes after surgery, and lead fairly normal lives. I was always flexible enough to touch my toes, and I never had any physical therapy after surgery. (Of course, I could only do that after I was out of the body cast I had on for 9 mos.!!) I know that my spine fused just fine because I had a bone scan done several years after surgery, and everything was A-OK. Carol (CA) > > > > > > Just curious about something...were you able to touch your toes > before > > surgery? I had my Harrington rod implanted back in 1976 at age 15, > and I can still > > touch my toes, as always. I'm 5'6 " . But I had taken ballet, tap > and gymastic > > lessons from age 2 to 4, and I have always been told that I am > very > > flexible. I think it also depends on where the fusion is exactly. > My fusion stops at > > L3. And I never received PT, nor was I instructed to do any kind > of exercises > > after my surgery. The first time I received PT was just a couple > of years > > ago, after I requested it. Just wanted to share that with you. So > don't feel > > too guilty about not doing the exercises...the inability to touch > your toes may > > not be your fault at all. > > > > > > > > In a message dated 5/27/06 10:11:35 P.M. Central Daylight Time, > > ellen_kear@ writes: > > > > Dear Amy, I was your son's age when I had my two rod > > implant (after having a smaller one put in a about 2 > > years before) I am only going to stess one thing, when > > the doctors tell him to exercise using the rubber band > > like red and blue things for pt then use them-that is > > the only thing i didn't like and now i feel bad about > > that. I still can't touch my toes and I am only 5ft 2 > > in. other than that and the pain, which was bad (the > > second time around) > > > > My parents always said they wanted me to be (after the > > first surgery)in a tent since from two rooms away they > > heard me tossing and turning but other than needing > > help to get up and down a few months it was better. > > > > give him pain killers (tylenol or advil) > > > > at first it felt like i was carrying bricks but after > > a few months it got better. I had my surgeries at > > Geisinger in Danville PA and Doctor Parenti was/ is > > still my doctor. > > > > Good Luck and god bless. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 thanks, i called my son's dr. this morning and left a message asking him to let me know what type of hardware he is going to be using. i want to research this from all aspects before my son has his surgery. it is very possible the name harrington just got stuck in my head while reading info on scoliosis surgery. Re: scoliosis surgery I would agree with bahadreama here--I really didn't think any doctors were using these any more. Harrington Rods are what got all of us "flatbackers" where we are today--with Fixed Sagittal Imbalance or Flatback. I do know they use multiple rods today so they can keep the natural sideways curves of your back. That's what you need to check out--more information, and possibly a second or third opinion.Carol (CA)> >> > my name is amy and i have a 14 year old son who has scoliosis. His > > dr. said it is time for surgery, using the harrington rods. I would > > like to know if some would be willing to tell me about your success > > and your problems that you have had with this procedure. This > surgery > > has me so scared for my son. I am terrified of nerve damage and scar > > tissue that might cause problems later on. what do we have to look > > forward to? thanks to all> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 This august i have an apt with dr. Parenti, would you mind if i printed my copies out of these longer statements so I can ask him more about it and get back to you? --- Carol <dcvaughan@...> wrote: > I would agree with bahadreama here--I really didn't > think any doctors > were using these any more. Harrington Rods are what > got all of > us " flatbackers " where we are today--with Fixed > Sagittal Imbalance or > Flatback. I do know they use multiple rods today so > they can keep the > natural sideways curves of your back. That's what > you need to check > out--more information, and possibly a second or > third opinion. > > Carol (CA) > > > > > > > > > my name is amy and i have a 14 year old son who > has scoliosis. > His > > > dr. said it is time for surgery, using the > harrington rods. I > would > > > like to know if some would be willing to tell me > about your > success > > > and your problems that you have had with this > procedure. This > > surgery > > > has me so scared for my son. I am terrified of > nerve damage and > scar > > > tissue that might cause problems later on. what > do we have to > look > > > forward to? thanks to all > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Forgive me, but I am having a little trouble following parts of the discussion here. The letter being answered does not seem to refer to osteoporosis at all, and I am not clear who " DD " is. Maybe I have simply missed some intervening correspondence? Ironically, from time to time, I urge group members to make their letters as succinct as possible -- avoid dragging a trail of irrelevant posts along behind the current one -- but in this case, maybe a little MORE info. would have been helpful! Regarding a procedure that is performed differently to prevent loss of lordosis, I would be glad to try and answer this, but I am not clear what procedure is being referenced. Osteoporosis, to return to that topic for a moment, does seem to run in families -- there is a strong genetic componenent, to the best of my knowledge -- and, at least anecdotally, I have the sense that severe scoliosis in women correlates with early osteoporosis; but I do not have data immediately at hand to back this up. OK, now for the part I can address (at least partially). leominsterhsg wrote: I do > > not have > > Harringtone rods I have Luque rods. I am fused from > > T4-L4 and have > > always been able to touch my toes. Won't be for long > > come this summer. > > > > I believe loss of lordosis was bound to happen. leominsterhsg, I frankly am not entirely sure that loss of lordosis was, in fact, bound to happen in your case. As you probably know, Luque rods were a fairly early alternative to and improvement on the comparatively primitive Harrington distraction rod. (At one time, -- who had Luque rods installed himself -- wrote to clarify what Luque rods actually are. You can probably find that correspondence by running a search in the messages section at the Feisty site. Some of us had Luque rods confused with Luque wires, which are only one component of the Luque system. For instance, I myself had a Harrington rod implanted, but with Luque wires used for additional fixation - just to confuse everyone totally!) At any rate, if you had the classical Luque implantation system -- the whole works -- you should be able to see a series of L-shaped rods on your spinal films: two little L-rods attached to each vertebra involved. Your surgeon should have been able to accomplish some sagittal contouring with these little, bendable Luque rods -- ideally, preserving or improving your sagittal balance and preventing loss of lordosis. This was the big breakthrough, the use of " segmental " instrumentation -- i.e., instrumentation designed to be used at each individual segment or level of the fusion. It enabled the surgeon to accomplish some very precise corrective maneuvers, e.g., " derotation " of vertebrae and something known as " apical translation. " Not only did the Luque system -- and other early segmental systems such as the Dwyer and the Zielke systems -- allow both coronal and sagittal plane correction, reportedly with preservation of normal lordosis, but they had other advantages as well, including stronger and more stable spinal fixation. Thus I'll bet you managed to avoid the unwieldy post-op plaster casts some of us had to put up with in the 1960s, thanks to the excellent internal fixation provided by your Luque instrumentation. But to repeat my previous rumination . . . .I really can not see why loss or lordosis " should " have occurred in your case. If you did lose some lordosis, I wonder if your current surgeon might be able to shed some light on how this might have come about? You also wrote: Are > > there any posted > > statistics on the rate of loss of lordosis? Don't I wish! (There may be, but I have not yet dug them up, much to my regret.) As it happens, I am researching this very question right now, sorting through various conflicting statistics derived in various ways. To me it is THE key question in the epidemiology of flatback syndrome --just how many of us are there, anyway? I hope you will let me know if you come up with any data on this! (Among other things, some reasonable ballpark figure would be incredibly helpful to me in estimating the possible readership for a book on our generation's experience with scoliosis surgery and its discontents. You go on to say Wouldn't > > everyone with the > > same type of surgery from the same time frame > > experience a loss of > > lordosis? I think it's fair to say that everyone with Harrington instrumentation extending into the low lumbar area would be at pretty high risk. There seem to be a certain number of people with Harrington rods -- especially Harrington rods terminating at T12 or higher -- who are doing ok some years after their surgery. There are others like me whose Harrington rods extended only to about L3 who have nontheless developed severe progressive flatback syndrome. It certainly would be great to have more data on the whole Harrington rod generation. It would also be very helpful to know how lots of other people like you are faring overall with their somewhat less retro segmental systems. As for those of us who have now acquired Cotrel-Doubousset (C-D) rods, Isola rods, adjunctive pedicle screws, and such -- or who have undergone the increasingly fashionable anterior or anterior- posterior surgeries -- we may need to wait another decade or three for all our results to be in. Let's face it, as this group has discussed from time to time in the past, we are a generation of guinea pigs -- prime candidates for each new and promising surgical innovation or gizmo that comes down the Scoliosis Interstate. And some of the missing data that we (and our doctors too, no doubt) would find so useful can only come from us -- as we continue to wend our way through adulthood with our signature feisty verve and our awesome bionic backs . . . Best, > > > I am only partly reassured that the loss of > > > lordosis was destined yo cause long term problems > > regardless of what > > > I did or did not do. But, gee, who knew that > > would also be a bad > > > time to be sneaking smokes? > > > > > > > I have the " ideal " result of my spinal fusion. I do > > not have > > Harringtone rods I have Luque rods. I am fused from > > T4-L4 and have > > always been able to touch my toes. Won't be for long > > come this summer. > > > > I believe loss of lordosis was bound to happen. Are > > there any posted > > statistics on the rate of loss of lordosis? Wouldn't > > everyone with the > > same type of surgery from the same time frame > > experience a loss of > > lordosis? Also given that DD has scoliosis could > > some one point me to > > a site that explains how the procedure is different > > so as to prevent > > loss of lordosis. > > > > Thanks. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 > > At any rate, if you had the classical Luque implantation system -- > the whole works -- you should be able to see a series of L-shaped > rods on your spinal films: two little L-rods attached to each > vertebra involved. Yes this is exactly what I have but they are pin straight. No contouring or lordosis. Thus I'll > bet you managed to avoid the unwieldy post-op plaster casts some of > us had to put up with in the 1960s, thanks to the excellent internal > fixation provided by your Luque instrumentation. > Yes, I did avoid the cast afterward. > But to repeat my previous rumination . . . .I really can not see why > loss or lordosis " should " have occurred in your case. If you did > lose some lordosis, I wonder if your current surgeon might be able > to shed some light on how this might have come about? > I'll ask at my next appointment in 5 weeks. It could be the over all inferior connective tissue that I have. Also I continue to twist as I bet we have all been told " fusion is not a cure for scoliosis but rather a treatment " . I think it could also be due to the fact that I was 11 when I had the surgery. A few years of growth and twisting makes for some yucky stuff. I was also never kind to my back. I lifted WAY too many things with little regard to my limitations. You know how teens feel rather invinsable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 DD was Dear Daughter but I'll just say my 9 year old daughter has scoliosis. She also has pectus excavatum (or use to becuase she had surgery for it in April). I know there is a corolation of pectus excavatum and scoliosis and Marfan. Has any one ever heard of a copper deffitiency causing Scoliosis? It was mentioned to me a while ago by some one online but I did not really look into it too much. All I could find was that copper deffitiency looks like Marfan syndrome. http://www.ctds.info/marfan_syndrome.html I wasn't sure if any one else had heard of this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 I am so sorry to hear about your Dear Daughter. It sounds as if she -- and you -- are facing an especially difficult and complex situation. No, I have not heard of any research implicating copper deficiency in scoliosis. To anyone reading this reply: Please note that the link provided leads to a nonmedical website. The author(s)--to their credit, I would say -- note in their disclaimer that they are not doctors. While we try to be reasonably open-minded here at the Feisty forum, I also try to caution people about the mass of medically dubious information you can run into on the Web! There is no doubt at all that we need much more research into the causes of scoliosis. Unfortunately this area has just not gotten the kind of funding many of us would wish to see. I seem to recall that there is a summary of research into causes -- such as it is! -- in the " Medical Updates " section of the National Scoliosis Foundation site. One finding that sticks in my mind (for what it's worth) is some sort of linkage with the X chromosome which I believe emerged from the Human Genome Project. I hope you will keep us posted on your daughter's situation. Best, > > DD was Dear Daughter but I'll just say my 9 year old daughter has > scoliosis. She also has pectus excavatum (or use to becuase she had > surgery for it in April). I know there is a corolation of pectus > excavatum and scoliosis and Marfan. > > Has any one ever heard of a copper deffitiency causing Scoliosis? It > was mentioned to me a while ago by some one online but I did not > really look into it too much. All I could find was that copper > deffitiency looks like Marfan syndrome. > http://www.ctds.info/marfan_syndrome.html > > I wasn't sure if any one else had heard of this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 perhaps my surgeon thought I shouldn't be able to touch my toes because I have a third rod going across my pelvis and I was supposedly fused to S1. one doctor I saw when I first started having pain 12 years ago said that my hip joints were incredibly flexible. But, I also did gymnastics before surgery (and in fact did back walkovers all the way down the hall the night before surgery). It has only been in the last year or two that I can't touch my toes anymore -- probably because my stomach gets in the way. One other comment that has come to mind when reading about the different rod systems -- I met a guy who had luque rods in the late 1980s. I felt very sorry for him because he was in horrendous pain and unable to work. At the time, I felt very lucky that I had Harrington Rods instead. > > The fact that a person can touch their toes after surgery doesn't > necessarily mean that something is wrong. Unfortunately, in your case > it did. I am fused to L4 and have always been able to touch my toes > (until recently when the sciatic pain has increased). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Hi I am 45 years old. I am scheduled for surgery on two dates 09-03-08 and 09-08-08. The first surgery will be approx. 10 hours and the second could be the same but it is less stress to do two surgeries. I am just very scared but yet exited I may finally be " normal " spine wise. I have a 16 year old daughter who is ok with me having the surgery. Can I please ask for some assurance that I am doing the right thing. Thanks to all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Hi, just read your posting and had to reply. I am a 62 year old woman who had surgery in January at -Jewish Hospital in St. Louis. Like you, I had two separate surgeries - they were both appromately 8 hrs each. These were my 5th & 6th surgeries. I had two broken rods and what is known as flatback syndrome. I could not stand up straight. I could not walk without a cane or a walker depending on how far I was going or whether or not I had to carry packages. You didn't mention the degree of your curve or the types of problems you are having, but I assume, that in order for the doctor to recommend surgery,it is progressive or above 45 degrees. I can't tell you that the surgery isn't painful and I was scared every time I had surgery. However , I am now able to walk without a cane, and I am standing very straight. All I can tell you is it was worth every pain. If you are having half the problems that I had, having the surgerywill be much worth it. I wish you luck and will pray for you that you feel that you are doing the right thing - It did help me. Please let me know how you are doing. God Bless. y > > Hi I am 45 years old. I am scheduled for surgery on two dates 09-03-08 > and 09-08-08. The first surgery will be approx. 10 hours and the second > could be the same but it is less stress to do two surgeries. I am just > very scared but yet exited I may finally be " normal " spine wise. I have > a 16 year old daughter who is ok with me having the surgery. Can I > please ask for some assurance that I am doing the right thing. Thanks > to all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2011 Report Share Posted May 29, 2011 Hi, Pearl - Wow, next month is coming up very soon! I expect you have a mixture of feelings and many concerns. It took me four years to get all my ducks in a row for revision surgery. Once it was definitely a go, I was relieved -- hopeful -- exhausted -- anxious -- terrified . . . . Congratulations on committing to this major step. I expect if you are like most of us, this is really going to change your life for the better. I would try to take it a step at a time and a day at a time. We are all different and have our individually unique experiences with the surgery, but in general, be prepared for a somewhat long recovery. After the first, worst two days or so you should be feeling tons better, and after that you will progress more gradually, with a generally upward trend. I think the best advice anyone could have given me was to be very kind and patient with myself, starting with the pre-op period; to be prepared for things to go wrong here an there; to especially be prepared to stand up for myself with the occasional ignorant resident or misinformed nurse; and, if at all possible, to have a very close family member or friend with me in the hospital for at least the first couple days, preferably staying with me in my room 24/7. This person should have the mission of being your staunch support and relentless advocate. If you are in a great deal of pain, you may still be simultaneously groggy and likely to doze off, paradoxical as that may sound -- so your companion should be prepared to push the button on your bedside morphine pump when you are due for a bolus of pain relief but are asleep. Otherwise you may lose some slight cumulative effect of the medication and wake up in more pain than you need to be suffering. In case you haven't seen it, there is a document in the Files section at the Feist website -- about the third from the bottom in the list of files--with the caption " what goes to the hospital. " Although this document was put together in 2005, it is still highly relevant, I believe. It is a collection of various members' recommendations re preparing for hospitalization and mentions many experiences they had in the hospital, as well as what they found useful to take with them when they went to be admitted. Do you know what part of your spine will be involved? If, as part of the surgery, you are being fused for the first time to the level of the sacrum, you may have a bit more to adjust to than if the fusion terminates higher up, i.e., in the lumbar region. For me it was somewhat distressing at the very beginning to realize how much more limited I was. Other people were still putting my socks on for me for weeks after my surgery, which felt kind of infantilizing, although I tried not to let it get to me. I have trouble in general asking for help with anything -- very stubborn that way -- and I wish I had psyched myself up a little better for some short-term enforced dependency and helplessness. It really is short-lived, and you become increasingly self-sufficient and comfortable in your " new " body. The hospital should provide you with basic gadgets for helping yourself to get dressed and perhaps perform other basic self-care activities that may be slightly awkward right after surgery. If not, they should at least recommend somewhere to get these items. You may want to make sure of this before your admission, especially if your fusion will extend to S-1. If you are going to be wearing a thoracolumbar orthotic device for a while after surgery, you will definitely want to go into the hospital with some of those ribbed sleeveless T's made by Jockey and others -- preferably 100% cotton -- to put between your skin and the brace. I think the document I referenced has other ideas for the best kind of " wardrobe " you may want handy, especially for PT. Please feel free to ask more specific questions -- and I urge Feisty members who have been through revision surgery to chime in with any hot tips you might have for Pearl. Bravo, Pearl! Please keep us posted as the date approaches. Best, > > > I am having my first scoliosis surgery next month at the Hospital for Joint > Diseases. Does anyone have any advice regarding preparation? > > Pearl > Quote Link to comment Share on other sites More sharing options...
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