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  1. #1
    Join Date
    Jul 2010
    Location
    Dubuque, Iowa
    Posts
    61

    almost 2 years post op...both rods are broken

    Hello Scoli friends,

    It has been quite a while since I have posted, but I have been lurking around for some time. Ever since my first surgery I have always had problems with pain.
    Becoming worse in the past 6 months. The end of November I squatted down to put something in the bottom of my refrigerator and felt and heard a POP, the pain was extreme. I could barely walk, sit or lay down. I used ice and took some hydrocodone and a muscle relaxer that I still had lying around and after awhile the pain subsided enough that I could move. The next day I went to see Dr. Chapman (he is a surgeon here in my home town who follows me) and xrays showed no break and he told me that I probably tore a muscle (the pain was in my left sacral joint area mostly). said it would heal in 8-10 weeks. I took a week off of work to try and recover. I did get a little better for a short while and then I started having more pain and pressure in other areas of my back, I was missing work often and spending a lot of time in bed. On Dec 18th I was driving home from work and felt what I can only describe as an electric jolt with another loud POP. Again the pain was extreme, I had to pull over and collect my self before I could continue driving. I called the Dr and asked for some stronger pain meds, he prescribed some and also a medrol dose pack (thought it was inflammation) and a work release. I continued to get worse and on Dec 23rd went back in, he took another set of xrays and told me that I had an area of non-union and BOTH of my rods were broken. I was devastated. He said one rod must have broke in Nov and it just didn't show up on xray. ( I saw the xray also, it wasn't there). I am in constant pain and haven't been able to lay down flat since xmas day. I am bent forward and have resorted back to using a cane to help me walk. My surgeon Dr. Lenke cannot even see me for 3 months. I will not make it that long. I am scheduled to have surgery here in my hometown on Jan 21st. Please keep me in your thoughts. I am living a nightmare and I can't wake up.
    Spring
    42 yrs old
    Milwaukee braced 1983 to 1989
    was told my curves would never progress
    at 19yrs old 1991, T30-L38
    2010, T38-L56--progression in one year 2011, T40-L67
    new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
    Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
    Dr. Lenke-St. Louis Mo.
    Surgery to clean out infection 2-10-12
    Revision for broken rods 1-23-14

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    First of all, I'm shocked to hear of your plight and hope your new surgery goes well. Secondly, I'm surprised that Lenke, who was your original surgeon, can't see you for three months. I would have thought you were still his patient and this is an emergency.

    Please let us know how you get on with your new surgery. You deserve 100% success.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  3. #3
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162

    my story is nearly identical to yours

    Dear Spring,

    I am so very sorry to hear of your broken rods. Your story is really almost identical to mine. I suffered a loud, painful pop at 15 months post-op but had clear x-rays and bone scan. One month later I had another very loud, painful pop and then both rods were broken. Here is a link to my story:

    http://www.scoliosis.org/forum/showt...rld&highlight=

    I am now close to two years following my extensive revision. Overall I found the revision surgery to be less painful and less difficult than the original surgery. My revision was 8 hours long, but I went straight to a regular room and avoided the ICU. I returned to work (physically demanding job, but on completely restricted duty--sitting only) at 12 weeks post-op. I am doing very well now as I approach the two year mark, although I am still somewhat haunted by the prospect of more broken rods.

    I am curious what levels are broken? What will your upcoming surgery entail? Do they plan to remove/revise the rods completely? What will they do to ensure you fuse completely this time? I am pretty shocked also that Lenke can not see you for three months nor help you in this situation. I hope you feel complete confidence in the surgeon who will do the revision. That is still a very big surgery.

    Best of luck, and please let us know how you are doing. I can 100% relate to how you feel and remember it well. You will get through this, I promise. Feel free to ask me anything about my revision experiences.
    Last edited by leahdragonfly; 01-16-2014 at 07:06 PM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Spring...

    Surgery to replace your rods and refuse the pseudarthrosis is actually a relatively minor surgery. Would it be possible to have someone else do the surgery? It would be great to see Dr. Lenke again, but I can tell you that it really doesn't take someone of his class to fix your problem.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  5. #5
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Spring,
    I can't tell you how bad I feel for you. It seems unbelievable to me that Dr. Lenke can't see you with this painful situation. I had my 3 year check up on the 10th and certainly would have given you my appointment which could have been postponed. I hope you feel a little better about everything after reading Linda's reply. We sure like to think that we're out of the woods after a year post-op and to have broken rods now has to be devastating to you. I'm sure you will do fine after your surgery and feel much relief. I will keep you in my thoughts and prayers.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  6. #6
    Join Date
    Jul 2010
    Location
    Dubuque, Iowa
    Posts
    61
    thank you all for your kind words....Gayle, that is crazy that our stories are so similar, I am so glad you are two years post op from this and still doing well, that gives me hope. I'm not sure of the specifics but I think the rods are broken at L2/3, I have cages in L4 and L5 and will be having a couple more put in in the area of the pseudarthrosis. And yes I am having the surgery done by someone else because Lenke can't fit me in, this surgeon is a spine specialist and I feel confident he will be able to fix me. But how can I feel confident that this won't happen again? It is such a long recovery to have to start over and over again. I will post again after I'm fixed
    Spring
    42 yrs old
    Milwaukee braced 1983 to 1989
    was told my curves would never progress
    at 19yrs old 1991, T30-L38
    2010, T38-L56--progression in one year 2011, T40-L67
    new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
    Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
    Dr. Lenke-St. Louis Mo.
    Surgery to clean out infection 2-10-12
    Revision for broken rods 1-23-14

  7. #7
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Glad to hear your doing well! Prayers for a speedy recovery!
    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  8. #8
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Thanks so much for posting. I've been thinking about you and so happy to hear that everything went well. I hope you feel a little better each day as you recover from this surgery. I bet you are happy to be standing straight again and with less pain!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  9. #9
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Great news. I hope you have a pain free recovery.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  10. #10
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Great news! Hope all goes well for you from here on.

    PS, I had indigestion for the first time in hospital after surgery. I was eventually diagnosed with gall stones. Had them out and the really bad pain has gone, but still get indigestion occasionally. I lived nearly 58 years before I had indigestion the first time, I feel it had something to do with my surgery, not a coincidence.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  11. #11
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    I am happy for you!
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  12. #12
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Staples? I didn't think the docs used them for this surgery anymore. I don't think I could've handled having them removed.
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  13. #13
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Great news Spring, it sounds like you are doing really well.

    Tamena, staples are still widely used. I had them after my first surgery but not the second. For me they did not hurt being taken out. It felt great to be rid of them afterward.

    Keep up the good work Spring, and take it easy. Several short walks each day and keep those bowels moving.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  14. #14
    Join Date
    Jul 2010
    Location
    Dubuque, Iowa
    Posts
    61
    Quote Originally Posted by tae_tap View Post
    Staples? I didn't think the docs used them for this surgery anymore.
    I had them with both surgeries from two different surgeons in different states. I was unaware that it wasn't common practice. My boyfriend says they look like a zipper
    Spring
    42 yrs old
    Milwaukee braced 1983 to 1989
    was told my curves would never progress
    at 19yrs old 1991, T30-L38
    2010, T38-L56--progression in one year 2011, T40-L67
    new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
    Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
    Dr. Lenke-St. Louis Mo.
    Surgery to clean out infection 2-10-12
    Revision for broken rods 1-23-14

  15. #15
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    I didn't have them with either of mine and with the second surgery I had glue. That was different from the first. But the zipper sounds like a little bling, are you sure you want them gone? Hehe!
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

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