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Thread: Flat back syndrome due to harington rod

  1. #1
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    Jul 2014
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    Angry Flat back syndrome due to harington rod

    I have been in extreme pain since Christmas. Getting worse. Can not stand up or walk for very long times. I am a very active person who has been reduced to hardly being able to work. I finally went to a spine specialist 2 weeks ago. He said it was Flat back syndrome with spondylolisthesis and surgery was my only option. a pedicle subtraction osteotomy surgery. He said it was due to the rod that was put in 1979. I am so upset. I am in pain all the time. I used to walk miles now I can not hardly walk at all. I have lost height and I am hunched over. I am 56 yrs. old. I do not know what to do. Has anyone had this done? And if not, what is my quality of life going to be? Are there any other options? Doctor said no Physical therapy or shots will help. It will be a waste of time. Fusion at L5/S remove old hardware and fusion from T 12-ileum with this surgery.

  2. #2
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    Quote Originally Posted by sheila C View Post
    I have been in extreme pain since Christmas. Getting worse. Can not stand up or walk for very long times. I am a very active person who has been reduced to hardly being able to work. I finally went to a spine specialist 2 weeks ago. He said it was Flat back syndrome with spondylolisthesis and surgery was my only option. a pedicle subtraction osteotomy surgery. He said it was due to the rod that was put in 1979. I am so upset. I am in pain all the time. I used to walk miles now I can not hardly walk at all. I have lost height and I am hunched over. I am 56 yrs. old. I do not know what to do. Has anyone had this done? And if not, what is my quality of life going to be? Are there any other options? Doctor said no Physical therapy or shots will help. It will be a waste of time. Fusion at L5/S remove old hardware and fusion from T 12-ileum with this surgery.
    Hi Sheila...

    There are a lot of us here who had flatback and have had revision surgery. I can tell that there is life after revision surgery. While I'm not happy with my lack of flexibility, I'm delighted that I have no back pain.

    I don't like that the surgeon you saw said that no PT or shots will help you. I work in a spine center where most of our surgeries are complex, and we have quite a few patients who are currently avoiding surgery by utilizing injections and PT. I'm also a little concerned about having a fusion that starts at T12. If you post where you live, you'll probably get some good recommendations for a second opinion.

    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

  3. #3
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    I live in S.C. I am going to Charleston for everything, 2 hours away from Beaufort, because we have nothing I would trust going to here.

  4. #4
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    I would love to hear from people who have had this surgery. The next thing they want to do is a MRI. But the doctor said he is not sure what good pictures he could get from it because of the rod, he still says this is the next course of action to take. I am looking at getting the surgery in November cause my son is getting married and I do not to be laid up till afterwards. Any advice you can give me would he appreciated. I have not talked to anyone who has had the surgery. What can I expect afterwards? I work now, but I am having trouble doing that even. I am not sure how long I can expect to be out and how long I would have to wear a brace.

  5. #5
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    Hi Sheila...

    First, here's some names for you:

    Bart Sachs
    Medical University of South Carolina
    Professor of Orthopaedics
    169 Ashley Avenue
    P.O Box 250332
    Charleston, SC 29425
    Phone: (843) 792-1168
    Fax: (843) 792-9121

    I don't know if he does a lot of revision surgeries, but he did a fellowship with David Bradford, who is considered to be a pioneer in scoliosis revision surgery.

    Dheera Ananthakrishnan at Emory also did a fellowship with David Bradford. Serena Hu, who is widely considered one of the top surgeons in terms of scoliosis and scoliosis revision, thinks highly of her.

    Lloyd Hey in Raleigh also has a good reputation.

    in terms of what you can expect from recovery, there is a very wide range of experiences. You'll find people who were off of pain medication in two weeks, and people who were worse off than before surgery. The average length of time that people stop using narcotic medication is about 3 months. The amount of time you'll wear a brace depends on your specific case and the surgeon you choose. Some surgeons are very strict and want their patients to wear a brace for up to 6 months. Other surgeons only rarely use postop braces. After my revision surgery, I wore only a Cybertec brace (http://www.1thebest.com/cybertech-90...FStgMgodsjQA-A) for a few weeks. My surgeon tells most patients that they should wear the brace if they feel better with it on, but it's not a requirement. Most of our other surgeons use hard plastic TLSO braces that are either off the shelf or custom made.

    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

  6. #6
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    Jul 2014
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    Thank you so much. I am going to call these people ion Charleston today and get a 2nd opinion.

    I feel so lost. I am torn between surgery and living in pain. I am currently not taking pain meds. But I am ready to start because I can not work all day without being worn out with pain by end of day. I can not even walk from the car to the store entrance anymore where as before I was very active.

  7. #7
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    Jul 2014
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    Thank you so much. I am going to call these people ion Charleston today and get a 2nd opinion.

    I feel so lost. I am torn between surgery and living in pain. I am currently not taking pain meds. But I am ready to start because I can not work all day without being worn out with pain by end of day. I can not even walk from the car to the store entrance anymore where as before I was very active.

  8. #8
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    Hi Sheila...

    I know, it can be quite overwhelming.

    While I think narcotics can be helpful for acute issues, my personal opinion is that they're not a good long-term strategy. I think that many people who take narcotics long term lose their quality of life after awhile.

    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

  9. #9
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    Jul 2014
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    Thanks Linda. I am in the process of getting a 2nd opinion at MUSC. My husband does not feel this is necessary. The doctor we saw he feels was right on with his verdict of surgery due to the pain I am in and my constant hunched over walk. So we will see.

  10. #10
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    Jan 2012
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    55
    Linda

    If you have any more names in the South/Southeast , I will appreciate them.

    I am 100 miles from MUSC and saw a physician there for my back years ago and prior to Dr. Brigham. At that time he was the only doctor there who dealt with adult scoliosis.

    Thank you
    Martha

  11. #11
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    Oregon
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    Quote Originally Posted by sheila C View Post
    Thanks Linda. I am in the process of getting a 2nd opinion at MUSC. My husband does not feel this is necessary. The doctor we saw he feels was right on with his verdict of surgery due to the pain I am in and my constant hunched over walk. So we will see.
    Hi Sheila,

    I am glad to see you are getting a second opinion. I think it is always a very good idea before this type of major surgery. Each doc may have a slightly different approach to your surgery and you will be able to pick your surgeon based on which one you feel is most skilled and are most comfortable with. I'm not sure why your husband would not think it necessary, but it is your back so please do pursue the second opinion.

    Good luck with everything. I know approaching this type of surgery is terrifying, but choosing a life of pain where you can't stand up straight is no way to live.
    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

  12. #12
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    Jul 2014
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    I have since found out that there are no doctors who do the revision surgery in the south.

  13. #13
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    May 2010
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    Hi, I had Flatback to the point I was bent over to the right and forward 45 degrees. I had Dr Lenke in St. Louis mo. do mine. Thirteen hr. Drive one way, but he only takes the most seriously deformed. I had already had three back surgeries.(two revision). He got me standing back up and it's been a year and three mo. Just know that everyone is different in their recovery. Good luck to you~~~ Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  14. #14
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    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by dixiesmommie View Post
    Hi Sheila,

    I had Harrington rods, flat back and revision surgeries. My struggle for my most recent surgery was also finding a surgeon who would operate on adults. I found my surgeon by contacting my original surgeon who did my original surgery and first two revisions. He was able to put me in touch with a younger surgeon who operates on both children and does adult complicated cases. Perhaps contact the office of the doctor who does scoliosis surgery for children in your area and ask who they refer adults to.

    Be careful and make sure the doctor you choose is part of the National Scoliosis Foundation.

    I recently visited a pain management doctor closer to home in hopes of pain relief without medication. He suggested sugar water injections. When I ran it by my surgeon he totally said NO. This pain doctor was also scheduling physical therapy which my doctor did not approve. We have to be our own advocates and question everything before we move forward with treatment.

    Good luck in finding the right surgeon.
    The National Scoliosis Foundation is the group that sponsors this forum. I assume Dixiesmommie means the Scoliosis Research Society. And, while the SRS is the best place to identify good surgeons, there are potentially good surgeons who are not members.

    --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

  15. #15
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,607

    Sugar water injections

    Quote Originally Posted by dixiesmommie View Post
    Hi Sheila,

    I had Harrington rods, flat back and revision surgeries. My struggle for my most recent surgery was also finding a surgeon who would operate on adults. I found my surgeon by contacting my original surgeon who did my original surgery and first two revisions. He was able to put me in touch with a younger surgeon who operates on both children and does adult complicated cases. Perhaps contact the office of the doctor who does scoliosis surgery for children in your area and ask who they refer adults to.

    Be careful and make sure the doctor you choose is part of the National Scoliosis Foundation.

    I recently visited a pain management doctor closer to home in hopes of pain relief without medication. He suggested sugar water injections. When I ran it by my surgeon he totally said NO. This pain doctor was also scheduling physical therapy which my doctor did not approve. We have to be our own advocates and question everything before we move forward with treatment.

    Good luck in finding the right surgeon.
    "Sugar water injections"..... Be afraid be really afraid. You did what you needed to do, which was check it out before you do it. It is also reasonable to ask you MD to "send you to the medical literature at supports the treatment/medication". There are some people on the forum like me that have researched the treatment/medication to death, before you agree to it. One doctor downloaded a chapter in a book on Adult Scoliosis for me.

    There might be a time that a person would choose an experimental treatment/medication for good reasons. One needs to know that it was experimental. But, the medical provider must tell you the alternatives to whatever treatment you choose.

    Be an I formed consumer in the health care arena.

    Susan
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

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