Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 My nephew's rods broke. He had the whole spine done, I think just posterior, and 2 years later his curve was back and he found out the rods were broken and he hadn't fused on several levels. He had revision, and now 6 or so years later he's all good. So I guess it's all about whether or not the fusion takes. I'm really nervous now with this deal about having hepatitis c. My dr said having surgery is not a problem and to have an ultrasound of my liver when I'm in the hospital. But jeez, it's bad enough having to deal with scoliosis, but now this. And I have no way of knowing how I got it. Re: Contemplating Surgery for my Scoliosis Also, Daws, A couple years after my surgery the doctor was discussing surgery to remove the rod. We'd never heard of such and were not told in the beginning that removal was ever an option. So, the next appointment a few months later my father gets off work. He only missed work the days of my surgeries (2 open-heart & one back), so him getting off work was a major important occasion. Well, we go to the hospital 80 minutes away & the doctor said something like 'the bone has grown around the rod; it can't be removed now.' I don't know if that's actually what he said; I don't remember it verbatim. He said it in a manner that was almost insulting. My mother & I had both heard the same thing during the previous doctor visit. Now here he was saying that he was not, no never gonna remove it. He never brought it up again. I saw him annually for another 10 years. Then one year I called & made an appointment to see him. Got off work myself because I was now grown & in my mid-to-late 20s...drove all the way to the hospital only to be told that he'd retired/quit- I can't remember which. I was po'd that I'd taken all day off work & wasted nearly 3 hours in traffic going to & from and no-one had bothered to call me & tell me my appt was cancelled. As I talked with the office staff I asked if there was another doctor seeing his patients since I had an appointment, and they simply said 'no.' This is a major medical facility in our state. A hospital where ppl are usually life-flighted or transported when local hospitals can't help. A university hospital. For them not to have an orthopedist on staff & not to call & inform me of the cancellation/ change whatever it happened to be...was rude, improper, and so many other things. I don't know anyone personally who has had their rod removed. I don't know anyone whose rod has broken. All the girls I know have harrington rods. We're all in our late 30s early 40s now. They all got better corrections than I did because their curves were not as large. Also, the other girls had their surgeries done around ages 14-16 and mine was done at age 11. They wore the milwaukee brace fewer number of years due to being diagnosed in their teens whereas I was diagnosed at age 7. ~Moonbeam ____________ _________ _________ _________ _________ _________ _ Looking for last minute shopping deals? Find them fast with Search. http://tools. search.. com/newsearch/ category. php?category= shopping ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 I'm 57 as well !! I haven't heard any stats on curves. I've said before that I am ashamedly passive about my care at times. I look for the best person and turn myself over to him/her. I think it has to do with stress maintenance. My way of dealing with things. I heard one dr call my curve a teacup handle. I had a lot of rotation, a whole lot. first had problems because of discs " falling " out of place at the bottom of the curve, just as it was about to go into the straight base, if that makes any sense. I only had one measurement given me- a 65 degree curve before surgery. If it is true that some of us have a curve because of polio, it makes sense that the curve would worsen with age because of general atrophy of muscles with age. The thing is, when I was first pushed to see a surgeon by a chiropractor, it was a general ortho surgeon. He specialized in spine stuff, but not scoliosis. He did, however, attempt a few scoliosis surgeries a year. He told me I would be out of work for a year, possibly in a body cast and that he couldn't improve the curve, only stop the progression. I was 43 years old at that time. I went home and started exercising. I went at it with a real determination. So much so that I just knew that not only would my curve not be worse, I just knew it would actually be better. I had a big " gym " in the bedroom, with the different stations with the pulleys and weights. We didn't have room for it- we climbed around it for months and months. I had an appt one year later, went to the same office, signed in, only to be told that the dr had opened a new practice across town, with a few other spine drs. I had not been notified. I was so frustrated that I had taken off work, driven the hour each way, yada yada, I just let it go. But I did keep exercising. The next fall we had met our family deductible so I wanted to get in all the appts I could think of. So, back to the ortho dr. I was 8 degrees worse. It was a complete shock to me. The dr acted mad- said " when you finally decide to have surgery we can stop the progression. But you need to not wait too long " . Ending up in a wheelchair was mentioned. That was when I decided to find a scolio specialist and ended up in NYC and a whole different outlook. Improved curve, 6 months out of work, plastic brace, etc. I don't know why I went into all that ! :0) It would be interesting to have more info on the polio. And like you, I am glad I didn't have surgery in my teens. However, the fact that I was 45 when I did have mine makes me think my older bones haven't fared too well, for the age reason. I do keep putting off surgery now in the hopes that the Big Fix will be developed sooner than later. Some amazing, simple procedure that holds the spine in place without problems. No doesn't that sound wonderful?? Bea debbie brickley <debbiebrickley@...> wrote: Bea: I remember that was what they told me, my mother and grandmother when my scoli was diagnosed at 12-13, i.e.: possible polio on the left. I am 57; how old are you? I'm seeing more and more how lucky I am that we resisted the whole Harrington rod surgery at that age. Probably about 1964. Scoli surgery then was archaic. But I have the S curve. I would think that a C curve is somewhat rare? I thought most scolis had a compensatory curve. Debbie Beverlee <bea_simmons@...> wrote: Yes- my curve just came over to the right side. One theory about the possible cause, when I was diagnosed at around age 14, was that I might have had polio that just involved the muscles on the left, allowing the muscles on the right to pull my spine to the right. Just a theory. I didn't have the compensatory curve below it that gives it the 'S' shape. I didn't look like I had scoliosis in my clothes, for the most part. As I got shorter and my ribs on the left got down on my hip I developed a slight back hump but it was diminished a lot after surgery. I have no idea how the types of curves compare where problems are involved. I've never given any thought to it- I guess, since everyone talks about their degrees of curvature in upper and lower curves that the " S' curves must outnumber the " C " curves. Anyone out there like me? Bea Dawson Darling <tweaker_bms@...> wrote: lol punny... To be serious again, what exactly is a C curve? doe sthat mean the shape is in a C, not just an S? > > > > Daws, > > Before the surgery I spent 5 years in a brace that > > reached completely up under my chin & went all the way > > down to my hips, so yes I had the butt wiping issue > > prior to the surgery. The only difference was that I > > could take the brace off for 1 hour a day and for all > > the exercise I wanted. Butt access was easier when the > > brace was off, but I still approached from the left > > side because my rib hump was larger due to the curve > > being larger. It's not a big issue because I forgot to > > mention it until I read someone else's post. ~Moonbeam > > > > > > > __________________________________________________________ > > Never miss a thing. Make your home page. > > http://www./r/hs > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 I wasn't sedated yet, just scared. We had traveled so far, had the long term stay set up at the hotel. I'm thinking about how complicated it would be to do it all over again. Had my leave from work, the teen at home situated, good grief- I knew I didn't want to have to re-schedule. That was the hold they had over me. I am furious at myself that I didn't push to find out what she was talking about. She was very testy and not wanting to say any more about it. I did know my rights, but I was going to have the surgery unless she had said something like ' we're using fish scales and elmer's glue to hold the fusion'. I did get the surgery notes, but not the rest of the chart. That's a good idea. They would probably charge me for all of it and right now I don't have any extra dough, but when I do I will see what I can find out. Thinking about it now- if the experimental procedure had been spelled out on the form, I would've read it. I don't think there was anything helpful even on the blasted sheet I signed! Good grief- I get madder the more I think about it ! I spent months making calls and sending registered letters to the hospital and the surgeon because I had intensive care insurance thru AFLAC, but I had to have a bill that showed I was in ICU. It was a few thousand dollars !!!!!!! due to me but the hospital bill was generic and just said 9 days. I was in ICU for 5 days. I was never able to get that straightened out so I was able to collect on the policy. No telling how hard this would be to get- a form I signed. Oh well. I lived to tell about it and feel very lucky and blessed with the life I have. I'll sign off with good thoughts to sleep on :0) Bea debbie brickley <debbiebrickley@...> wrote: And illegal to make you sign something when you were medicated without a chance to think it through. Debbie L Howell <moonbeamblessings@...> wrote: Bea, I'm intrigued about what you signed prior to going into surgery. That's a slimy way to do a procedure...have you medicated & going into OR & saying 'sign it or you're not getting operated on.' Have you requested all the records regarding your hospital stay? Even though it was some 'experimental procedure,' since you had to sign it, they have to have the paperwork since they needed it to begin with. You can find out what the procedure was with that paperwork. You'll have to wade thru all the notes, but knowing medical terminology it should be easy enough. ~Moonbeam __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Bea, Your comment on fish scales & elmer's glue was priceless! I'm appalled at how many facilities are charging now for you to have copies of your medical records. I think a lot of them do this just to discourage you from getting them. Now a 'decent' price for a copying fee, I can understand that. But a flat charge of $20-$50 bucks is ridiculous (which I was quoted from a neurologist I was seeing). I hope you can find the answers to your 'mystery procedure.' ~Moonbeam ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 To everyone that has followed or remembers my case: I saw my surgeon yesterday for the first time since surgery, 9/27. It's a teaching hospital, UCSF, so ofcourse they send in an intern to talk with you and do all the basic exam first, then my surgeon, Dr. Hu, who is head of the dept. I found out: that with current measurements my uncorrected thoracic curve is now at 62%. I got to see my hardware in my lumbar area: titanium screws and hardware joining the 3 levels. And my spine is still very crooked.The intern thought I was doing quite well. They both thought my left sciatica might still resolve on its own, because it might just be nerve irritation that takes awhile to get better. I don't think either one bought into my piriformis problem, on the left side. They just can't believe that that muscle causes my sciatica. But they encouraged me to continue working on it with my physical therapist. I showed them the trigger point " knot " that I have there, and they offered to inject it with lidocaine, so I let them. The intern seemed to think that was the sight of the bone graft harvest, but I've had that knot for a long time, way before my surgery. I still think it's the piri muscle that hasn't calmed down. I asked Dr. Hu and the intern point blank if they had heard anything about the collagen theory and they told me there are a million theories about scoli and none of them have been proved. They think it will come down to a genetic predispostion at some point. I also asked the intern what he thought about my decision to just take care of my lumbar area vs. doing my whole spine and correcting the thoracic area. He sees merit in just doing the part that is the problem at the time. He did say that I am " bone on bone " just above the fusion at L4-5 (so maybe L2 or L1). I told him that I am worried about that L1, T12 area. They didn't have any real suggestions. Interesting though, that they STILL don't want me to exercise beyond the 90 degree parameter for another 2 months, until it's been 6 mo. She says it takes awhile for the fusion to really take place, altho they did see some " fluffy " stuff on the Xray that was indication of fusion happening. And still no anti-inflammatories. So I must continue with narcotics. I don't know why I wrote all this, but it feels good to reaffirm where I'm at. I still have my concerns and I don't know how this will all hold up and where I'll be in 10 years. So for now, I think I'm going to stretch more and enjoy what I've got at this moment. Thanks for listening. Debbie Beverlee <bea_simmons@...> wrote: I'm 57 as well !! I haven't heard any stats on curves. I've said before that I am ashamedly passive about my care at times. I look for the best person and turn myself over to him/her. I think it has to do with stress maintenance. My way of dealing with things. I heard one dr call my curve a teacup handle. I had a lot of rotation, a whole lot. first had problems because of discs " falling " out of place at the bottom of the curve, just as it was about to go into the straight base, if that makes any sense. I only had one measurement given me- a 65 degree curve before surgery. If it is true that some of us have a curve because of polio, it makes sense that the curve would worsen with age because of general atrophy of muscles with age. The thing is, when I was first pushed to see a surgeon by a chiropractor, it was a general ortho surgeon. He specialized in spine stuff, but not scoliosis. He did, however, attempt a few scoliosis surgeries a year. He told me I would be out of work for a year, possibly in a body cast and that he couldn't improve the curve, only stop the progression. I was 43 years old at that time. I went home and started exercising. I went at it with a real determination. So much so that I just knew that not only would my curve not be worse, I just knew it would actually be better. I had a big " gym " in the bedroom, with the different stations with the pulleys and weights. We didn't have room for it- we climbed around it for months and months. I had an appt one year later, went to the same office, signed in, only to be told that the dr had opened a new practice across town, with a few other spine drs. I had not been notified. I was so frustrated that I had taken off work, driven the hour each way, yada yada, I just let it go. But I did keep exercising. The next fall we had met our family deductible so I wanted to get in all the appts I could think of. So, back to the ortho dr. I was 8 degrees worse. It was a complete shock to me. The dr acted mad- said " when you finally decide to have surgery we can stop the progression. But you need to not wait too long " . Ending up in a wheelchair was mentioned. That was when I decided to find a scolio specialist and ended up in NYC and a whole different outlook. Improved curve, 6 months out of work, plastic brace, etc. I don't know why I went into all that ! :0) It would be interesting to have more info on the polio. And like you, I am glad I didn't have surgery in my teens. However, the fact that I was 45 when I did have mine makes me think my older bones haven't fared too well, for the age reason. I do keep putting off surgery now in the hopes that the Big Fix will be developed sooner than later. Some amazing, simple procedure that holds the spine in place without problems. No doesn't that sound wonderful?? Bea debbie brickley <debbiebrickley@...> wrote: Bea: I remember that was what they told me, my mother and grandmother when my scoli was diagnosed at 12-13, i.e.: possible polio on the left. I am 57; how old are you? I'm seeing more and more how lucky I am that we resisted the whole Harrington rod surgery at that age. Probably about 1964. Scoli surgery then was archaic. But I have the S curve. I would think that a C curve is somewhat rare? I thought most scolis had a compensatory curve. Debbie Beverlee <bea_simmons@...> wrote: Yes- my curve just came over to the right side. One theory about the possible cause, when I was diagnosed at around age 14, was that I might have had polio that just involved the muscles on the left, allowing the muscles on the right to pull my spine to the right. Just a theory. I didn't have the compensatory curve below it that gives it the 'S' shape. I didn't look like I had scoliosis in my clothes, for the most part. As I got shorter and my ribs on the left got down on my hip I developed a slight back hump but it was diminished a lot after surgery. I have no idea how the types of curves compare where problems are involved. I've never given any thought to it- I guess, since everyone talks about their degrees of curvature in upper and lower curves that the " S' curves must outnumber the " C " curves. Anyone out there like me? Bea Dawson Darling <tweaker_bms@...> wrote: lol punny... To be serious again, what exactly is a C curve? doe sthat mean the shape is in a C, not just an S? > > > > Daws, > > Before the surgery I spent 5 years in a brace that > > reached completely up under my chin & went all the way > > down to my hips, so yes I had the butt wiping issue > > prior to the surgery. The only difference was that I > > could take the brace off for 1 hour a day and for all > > the exercise I wanted. Butt access was easier when the > > brace was off, but I still approached from the left > > side because my rib hump was larger due to the curve > > being larger. It's not a big issue because I forgot to > > mention it until I read someone else's post. ~Moonbeam > > > > > > > __________________________________________________________ > > Never miss a thing. Make your home page. > > http://www./r/hs > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Dear Beverly, so you had the surgery already? Note to all: if you have scoliosis and exercise this is important. If you have one curve, do side bends in the opposite direction of the curve TWICE AS MUCH as to the other side. So. If your curve looks like a big C, bend to the right twice as much. If you have an S curve, bend against the longest curve. So, if the top of the S curve is worse and goes outward to the left, bend to the right twice as much. I GUARANTEE that the curves will lesson. What happened to me was I found out too late. Had too much pain and at 76 degrees in lumbar, well, surgery was the only answer for me. Lana Beverlee <bea_simmons@...> wrote: I'm 57 as well !! I haven't heard any stats on curves. I've said before that I am ashamedly passive about my care at times. I look for the best person and turn myself over to him/her. I think it has to do with stress maintenance. My way of dealing with things. I heard one dr call my curve a teacup handle. I had a lot of rotation, a whole lot. first had problems because of discs " falling " out of place at the bottom of the curve, just as it was about to go into the straight base, if that makes any sense. I only had one measurement given me- a 65 degree curve before surgery. If it is true that some of us have a curve because of polio, it makes sense that the curve would worsen with age because of general atrophy of muscles with age. The thing is, when I was first pushed to see a surgeon by a chiropractor, it was a general ortho surgeon. He specialized in spine stuff, but not scoliosis. He did, however, attempt a few scoliosis surgeries a year. He told me I would be out of work for a year, possibly in a body cast and that he couldn't improve the curve, only stop the progression. I was 43 years old at that time. I went home and started exercising. I went at it with a real determination. So much so that I just knew that not only would my curve not be worse, I just knew it would actually be better. I had a big " gym " in the bedroom, with the different stations with the pulleys and weights. We didn't have room for it- we climbed around it for months and months. I had an appt one year later, went to the same office, signed in, only to be told that the dr had opened a new practice across town, with a few other spine drs. I had not been notified. I was so frustrated that I had taken off work, driven the hour each way, yada yada, I just let it go. But I did keep exercising. The next fall we had met our family deductible so I wanted to get in all the appts I could think of. So, back to the ortho dr. I was 8 degrees worse. It was a complete shock to me. The dr acted mad- said " when you finally decide to have surgery we can stop the progression. But you need to not wait too long " . Ending up in a wheelchair was mentioned. That was when I decided to find a scolio specialist and ended up in NYC and a whole different outlook. Improved curve, 6 months out of work, plastic brace, etc. I don't know why I went into all that ! :0) It would be interesting to have more info on the polio. And like you, I am glad I didn't have surgery in my teens. However, the fact that I was 45 when I did have mine makes me think my older bones haven't fared too well, for the age reason. I do keep putting off surgery now in the hopes that the Big Fix will be developed sooner than later. Some amazing, simple procedure that holds the spine in place without problems. No doesn't that sound wonderful?? Bea debbie brickley <debbiebrickley@...> wrote: Bea: I remember that was what they told me, my mother and grandmother when my scoli was diagnosed at 12-13, i.e.: possible polio on the left. I am 57; how old are you? I'm seeing more and more how lucky I am that we resisted the whole Harrington rod surgery at that age. Probably about 1964. Scoli surgery then was archaic. But I have the S curve. I would think that a C curve is somewhat rare? I thought most scolis had a compensatory curve. Debbie Beverlee <bea_simmons@...> wrote: Yes- my curve just came over to the right side. One theory about the possible cause, when I was diagnosed at around age 14, was that I might have had polio that just involved the muscles on the left, allowing the muscles on the right to pull my spine to the right. Just a theory. I didn't have the compensatory curve below it that gives it the 'S' shape. I didn't look like I had scoliosis in my clothes, for the most part. As I got shorter and my ribs on the left got down on my hip I developed a slight back hump but it was diminished a lot after surgery. I have no idea how the types of curves compare where problems are involved. I've never given any thought to it- I guess, since everyone talks about their degrees of curvature in upper and lower curves that the " S' curves must outnumber the " C " curves. Anyone out there like me? Bea Dawson Darling <tweaker_bms@...> wrote: lol punny... To be serious again, what exactly is a C curve? doe sthat mean the shape is in a C, not just an S? > > > > Daws, > > Before the surgery I spent 5 years in a brace that > > reached completely up under my chin & went all the way > > down to my hips, so yes I had the butt wiping issue > > prior to the surgery. The only difference was that I > > could take the brace off for 1 hour a day and for all > > the exercise I wanted. Butt access was easier when the > > brace was off, but I still approached from the left > > side because my rib hump was larger due to the curve > > being larger. It's not a big issue because I forgot to > > mention it until I read someone else's post. ~Moonbeam > > > > > > > __________________________________________________________ > > Never miss a thing. Make your home page. > > http://www./r/hs > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 I'm happy that you had a good fusion and that you're happy with the result. Good for you! Lana Beverlee <bea_simmons@...> wrote: I wasn't sedated yet, just scared. We had traveled so far, had the long term stay set up at the hotel. I'm thinking about how complicated it would be to do it all over again. Had my leave from work, the teen at home situated, good grief- I knew I didn't want to have to re-schedule. That was the hold they had over me. I am furious at myself that I didn't push to find out what she was talking about. She was very testy and not wanting to say any more about it. I did know my rights, but I was going to have the surgery unless she had said something like ' we're using fish scales and elmer's glue to hold the fusion'. I did get the surgery notes, but not the rest of the chart. That's a good idea. They would probably charge me for all of it and right now I don't have any extra dough, but when I do I will see what I can find out. Thinking about it now- if the experimental procedure had been spelled out on the form, I would've read it. I don't think there was anything helpful even on the blasted sheet I signed! Good grief- I get madder the more I think about it ! I spent months making calls and sending registered letters to the hospital and the surgeon because I had intensive care insurance thru AFLAC, but I had to have a bill that showed I was in ICU. It was a few thousand dollars !!!!!!! due to me but the hospital bill was generic and just said 9 days. I was in ICU for 5 days. I was never able to get that straightened out so I was able to collect on the policy. No telling how hard this would be to get- a form I signed. Oh well. I lived to tell about it and feel very lucky and blessed with the life I have. I'll sign off with good thoughts to sleep on :0) Bea debbie brickley <debbiebrickley@...> wrote: And illegal to make you sign something when you were medicated without a chance to think it through. Debbie L Howell <moonbeamblessings@...> wrote: Bea, I'm intrigued about what you signed prior to going into surgery. That's a slimy way to do a procedure...have you medicated & going into OR & saying 'sign it or you're not getting operated on.' Have you requested all the records regarding your hospital stay? Even though it was some 'experimental procedure,' since you had to sign it, they have to have the paperwork since they needed it to begin with. You can find out what the procedure was with that paperwork. You'll have to wade thru all the notes, but knowing medical terminology it should be easy enough. ~Moonbeam __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Interesting....I had open heart surgery at 6 months of age. The scar is on my left side, but muscularity seems stronger on that side. And the form of the body seems more normal on the left as well. Maybe the scar shifted from it's origin? I also have a lot of stuff from goldenhars syndrome though. > > Bea, > I have a C curve, right thoracic. Ideopathic-but the > theory was that since I had 2 open heart surgeries > (age 17 mos & 6 yrs) that cracking open the sternum & > the related incisions on the left side of my body > (running from just under the left shoulder blade & > under the arm around the side) & the one straight down > the middle of my chest somehow made the muscles on the > left weaker. Therefore leading to the right upper back > muscles being stronger & pulling the curve in that > direction. It was never more than their theory, > although in my research I have found other girls who > had open heart surgery & scoliosis. I suppose as more > forums develop, more of us will find each other. > > So they think possibly polio could've contributed to > yours? > > I've only known girls who had C curves. All thoracic. > I'd never even spoken to anyone with an S curve until > I joined this group. > > I only know one guy who had scoliosis in school & he > only wore the brace, he never had the surgery. His > curve stopped progressing, but he developed MS. Who > knows? He might've had MS to begin with & was just > diagnosed years later. ~Moonbeam > > > ________________________________________________________________________________\ ____ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Made a serious mistake in the note quoted below! If one has an S curve, bend into the longest of the two. For instance, if one has a curve that is OPPOSITE the shape of the letter C, one would bend to the left, NOT THE RIGHT. So, one would bend into the outside of the arch. Lana > > > > > > Daws, > > > Before the surgery I spent 5 years in a brace that > > > reached completely up under my chin & went all the way > > > down to my hips, so yes I had the butt wiping issue > > > prior to the surgery. The only difference was that I > > > could take the brace off for 1 hour a day and for all > > > the exercise I wanted. Butt access was easier when the > > > brace was off, but I still approached from the left > > > side because my rib hump was larger due to the curve > > > being larger. It's not a big issue because I forgot to > > > mention it until I read someone else's post. ~Moonbeam > > > > > > > > > > > __________________________________________________________ > > > Never miss a thing. Make your home page. > > > http://www./r/hs > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Debbie, Thanks for the update! I especially appreciate all the detail you go into-it's very informative. ~Moonbeam ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Dawson, So interesting that you had open-heart surgery also. That your scar from that is on your left side & that side is stronger is interesting. Do you mind telling me the heart dx? Mine were PDA, VSD & now ASD. Have you had any more heart issues over your life due to the congenital defect or surgery? Sounds like you have quite a history as well... ~Moonbeam ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Dawson, So interesting that you had open-heart surgery also. That your scar from that is on your left side & that side is stronger is interesting. Do you mind telling me the heart dx? Mine were PDA, VSD & now ASD. Have you had any more heart issues over your life due to the congenital defect or surgery? Sounds like you have quite a history as well... ~Moonbeam ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 So the curve is now at 62% (or do you mean degrees?) What was it before surgery? I'm 57 as well !! I haven't heard any stats on curves. I've said before that I am ashamedly passive about my care at times. I look for the best person and turn myself over to him/her. I think it has to do with stress maintenance. My way of dealing with things. I heard one dr call my curve a teacup handle. I had a lot of rotation, a whole lot. first had problems because of discs " falling " out of place at the bottom of the curve, just as it was about to go into the straight base, if that makes any sense. I only had one measurement given me- a 65 degree curve before surgery. > > If it is true that some of us have a curve because of polio, it makes sense that the curve would worsen with age because of general atrophy of muscles with age. The thing is, when I was first pushed to see a surgeon by a chiropractor, it was a general ortho surgeon. He specialized in spine stuff, but not scoliosis. He did, however, attempt a few scoliosis surgeries a year. He told me I would be out of work for a year, possibly in a body cast and that he couldn't improve the curve, only stop the progression. I was 43 years old at that time. I went home and started exercising. I went at it with a real determination. So much so that I just knew that not only would my curve not be worse, I just knew it would actually be better. I had a big " gym " in the bedroom, with the different stations with the pulleys and weights. We didn't have room for it- we climbed around it for months and months. I had an appt one year later, went to the same office, signed in, only to be told that the > dr had opened a new practice across town, with a few other spine drs. I had not been notified. > > I was so frustrated that I had taken off work, driven the hour each way, yada yada, I just let it go. But I did keep exercising. The next fall we had met our family deductible so I wanted to get in all the appts I could think of. So, back to the ortho dr. I was 8 degrees worse. It was a complete shock to me. The dr acted mad- said " when you finally decide to have surgery we can stop the progression. But you need to not wait too long " . Ending up in a wheelchair was mentioned. That was when I decided to find a scolio specialist and ended up in NYC and a whole different outlook. Improved curve, 6 months out of work, plastic brace, etc. > > I don't know why I went into all that ! :0) It would be interesting to have more info on the polio. And like you, I am glad I didn't have surgery in my teens. However, the fact that I was 45 when I did have mine makes me think my older bones haven't fared too well, for the age reason. I do keep putting off surgery now in the hopes that the Big Fix will be developed sooner than later. Some amazing, simple procedure that holds the spine in place without problems. No doesn't that sound wonderful?? > Bea > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 I'm sorry, but good to know someone actually reads this stuff. It's 62 degrees; and I had thought it was more like 52-55 degrees. But I has also read, maybe even in Wolpert's book, which I finally got and read recently, that these measurements can be off between Mds or even between the same Md reading another Xray at another time. But I was surprised it was 62; but I got a good look at the Xray, and I'm pretty crooked. Debbie. Dawson Darling <tweaker_bms@...> wrote: So the curve is now at 62% (or do you mean degrees?) What was it before surgery? I'm 57 as well !! I haven't heard any stats on curves. I've said before that I am ashamedly passive about my care at times. I look for the best person and turn myself over to him/her. I think it has to do with stress maintenance. My way of dealing with things. I heard one dr call my curve a teacup handle. I had a lot of rotation, a whole lot. first had problems because of discs " falling " out of place at the bottom of the curve, just as it was about to go into the straight base, if that makes any sense. I only had one measurement given me- a 65 degree curve before surgery. > > If it is true that some of us have a curve because of polio, it makes sense that the curve would worsen with age because of general atrophy of muscles with age. The thing is, when I was first pushed to see a surgeon by a chiropractor, it was a general ortho surgeon. He specialized in spine stuff, but not scoliosis. He did, however, attempt a few scoliosis surgeries a year. He told me I would be out of work for a year, possibly in a body cast and that he couldn't improve the curve, only stop the progression. I was 43 years old at that time. I went home and started exercising. I went at it with a real determination. So much so that I just knew that not only would my curve not be worse, I just knew it would actually be better. I had a big " gym " in the bedroom, with the different stations with the pulleys and weights. We didn't have room for it- we climbed around it for months and months. I had an appt one year later, went to the same office, signed in, only to be told that the > dr had opened a new practice across town, with a few other spine drs. I had not been notified. > > I was so frustrated that I had taken off work, driven the hour each way, yada yada, I just let it go. But I did keep exercising. The next fall we had met our family deductible so I wanted to get in all the appts I could think of. So, back to the ortho dr. I was 8 degrees worse. It was a complete shock to me. The dr acted mad- said " when you finally decide to have surgery we can stop the progression. But you need to not wait too long " . Ending up in a wheelchair was mentioned. That was when I decided to find a scolio specialist and ended up in NYC and a whole different outlook. Improved curve, 6 months out of work, plastic brace, etc. > > I don't know why I went into all that ! :0) It would be interesting to have more info on the polio. And like you, I am glad I didn't have surgery in my teens. However, the fact that I was 45 when I did have mine makes me think my older bones haven't fared too well, for the age reason. I do keep putting off surgery now in the hopes that the Big Fix will be developed sooner than later. Some amazing, simple procedure that holds the spine in place without problems. No doesn't that sound wonderful?? > Bea > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Thanks, MB, Like I told Dawson, good to know that someone reads this stuff. Writing it all down is like therapy in itself. Debbie L Howell <moonbeamblessings@...> wrote: Debbie, Thanks for the update! I especially appreciate all the detail you go into-it's very informative. ~Moonbeam __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Dear Debbie, The time of day that the xrays are taken and measured also can effect the resulting measurements. I can't remember at this time if Am is best for xrays and measuring of pm. Maybe someone can help us with that. Fyfer debbie brickley <debbiebrickley@...> wrote: I'm sorry, but good to know someone actually reads this stuff. It's 62 degrees; and I had thought it was more like 52-55 degrees. But I has also read, maybe even in Wolpert's book, which I finally got and read recently, that these measurements can be off between Mds or even between the same Md reading another Xray at another time. But I was surprised it was 62; but I got a good look at the Xray, and I'm pretty crooked. Debbie. Recent Activity 5 New Members Visit Your Group Health Memory Loss Are you at risk for Alzheimers? Meditation and Lovingkindness A Group to share and learn. Latest product news Join Mod. Central stay connected. . --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Is it common for rods to break? --- Randie Meyer <taknitlite@...> wrote: > My pain came because where my rods broke I didn't > fuse and my curves have started to worsen. In > addition, my upper spine where the fusion took > doesn't compensate so my body is a mess. Can't wait > to have the surgery. I hate going through it again, > leaving my dogs, recovery and all that. But I'm so > sick of the pain and being in limbo. One week to go. > > > Re: Contemplating > Surgery for my Scoliosis > > Wait, new bone? Where'd that come from? > > > > > > > > Daws, > > > Before the surgery I spent 5 years in a brace > that > > > reached completely up under my chin & went all > the way > > > down to my hips, so yes I had the butt wiping > issue > > > prior to the surgery. The only difference was > that I > > > could take the brace off for 1 hour a day and > for all > > > the exercise I wanted. Butt access was easier > when the > > > brace was off, but I still approached from the > left > > > side because my rib hump was larger due to the > curve > > > being larger. It's not a big issue because I > forgot to > > > mention it until I read someone else's post. > ~Moonbeam > > > > > > > > > > > ____________ _________ _________ _________ > _________ _________ _ > > > Never miss a thing. Make your home page. > > > http://www.. com/r/hs > > > > > > > > > > > > > > > > > ------------ --------- --------- --- > > Looking for last minute shopping deals? Find them > fast with > Search. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > ________________________________________________________________________________\ ____ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 does anyone know the effects of having rods and screws in the body for many many years? --- Dawson Darling <tweaker_bms@...> wrote: > Wait, new bone? Where'd that come from? > > > > > > > > Daws, > > > Before the surgery I spent 5 years in a brace > that > > > reached completely up under my chin & went all > the way > > > down to my hips, so yes I had the butt wiping > issue > > > prior to the surgery. The only difference was > that I > > > could take the brace off for 1 hour a day and > for all > > > the exercise I wanted. Butt access was easier > when the > > > brace was off, but I still approached from the > left > > > side because my rib hump was larger due to the > curve > > > being larger. It's not a big issue because I > forgot to > > > mention it until I read someone else's post. > ~Moonbeam > > > > > > > > > > > > __________________________________________________________ > > > Never miss a thing. Make your home page. > > > http://www./r/hs > > > > > > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find them > fast with > Search. > > > > [Non-text portions of this message have been > removed] > > > > > ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Dear Gail, I think that most of the rods that break are Harrington Rods. These are no longer used. Other rods break infrequently. I have titanium. They are lighter than stainless steel, but are 'brittle,' I've heard. But, they break rarely, also. Lana Gail Merri <p0etiss@...> wrote: Is it common for rods to break? --- Randie Meyer <taknitlite@...> wrote: > My pain came because where my rods broke I didn't > fuse and my curves have started to worsen. In > addition, my upper spine where the fusion took > doesn't compensate so my body is a mess. Can't wait > to have the surgery. I hate going through it again, > leaving my dogs, recovery and all that. But I'm so > sick of the pain and being in limbo. One week to go. > > > Re: Contemplating > Surgery for my Scoliosis > > Wait, new bone? Where'd that come from? > > > > > > > > Daws, > > > Before the surgery I spent 5 years in a brace > that > > > reached completely up under my chin & went all > the way > > > down to my hips, so yes I had the butt wiping > issue > > > prior to the surgery. The only difference was > that I > > > could take the brace off for 1 hour a day and > for all > > > the exercise I wanted. Butt access was easier > when the > > > brace was off, but I still approached from the > left > > > side because my rib hump was larger due to the > curve > > > being larger. It's not a big issue because I > forgot to > > > mention it until I read someone else's post. > ~Moonbeam > > > > > > > > > > > ____________ _________ _________ _________ > _________ _________ _ > > > Never miss a thing. Make your home page. > > > http://www.. com/r/hs > > > > > > > > > > > > > > > > > ------------ --------- --------- --- > > Looking for last minute shopping deals? Find them > fast with > Search. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Never miss a thing. Make your home page. http://www./r/hs --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Pulminary venus return. it was at 6 weeks of age, and I had nothing and no issues since. Even recently the AHA determined that people in my situation no longer even need antibiotics before dentist work, which I always had until this year. My history is basically a mild form of goldenhars syndrome. Somethings absent, somethings extra. > > Dawson, > So interesting that you had open-heart surgery also. > That your scar from that is on your left side & that > side is stronger is interesting. Do you mind telling > me the heart dx? Mine were PDA, VSD & now ASD. Have > you had any more heart issues over your life due to > the congenital defect or surgery? Sounds like you have > quite a history as well... ~Moonbeam > > > ________________________________________________________________________________\ ____ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Dawson, I've had the hardware for 31 yrs now & it seems fine in xrays. I don't know of any stats on their affect on the body or the body's affect on them. ~Moonbeam ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Dawson, Great that your heart is ok and you don't even have to take prophy antibiotics. I've always had to & still do prior to dental work or any invasive procedure. Fortunately it's not as bad as it used to be: I used to have to take antibiotics days in advance, then it advanced to 1 day, then hours, now I can take 1 pill 1 hour prior & I'm done. Ain't science grand? ~Moonbeam ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Thank you Lana. --- Lana Jarvis <fyfer1949@...> wrote: > Dear Gail, I think that most of the rods that break > are Harrington Rods. These are no longer used. > Other rods break infrequently. I have titanium. > They are lighter than stainless steel, but are > 'brittle,' I've heard. But, they break rarely, > also. > > Lana > > Gail Merri <p0etiss@...> wrote: > Is it common for rods to break? > --- Randie Meyer <taknitlite@...> wrote: > > > My pain came because where my rods broke I didn't > > fuse and my curves have started to worsen. In > > addition, my upper spine where the fusion took > > doesn't compensate so my body is a mess. Can't > wait > > to have the surgery. I hate going through it > again, > > leaving my dogs, recovery and all that. But I'm so > > sick of the pain and being in limbo. One week to > go. > > > > > > Re: Contemplating > > Surgery for my Scoliosis > > > > Wait, new bone? Where'd that come from? > > > > > > > > > > > > Daws, > > > > Before the surgery I spent 5 years in a brace > > that > > > > reached completely up under my chin & went all > > the way > > > > down to my hips, so yes I had the butt wiping > > issue > > > > prior to the surgery. The only difference was > > that I > > > > could take the brace off for 1 hour a day and > > for all > > > > the exercise I wanted. Butt access was easier > > when the > > > > brace was off, but I still approached from the > > left > > > > side because my rib hump was larger due to the > > curve > > > > being larger. It's not a big issue because I > > forgot to > > > > mention it until I read someone else's post. > > ~Moonbeam > > > > > > > > > > > > > > > ____________ _________ _________ _________ > > _________ _________ _ > > > > Never miss a thing. Make your home page. > > > > > http://www.. com/r/hs > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --- > > > Looking for last minute shopping deals? Find > them > > fast with > > Search. > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > __________________________________________________________ > > Be a better friend, newshound, and > > know-it-all with Mobile. Try it now. > > > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________________ > Never miss a thing. Make your home page. > http://www./r/hs > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with > Mobile. Try it now. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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