Results 1 to 15 of 37

Thread: Hello and broken rods :( :(

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    974

    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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,125
    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
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    974
    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.

    I’m 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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,125
    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.

    I’m 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
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    432
    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 I’ve 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 “nothing I did”. 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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,125
    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 I’ve 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 “nothing I did”. 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

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •