Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Yes, I had the lower portion of my rods removed. The upper portion of my back---the rods are there---but the lower part are not. Carol V. > > Was anyone had their revision rods removed? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 Hi , I was wondering why you were asking about hardware removal? Is your doc recommending it? Or are you interested in that procedure for other reasons? I ask because it’s recently been suggested to me by physical/massage therapists that I have my rods removed completely so that I can start exercising my spinal muscles. Right now they’re pretty much embedded in the hardware. I had my first surgery, for a 56 degree lumbar-thoracic curvature, in the early 70’s; total revision in 2003; and partial (half of a rod: I have two) hardware removal in 2008. I had the half-rod removed because the screws on it were very close to the surface of my skin and I was in a lot of pain. But I was advised to take out only the half-rod and to leave the rest in because I was told my spine/muscles still want to twist and, without rods, the fusion would break down. I saw a second doctor for another opinion and he concurred. So I only had the half-rod out. But now I have scar tissue pain along the curvature (now 25 degrees) and pain above the fusion (T10) that turns into a chronic headache. I sought out massage and physical therapy – and Pilates – to combat the pain, but nothing makes it better and it’s painful to be massaged and to exercise. To get at the scar tissue (which needs to be manually reduced – not surgically – because it comes back), I’m being advised to get the whole rod system out. Naturally my doc (Boachie in NYC) is against it. So, if there’s anyone out there who had all of their hardware removed, could you please respond to this post???Many thanks,AndraBoulder CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 is the one who asked, so I have not seen her posting very frequently. I can address my experiences, hopefully will chime in. I had revision surgery in Mar. 2007, and had my hardware removed in Mar. 2008. I was noting some pain from the hip/buttocks area. Dr. Hu said to have it done 1 yr. after my original surgery would be ideal. There may be others that have had it done, but T., also had it done. She doesn't post anymore. Dr. Hu just removed the lower half of my revision rods & other hardware below my waist. In the meantime, I had a brain tumor (non-cancerous)but I have had a lot of surgeries for my head/brain tumor in the past 2-1/2 yrs. I still need to have one more surgery to put a titanium piece in my skull. Since I had it done, I have been having some pain in my lower back/hip area. I have had 2 incidents of a " pinched nerve " that goes away in time, but I have a numbness left there that goes down my left hip area on down to the back of my left knee. I also have noticed that my legs are uneven, or at least they " seem " uneven. When I stand up " evenly " on my two legs, my shoulders are uneven. I am going to see Dr. Hu (UCSF) on Monday, so I have to address these things with her. I will probably post my findings after. My pain levels got worse after I had my brain tumor removed. Before that, I didn't notice pain, but I think my brain tumor " caused " the " lack of pain " sensation. In the fall 2008, I started taking Norco for pain, and Skelaxin for muscle issues. So, I don't know if this history will help you or not. You noted that you have pain in the upper back & scar tissue along your curve along the rod area. I can't say I have that. But I have noticed the tendency to get " pinched nerves " (for a lack of a better term) in a lot of cases. I will never have another back surgery! I have made up my mind on that, anyway. If I ever have to have a wheelchair to get around, so be it. I have had SO MANY SURGERIES in the last 4 yrs. Other than my " head " or " skull " surgery in a few months, I am just " surgeried " out!!! Hope this helps you. Carol V. > > Hi , > > > > I was wondering why you were asking about hardware removal? Is your doc > recommending it? Or are you interested in that procedure for other reasons? > > > > I ask because it's recently been suggested to me by physical/massage > therapists that I have my rods removed completely so that I can start > exercising my spinal muscles. Right now they're pretty much embedded in the > hardware. > > > > I had my first surgery, for a 56 degree lumbar-thoracic curvature, in the > early 70's; total revision in 2003; and partial (half of a rod: I have two) > hardware removal in 2008. I had the half-rod removed because the screws on > it were very close to the surface of my skin and I was in a lot of pain. But > I was advised to take out only the half-rod and to leave the rest in because > I was told my spine/muscles still want to twist and, without rods, the > fusion would break down. I saw a second doctor for another opinion and he > concurred. So I only had the half-rod out. > > > > But now I have scar tissue pain along the curvature (now 25 degrees) and > pain above the fusion (T10) that turns into a chronic headache. I sought out > massage and physical therapy - and Pilates - to combat the pain, but nothing > makes it better and it's painful to be massaged and to exercise. To get at > the scar tissue (which needs to be manually reduced - not surgically - > because it comes back), I'm being advised to get the whole rod system out. > Naturally my doc (Boachie in NYC) is against it. > > > > So, if there's anyone out there who had all of their hardware removed, could > you please respond to this post??? > > Many thanks, > > Andra > > Boulder CO > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 Thanks for the responses. Sorry it took so long. We were out of town. I had my original surgeries in Houston in 1979 (rods in) and in 1982 they were removed because of on going pain. Dr Francis said at that time that he thought it was an intolerance to the rods. Once there were removed the pain stopped. My biggest concern going into the revision surgery was having the same response. Dr LaGrone felt sure that would not happen because the material is different than it was back then. My revision was in Aug 2008. At my 6month visit I was still in so much pain I could barely take care of myself. Dr La Grone know the pain I was having was from the " anchor " screw in my right pelvic but he was unwilling to remove until one year post-op. So Aug 2009 I had that part removed. The debilitating pain was gone! I felt like finally I could start recovering. Through acupuncture, neuro-massage therapy, stretching and walking I have come a long way. Also went to one of Ellen Kiley's weekends which was very eye opening! I can live with the pain I have now but i would rather not. I have this feeling that if these rods were removed I could function almost normal. As hard as the massage therapist works to get my muscle lengthened they just tighten back up. My muscles in my thoracic/lumbar area around the rods ache and hurt, my SI joints still give me trouble but that is getting better, numbness in my right leg continues to improve. Alot of muscle spasming when I have done to much ~ all up and down my right side. In fact even in my facial muscles, the doctors thought I might have MS or had a stroke but all testing was negative. Just muscles that are very mad about being moved I guess. Anyway, just trying to get some information about removing the rods. Dr LaGrone is not wanting to do it. I am hoping that after he sees all I have tried and I still have pain he might reconsider. Andra, can you tell me more about the spine/muscles still want to twist? Do they get to some point and quit pulling so hard?? Thanks for listening. Blessings, > > > > Hi , > > > > > > > > I was wondering why you were asking about hardware removal? Is your doc > > recommending it? Or are you interested in that procedure for other reasons? > > > > > > > > I ask because it's recently been suggested to me by physical/massage > > therapists that I have my rods removed completely so that I can start > > exercising my spinal muscles. Right now they're pretty much embedded in the > > hardware. > > > > > > > > I had my first surgery, for a 56 degree lumbar-thoracic curvature, in the > > early 70's; total revision in 2003; and partial (half of a rod: I have two) > > hardware removal in 2008. I had the half-rod removed because the screws on > > it were very close to the surface of my skin and I was in a lot of pain. But > > I was advised to take out only the half-rod and to leave the rest in because > > I was told my spine/muscles still want to twist and, without rods, the > > fusion would break down. I saw a second doctor for another opinion and he > > concurred. So I only had the half-rod out. > > > > > > > > But now I have scar tissue pain along the curvature (now 25 degrees) and > > pain above the fusion (T10) that turns into a chronic headache. I sought out > > massage and physical therapy - and Pilates - to combat the pain, but nothing > > makes it better and it's painful to be massaged and to exercise. To get at > > the scar tissue (which needs to be manually reduced - not surgically - > > because it comes back), I'm being advised to get the whole rod system out. > > Naturally my doc (Boachie in NYC) is against it. > > > > > > > > So, if there's anyone out there who had all of their hardware removed, could > > you please respond to this post??? > > > > Many thanks, > > > > Andra > > > > Boulder CO > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 That's interesting! you might be one of those rare individuals that can't tolerate the hardware. I do well most of the time, but I also take Skelaxin for muscle cramps, etc....of course, I have to take Norco for the pain in my lower back/pelvic area. There seems to be no good answers to us " scoliosis " people!! Carol V. > > > > > > Hi , > > > > > > > > > > > > I was wondering why you were asking about hardware removal? Is your doc > > > recommending it? Or are you interested in that procedure for other reasons? > > > > > > > > > > > > I ask because it's recently been suggested to me by physical/massage > > > therapists that I have my rods removed completely so that I can start > > > exercising my spinal muscles. Right now they're pretty much embedded in the > > > hardware. > > > > > > > > > > > > I had my first surgery, for a 56 degree lumbar-thoracic curvature, in the > > > early 70's; total revision in 2003; and partial (half of a rod: I have two) > > > hardware removal in 2008. I had the half-rod removed because the screws on > > > it were very close to the surface of my skin and I was in a lot of pain. But > > > I was advised to take out only the half-rod and to leave the rest in because > > > I was told my spine/muscles still want to twist and, without rods, the > > > fusion would break down. I saw a second doctor for another opinion and he > > > concurred. So I only had the half-rod out. > > > > > > > > > > > > But now I have scar tissue pain along the curvature (now 25 degrees) and > > > pain above the fusion (T10) that turns into a chronic headache. I sought out > > > massage and physical therapy - and Pilates - to combat the pain, but nothing > > > makes it better and it's painful to be massaged and to exercise. To get at > > > the scar tissue (which needs to be manually reduced - not surgically - > > > because it comes back), I'm being advised to get the whole rod system out. > > > Naturally my doc (Boachie in NYC) is against it. > > > > > > > > > > > > So, if there's anyone out there who had all of their hardware removed, could > > > you please respond to this post??? > > > > > > Many thanks, > > > > > > Andra > > > > > > Boulder CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Hi , Welcome back. I'm in a similar situation as you. My cranio-sacral massage therapist says that with my rods in place, my muscles cannot be adequately massaged so that a day after he's worked on me, they go back to the way they were - tight and hard. He's suggesting that I have the rods removed and religiously commit to a program of strengthening and stretching to combat spinal curving and twisting. I talked with friends with scoliosis, and three orthopedic surgeons, and they made several good points in favor of keeping my rods in place: 1. Even if the rods are removed, my bones are still fused. Therefore, my spinal muscles still won't be able to bend or move much or any more than they can now. So exercise can't 'get to' them. 2. All the factors that created my curvatures are still in play. My body still wants to curve and twist. The rods are supporting the fusion, which is my defense against curving and twisting. Without the rods, my fusion will be more vulnerable to breaking - because my muscles are still pulling at it. If I can't get to the muscles with exercise, there's a good chance the fusion will break down. At least that's the theory and the worry. No one really knows. 3. Of course any time anyone goes under anesthesia there's a chance something could go wrong. And removing the rods might not be a simple matter. In my case, I've developed a lot of scar tissue, which a surgeon may or may not be able to cut out, but even if he/she could, it's one of many complications he/she might encounter. With complications, there are more chances for injury. 4. Finally, If I were to have my rods out for the strict purpose of more efficacious (hypothetically) massage, I'd be the first (most probably!) person to do it and I don't relish the idea of being a guinea pig again. That's not to say I want someone else to do it. Maybe if someone else had to have her rods removed due to pain or infection or allergy, then it would make more sense to go through with rod removal because it would be less elective surgery and more necessary for quality of life. Right now I'm in chronic intermittent pain for which I take a 1/4 tab of Percocet once or twice a day. I can't do much exercising because it gets my scar tissue pain going and that can take me out of my life for days at a time. So I use a treadmill and am considering returning to warm-water pool exercise. I have an appointment with an Iyengar (rehab) yoga instructor in two weeks, but I tried some of Elise Browning's program and it killed me. I envy you that you got to work with Ellen. I met her (by email) in 2004 and offered to help her write a book about her program - but she didn't feel ready. I think she's the only yoga instructor who specializes in fused spine patients. I'd love to work with her some day! Best of luck to you, ! Please let me/us know what you decide to do. Andy Stanton Boulder CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2011 Report Share Posted April 30, 2011 & Andy - I want to add a little of my past experience to this conversation. Regarding the muscle topic. Twenty-9 years ago I had my broken Harrington removed. Now keep in mind that I was NOT fused when they put the harrington in. Since my back muscles had naturally developed crooked, they snapped my harrington in half within 18 months. I would just be very careful to remove supporting hardware. Your muscle are stronger than you might think. If they can snap a steel rod in half...they could possibly damage unprotected fusions. Just my two cents.......................Kathy From: andrastanton@... <andrastanton@...>Subject: [ ] Re: rods removed Date: Friday, April 29, 2011, 5:09 PM Hi ,Welcome back.I'm in a similar situation as you. My cranio-sacral massage therapist says that with my rods in place, my muscles cannot be adequately massaged so that a day after he's worked on me, they go back to the way they were - tight and hard. He's suggesting that I have the rods removed and religiously commit to a program of strengthening and stretching to combat spinal curving and twisting. I talked with friends with scoliosis, and three orthopedic surgeons, and they made several good points in favor of keeping my rods in place:1. Even if the rods are removed, my bones are still fused. Therefore, my spinal muscles still won't be able to bend or move much or any more than they can now. So exercise can't 'get to' them.2. All the factors that created my curvatures are still in play. My body still wants to curve and twist. The rods are supporting the fusion, which is my defense against curving and twisting. Without the rods, my fusion will be more vulnerable to breaking - because my muscles are still pulling at it. If I can't get to the muscles with exercise, there's a good chance the fusion will break down. At least that's the theory and the worry. No one really knows.3. Of course any time anyone goes under anesthesia there's a chance something could go wrong. And removing the rods might not be a simple matter. In my case, I've developed a lot of scar tissue, which a surgeon may or may not be able to cut out, but even if he/she could, it's one of many complications he/she might encounter. With complications, there are more chances for injury.4. Finally, If I were to have my rods out for the strict purpose of more efficacious (hypothetically) massage, I'd be the first (most probably!) person to do it and I don't relish the idea of being a guinea pig again. That's not to say I want someone else to do it. Maybe if someone else had to have her rods removed due to pain or infection or allergy, then it would make more sense to go through with rod removal because it would be less elective surgery and more necessary for quality of life.Right now I'm in chronic intermittent pain for which I take a 1/4 tab of Percocet once or twice a day. I can't do much exercising because it gets my scar tissue pain going and that can take me out of my life for days at a time. So I use a treadmill and am considering returning to warm-water pool exercise. I have an appointment with an Iyengar (rehab) yoga instructor in two weeks, but I tried some of Elise Browning's program and it killed me. I envy you that you got to work with Ellen. I met her (by email) in 2004 and offered to help her write a book about her program - but she didn't feel ready. I think she's the only yoga instructor who specializes in fused spine patients. I'd love to work with her some day!Best of luck to you, ! Please let me/us know what you decide to do.Andy StantonBoulder CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2011 Report Share Posted April 30, 2011 Hi Andy & , I dont know if it will help at all...and you probably already have followed this story, but Martha in Chicago had good luck using and interventional radiologist, along with a pain doctor, breaking up scar tissue that was entraping her subcluneal nerve and making walkling and moving very painful. Its a few years ago, but here is the post detailing what she told me they were doing to her: #19478. You can google Dr...I think he is out in CA, but clearly is leading the pack with this stuff. Obviously I am not a doctor, but my gut tells me that scar tissue very well might be to blame for continuing pain following revision after what Martha explained to me. In her case, she was feeling very good in all areas, SI included, following revision....and then had a big uptick around 5-6 months post op....and if I remember correctly, Dr told her that was classic scar tissue forming. Anyway....before I had the grueling surgery of rod removal...I would at least see if there is something to this. I am sure Martha will correspond with you....let me know and Ill get in touch with her...I dont think she is reading here regularly anymore. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2011 Report Share Posted May 1, 2011 I had both Harrington rods removed due to their breaking in 2005. I'm not the best person to answer this post since I have ended up with a fixed Kyphosis. My spine fell forward after the rod removels and while my curvature is glaringly apparent there isn't much to be done to correct it other than additional surgery! If anyone has had thoracic fusion please let me know! Thanks, June - NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2011 Report Share Posted May 2, 2011 Thanks, June. Your post was extremely helpful, though I’m so sorry to hear you haven’t done well since your rods were removed. Will you have more surgery? My heart goes out to you. Best Regards,Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 , I too have been considering rod removal. I had original surgery in 05 and my pain level went from a controllable 2-3 to a 7-8 and highly medicated. I have known from the beginning that it was this dang metal in my back. I let another back surgeon talk me into a revision 9 months ago, and now i am fused from T-11 to Sacrum with rods extending down entire area. I want this crap out of my body. I know my body and it does not like this at all. I was very interested in your story and to see if you decided to have rest of this hardware removed? Thanks, SS From: <brightsquared@...>Subject: [ ] Re: rods removed Date: Thursday, April 28, 2011, 12:21 AM Thanks for the responses. Sorry it took so long. We were out of town.I had my original surgeries in Houston in 1979 (rods in) and in 1982 they were removed because of on going pain. Dr Francis said at that time that he thought it was an intolerance to the rods. Once there were removed the pain stopped. My biggest concern going into the revision surgery was having the same response. Dr LaGrone felt sure that would not happen because the material is different than it was back then. My revision was in Aug 2008. At my 6month visit I was still in so much pain I could barely take care of myself. Dr La Grone know the pain I was having was from the "anchor" screw in my right pelvic but he was unwilling to remove until one year post-op. So Aug 2009 I had that part removed. The debilitating pain was gone! I felt like finally I could start recovering. Through acupuncture, neuro-massage therapy, stretching and walking I have come a long way. Also went to one of Ellen Kiley's weekends which was very eye opening! I can live with the pain I have now but i would rather not. I have this feeling that if these rods were removed I could function almost normal.As hard as the massage therapist works to get my muscle lengthened they just tighten back up. My muscles in my thoracic/lumbar area around the rods ache and hurt, my SI joints still give me trouble but that is getting better, numbness in my right leg continues to improve. Alot of muscle spasming when I have done to much ~ all up and down my right side. In fact even in my facial muscles, the doctors thought I might have MS or had a stroke but all testing was negative. Just muscles that are very mad about being moved I guess.Anyway, just trying to get some information about removing the rods. Dr LaGrone is not wanting to do it. I am hoping that after he sees all I have tried and I still have pain he might reconsider.Andra, can you tell me more about the spine/muscles still want to twist? Do they get to some point and quit pulling so hard??Thanks for listening.Blessings, > >> > Hi ,> > > > > > > > I was wondering why you were asking about hardware removal? Is your doc> > recommending it? Or are you interested in that procedure for other reasons?> > > > > > > > I ask because it's recently been suggested to me by physical/massage> > therapists that I have my rods removed completely so that I can start> > exercising my spinal muscles. Right now they're pretty much embedded in the> > hardware.> > > > > > > > I had my first surgery, for a 56 degree lumbar-thoracic curvature, in the> > early 70's; total revision in 2003; and partial (half of a rod: I have two)> > hardware removal in 2008. I had the half-rod removed because the screws on> > it were very close to the surface of my skin and I was in a lot of pain. But> > I was advised to take out only the half-rod and to leave the rest in because> > I was told my spine/muscles still want to twist and, without rods, the> > fusion would break down. I saw a second doctor for another opinion and he> > concurred. So I only had the half-rod out.> > > > > > > > But now I have scar tissue pain along the curvature (now 25 degrees) and> > pain above the fusion (T10) that turns into a chronic headache. I sought out> > massage and physical therapy - and Pilates - to combat the pain, but nothing> > makes it better and it's painful to be massaged and to exercise. To get at> > the scar tissue (which needs to be manually reduced - not surgically -> > because it comes back), I'm being advised to get the whole rod system out.> > Naturally my doc (Boachie in NYC) is against it.> > > > > > > > So, if there's anyone out there who had all of their hardware removed, could> > you please respond to this post???> > > > Many thanks,> > > > Andra> > > > Boulder CO> >> Quote Link to comment Share on other sites More sharing options...
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