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Thread: Hello and broken rods :( :(

  1. #1
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    Hello and broken rods :( :(

    Hello friends,

    Sorry I have been MIA for quite a while. I was doing so well that I wasn't even thinking about my back. However, I recently found out I have three breaks in my rods!!

    Quick background: I was fused T4-S1 in 2012 by Dr. Lawrence Lenke in St. Louis. I had been fine - no complications - until early December. I heard a small pop while slightly bending. Pain didn't start right away. But about 2 weeks later, after I had been lifting some heavy things, I started to be in pain. It has increased significantly each day. Last week I saw my local doc, who took x-rays and found the three breaks in my rods. He said probably they just wore out during the past almost 8 years since my surgery. He prescribed pain meds and a muscle relaxant.

    I had a CT to attempt to determine whether I am fully fused, but I don't have the results yet. He suspects I didn't fuse at the levels where the rods broke. (Around L3-L4, just above where I had cages with BMP inserted during my first surgery.)

    So, I am starting the work to find out if I need revision surgery and, if so, where. My local doctor did say there is a possibility I won't need revision surgery if I can get the pain under control. I had not heard of people living with broken rods, but I guess that's a thing? Anyway, the fact that I do have pain, and it is getting worse, not better, points toward revision surgery. The doc did say I should wait six weeks, however, before making any decisions. He wants me to do physical therapy during that time. Not sure that is going to work, as I can hardly walk without pain.

    Anyway, I am trying to make a plan in case I do need revision surgery. Dr. Lenke is now at Columbia Presbyterian in NY. Dr. Munish Gupta took his place at Washington in St. Louis. Of these two, which do you recommend? It will be harder for me to get to NY, since I live in Indianapolis. (A 4-hour drive to St. Louis, but about 12 hours to NY.) But, I will go to Lenke if he is clearly the better choice. On the other hand, my initial surgery by Lenke has now failed, so hmmm. Does anyone know the scoop on Dr. Gupta? Is he supposed to be a good revision surgeon?

    There is also my local doctor, John Dietz at OrthoIndy. I fear he does not do enough adult revision surgeries, even though he is a fantastic guy. Would love your thoughts on these surgeons, as well as the concept of living with broken rods!

    Hope everyone is doing well and pain free.

    Thanks,
    Evelyn (aka Confusedmom)
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  2. #2
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    Quote Originally Posted by Confusedmom View Post
    Hello friends,

    Sorry I have been MIA for quite a while. I was doing so well that I wasn't even thinking about my back. However, I recently found out I have three breaks in my rods!!

    Quick background: I was fused T4-S1 in 2012 by Dr. Lawrence Lenke in St. Louis. I had been fine - no complications - until early December. I heard a small pop while slightly bending. Pain didn't start right away. But about 2 weeks later, after I had been lifting some heavy things, I started to be in pain. It has increased significantly each day. Last week I saw my local doc, who took x-rays and found the three breaks in my rods. He said probably they just wore out during the past almost 8 years since my surgery. He prescribed pain meds and a muscle relaxant.

    I had a CT to attempt to determine whether I am fully fused, but I don't have the results yet. He suspects I didn't fuse at the levels where the rods broke. (Around L3-L4, just above where I had cages with BMP inserted during my first surgery.)

    So, I am starting the work to find out if I need revision surgery and, if so, where. My local doctor did say there is a possibility I won't need revision surgery if I can get the pain under control. I had not heard of people living with broken rods, but I guess that's a thing? Anyway, the fact that I do have pain, and it is getting worse, not better, points toward revision surgery. The doc did say I should wait six weeks, however, before making any decisions. He wants me to do physical therapy during that time. Not sure that is going to work, as I can hardly walk without pain.

    Anyway, I am trying to make a plan in case I do need revision surgery. Dr. Lenke is now at Columbia Presbyterian in NY. Dr. Munish Gupta took his place at Washington in St. Louis. Of these two, which do you recommend? It will be harder for me to get to NY, since I live in Indianapolis. (A 4-hour drive to St. Louis, but about 12 hours to NY.) But, I will go to Lenke if he is clearly the better choice. On the other hand, my initial surgery by Lenke has now failed, so hmmm. Does anyone know the scoop on Dr. Gupta? Is he supposed to be a good revision surgeon?

    There is also my local doctor, John Dietz at OrthoIndy. I fear he does not do enough adult revision surgeries, even though he is a fantastic guy. Would love your thoughts on these surgeons, as well as the concept of living with broken rods!

    Hope everyone is doing well and pain free.

    Thanks,
    Evelyn (aka Confusedmom)
    Hi Evelyn...

    Sorry to hear about the breaks.

    I actually do know of people who live with broken rods, although the majority of people I know with broken rods, eventually had them replaced. I agree with waiting to see what happens. If you continue to have pain in the area of one or more of the breaks, that's a good indication that you are not fused at that/those level/s.

    The good news is that I honestly don't think you need to travel to have this fixed. While this would certainly be considered a revision surgery, it's probably a pretty simple surgery in comparison to most. If it's a non-fusion problem, the surgery will consist of adding fusion agent(s) (e.g., your own bone, BMP, etc.) to the non-fused level(s), and replacing the rod(s). If you're really insecure, Dr. Gupta has a great reputation, so I think you will probably be comfortable with him.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
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    Hi Linda,

    Thanks for your response. I always appreciate your input. You are a champ for continuing to be on top of the forum all this time!! Hope you are doing well.

    Iím glad to know you hear good things about Dr. Gupta. Did I understand you to mean you think it would also be okay to go with my local 😷 ? I am seeing him this week to get the results of my CT, so I may know more then about whether I need surgery right away or not.

    Thanks again,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  4. #4
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    Quote Originally Posted by Confusedmom View Post
    Hi Linda,

    Thanks for your response. I always appreciate your input. You are a champ for continuing to be on top of the forum all this time!! Hope you are doing well.

    Iím glad to know you hear good things about Dr. Gupta. Did I understand you to mean you think it would also be okay to go with my local 😷 ? I am seeing him this week to get the results of my CT, so I may know more then about whether I need surgery right away or not.

    Thanks again,
    Evelyn
    Hi Evelyn...

    I do think it's probably OK, assuming that your local doc has some decent experience. I would have a serious conversation with him about how confident he feels about fixing your issues. I personally would prefer not to have a primary scoliosis surgery with a rural surgeon who hasn't performed a lot of these surgeries. But, because there aren't really a lot of technical maneuvers involved in replacing a rod, the complexity is somewhat reduced.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
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    I for one do NOT, again, DO NOT recommendDr Gupta in St Louis. Go the little extra and go to Dr Lenke. I broke my rods from Dr Lenke surgery and was doing fine. Started to have pain,saw Dr Gupta, and he replaced the whole implantation I have and Iíve never been the same. I have horrible pain. The X-ray from my most recent surgery looks like a 2nd grader did it. I went back to see Dr Gupta and only thing I was told By Dr Gupta was he said ďnothing I didĒ. I am very frustrated. So, go the extra, see Dr Lenke. I sure wish I would have!
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  6. #6
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    Quote Originally Posted by RitaR View Post
    I for one do NOT, again, DO NOT recommendDr Gupta in St Louis. Go the little extra and go to Dr Lenke. I broke my rods from Dr Lenke surgery and was doing fine. Started to have pain,saw Dr Gupta, and he replaced the whole implantation I have and Iíve never been the same. I have horrible pain. The X-ray from my most recent surgery looks like a 2nd grader did it. I went back to see Dr Gupta and only thing I was told By Dr Gupta was he said ďnothing I didĒ. I am very frustrated. So, go the extra, see Dr Lenke. I sure wish I would have!
    Hi Rita...

    I thoroughly understand your frustration. It's awful to be in chronic pain. And, I get that you think that Dr. Gupta did something wrong. I'd like you to consider, however, that your pain may not have anything to do with Dr. Gupta replacing your implants. While there are surgeons (e.g., Lenke, Boachie) who are considered the gold standard, you can always find some patients who think that their bad outcomes are the surgeons' fault. Spine surgery is not even close to perfect, and in many cases, there is no apparent physical reason the patient ends up in pain. I note that you said that Dr. Lenke "said he could see why I was in so much pain" and that someone at Mayo "said they could see I have a problem". If they really meant that they see what's specifically causing your pain, I'm fairly certain they'd tell you what it is.

    Unfortunately, I don't have any recommendations beyond what you've already been told by the surgeons you've contacted, though I think that pain management is probably your best hope.

    Good luck.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  7. #7
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    Disagree

    [QUOTE=LindaRacine;172242]Hi Rita...

    I thoroughly understand your frustration. It's awful to be in chronic pain. And, I get that you think that Dr. Gupta did something wrong. I'd like you to consider, however, that your pain may not have anything to do with Dr. Gupta replacing your implants. While there are surgeons (e.g., Lenke, Boachie) who are considered the gold standard, you can always find some patients who think that their bad outcomes are the surgeons' fault. Spine surgery is not even close to perfect, and in many cases, there is no apparent physical reason the patient ends up in pain. I note that you said that Dr. Lenke "said he could see why I was in so much pain" and that someone at Mayo "said they could see I have a problem". If they really meant that they see what's specifically causing your pain, I'm fairly certain they'd tell you what it Quote- Donít agree w/ you regarding that doctors always follow through with what comes out of their mouths. In ALL professions & medical institutions there are instances where supposedly professionals are known to not to honor their word. I speak from experience having lived in ortho world. I believe that Rita KNOWS what transpired as she has repeatedly explained how communication played out. I think questioning her story is not helpful. Nancy

  8. #8
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    Quote Originally Posted by Scared View Post
    Donít agree w/ you regarding that doctors always follow through with what comes out of their mouths. In ALL professions & medical institutions there are instances where supposedly professionals are known to not to honor their word. I speak from experience having lived in ortho world. I believe that Rita KNOWS what transpired as she has repeatedly explained how communication played out. I think questioning her story is not helpful. Nancy
    Yeah, I'm with you. Someone can be a great surgeon, and yet as soon as they get a whiff of something gone wrong, they ghost you. I have experienced this, too, I won't go into details. Their office staff goes into medical malpractice defense mode and acts as a buffer between you and the physician.

  9. #9
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    Quote Originally Posted by Tina_R View Post
    Yeah, I'm with you. Someone can be a great surgeon, and yet as soon as they get a whiff of something gone wrong, they ghost you. I have experienced this, too, I won't go into details. Their office staff goes into medical malpractice defense mode and acts as a buffer between you and the physician.
    Maybe some are, but generalities just don't work. It's like saying that all scoliosis patients are just whiners.

    I think we always need to be careful about assuming that we're not getting answers from our surgeon's office because they're afraid they're going to get sued. If a surgeon has done all the diagnostic tests and can't come up with a diagnosis, it might be because there isn't one. That doesn't mean you don't have pain. It does, however, probably mean that they do not have a surgical option for you. If they dropped you without referring you to other practices (e.g., pain management), that really sucks. It was not uncommon, when I worked at UCSF, for patients to continue to try to make additional appointments after being told that surgery was not an option for them. Believe me when I tell that it's just as frustrating for the providers. They want happy patients. Sometimes, there just isn't an answer.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  10. #10
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    Hello,

    Well, I got the results of the CT today. The doctor says he can see bone at the levels where the rods are broken. It's hard to tell whether it completely fused and then broke afterwards or never fused. But, my bending x-rays now show movement at the levels of the breaks. So, he says I definitely have at least one area of nonfusion (pseudarthrosis). I am looking at surgery in a month or two, still not sure where.

    My question for you all is: for those of you who have had rods break, what was your pain like and how did you deal with it while waiting for surgery? I am having trouble sleeping because when I lie on my back, things seem to shift around and I start having nerve pain. Like, on a scale of 1-10, it's an 11 kind of pain. It goes down into my glutes on both sides and feels like I am having knives stabbed into me. During the day the pain is manageable, when I'm just sitting or standing. My doc ordered a brace to help with pain, and I have ibuprofen, Tramadol and cyclobenzeprine (muscle relaxant). Any other suggestions? I slept in a chair last night, and that seemed to help.

    Thanks for your thoughts,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  11. #11
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    Quote Originally Posted by Confusedmom View Post
    Hello,

    Well, I got the results of the CT today. The doctor says he can see bone at the levels where the rods are broken. It's hard to tell whether it completely fused and then broke afterwards or never fused. But, my bending x-rays now show movement at the levels of the breaks. So, he says I definitely have at least one area of nonfusion (pseudarthrosis). I am looking at surgery in a month or two, still not sure where.
    ConfusedMom, I hope you don't mind my using your thread to learn, as I am healing from a fusion surgery of less than a year ago. Is this the first MRI the doctors have done of your bones?
    To Linda, Ed, or anyone knowledgeable: Are CT scans the only imaging that shows whether fusion was successful or not? Are there other means of diagnosing a good fusion? I would have thought ConfusedMom's doctors would have known years before whether her fusion was complete or not. My own doctor only does an x-ray with every return appointment though he did an MRI when I complained about something that seemed abnormal.
    Do they just not bother with expensive diagnostic tools (in the absence of pain or other problems) because there's nothing that can be done about it if bones don't fuse well?
    Selfishly, I wonder how well I'm fusing and if there's a way to tell.
    Last edited by Tina_R; 01-03-2020 at 08:34 PM.

  12. #12
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    Quote Originally Posted by Tina_R View Post
    ConfusedMom, I hope you don't mind my using your thread to learn, as I am healing from a fusion surgery of less than a year ago. Is this the first MRI the doctors have done of your bones?
    To Linda, Ed, or anyone knowledgeable: Are CT scans the only imaging that shows whether fusion was successful or not? Are there other means of diagnosing a good fusion? I would have thought ConfusedMom's doctors would have known years before whether her fusion was complete or not. My own doctor only does an x-ray with every return appointment though he did an MRI when I complained about something that seemed abnormal.
    Do they just not bother with expensive diagnostic tools (in the absence of pain or other problems) because there's nothing that can be done about it if bones don't fuse well?
    Selfishly, I wonder how well I'm fusing and if there's a way to tell.
    CT is definitely gold standard for determining fusion, though not even that is always accurate. They don't routinely do CTs because of their cost and the amount of radiation exposure to a population who typically has already received an immense amount of radiation.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #13
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    Quote Originally Posted by LindaRacine View Post
    CT is definitely gold standard for determining fusion, though not even that is always accurate. They don't routinely do CTs because of their cost and the amount of radiation exposure to a population who typically has already received an immense amount of radiation.

    --Linda
    It's funny though, because I have had several CT scans in my life for other things. What's one more, in my opinion. But if there's nothing they can do to correct a failure to fuse then I guess there's no point.

  14. #14
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    Quote Originally Posted by Tina_R View Post
    ConfusedMom, I hope you don't mind my using your thread to learn, as I am healing from a fusion surgery of less than a year ago. Is this the first MRI the doctors have done of your bones?
    To Linda, Ed, or anyone knowledgeable: Are CT scans the only imaging that shows whether fusion was successful or not? Are there other means of diagnosing a good fusion? I would have thought ConfusedMom's doctors would have known years before whether her fusion was complete or not.
    Hi Tiny, This was not my first CT. I had one probably one year post-op. That one indicated signs of fusion. The one I had recently also looks fused. Everyone (including me) thought I was fused until the rods broke and I started having pain. I suppose itís possible I was fused and somehow broke it at some point?? I have fallen a few times over the past 8 years.

    Anyway, I think the best thing you can do is be kind to your back and stay in good health otherwise (good nutrition, exercise, etc.). Most likely you will fuse (or already have fused) and be just fine!
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  15. #15
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    Quote Originally Posted by Confusedmom View Post
    Hi Tiny, This was not my first CT. I had one probably one year post-op. That one indicated signs of fusion. The one I had recently also looks fused. Everyone (including me) thought I was fused until the rods broke and I started having pain. I suppose itís possible I was fused and somehow broke it at some point?? I have fallen a few times over the past 8 years.

    Anyway, I think the best thing you can do is be kind to your back and stay in good health otherwise (good nutrition, exercise, etc.). Most likely you will fuse (or already have fused) and be just fine!
    I wonder if its possible to not be uniformly fused, to have a few weak points.
    Thanks for answering. And that's good advice. I naively thought I'd be back to normal after my surgery, but I can see that things are different now and I can't be reckless.

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