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Thread: Harrington Rod Problems after 25 years?

  1. #31
    Join Date
    Aug 2006
    Posts
    1

    harrington rods and flatback

    Hi, all
    I don't know if anyone has checked these posts in a while. Seems the last post was quite a long time ago however I'm hoping to start the thread going again.

    I, too, had surgery with Hugo Keim. I was 22. As with so many that had Harrington Rod surgery, I am experiencing Flatback. I had a thoraco-lumbar curve and spondlylolisthesis. Dr. Keim did both surgeries at the same time.

    My rod was broken after 6 months and part of my fusion didn't heal so about 5 yrs later I had a 2nd surgery at Hospital for Special Surgery with David Levine. He removed the Harrington Rod and put in 2 compression rods.

    I was hoping to share experiences with others that have the pain from flatback years later.

    Jill

  2. #32
    Join Date
    Aug 2006
    Location
    Indiana
    Posts
    10

    Flatback friend

    Hi Jill,

    I had my first surgery - T4-L4 - 30 years ago, the second one just 18 months ago. My origonal surgery caused the flatback syndrome and part of the second surgery was to correct it so the stress above my fusion was relieved. This was done while my rod was being removed and L5 was being grafted into the fusion. My surgeon did 2 wedge osteotomies (pie-like cuts in the vertebrae) then cranked a 30 degree curve into my lumbar spine. It absolutely decreased my neck/shoulder/scapular pain by about 75% but I still have some ache at the osteotomy site, sort of like a knee in my back when it's real bad, which thankfully isn't very often. I'm fused to L5 now, with only one segment left mobile and, as of a month before the surgery, it had a perfect disc.

    Before the surgery the only thing pain management had to offer was cortisone shots and physical therapy with a home exercise program which only offered me minimal relief. I used a lot of OTC meds ... Tylenol, motrin, etc. Used a lot of those stick on heat wraps, rub on gles and anything else that promised to offer even a little bit of relief ... massage therapy, glucosamine, ANYTHING! Any relief was always temporary.

    I've just found this site and I'm buzzing around like a little bee. I've been wondering where all the scoliosis patients are ... so absolutely sure that I'm not the only one struggling with these challenges. Now I know I'm not alone. Hope you find all the information you're looking for.

    MaryLou
    45 y/o female, retired RN
    1st scoli surgery '75, double curves, 56 & 52 degrees with Harrington Rod T4-L4.
    2nd reconstruction '05, removal of rod, pull L5 into fusion, secured with 12 screws and 2 plates.
    Presently 18 month post-op, doing relatively well.

  3. #33
    Join Date
    Aug 2006
    Posts
    3
    My sister sent me the link to this site and when I read all the posted messages, I started to cry. So many of you have the same issues I am experiencing and I was happy to find out that I am not alone. I have been made to feel that much of what is happening is all in my head by doctors who are supposed to know what they are doing!

    I had my surgery at 16 back in 1973 at Los Amigos Hosptial in Downey, California. I don't remember the name of the surgeon. He was the chief of orthopedic surgery. By the time it was discovered I had scoliosis, it was too late for bracing or other methods to correct it. I had a 45 degree angle curve that was rotating my left rib cage dangering my lung and heart. I was told if I didn't have this surgery, I would die. That my life expectancy would be 40 and that the last few years would be in extreme pain. I was 16 and terrified! My Harrington Rod was put in and I wore a Milwaukie brace for 7 months.

    I was amazed and blessed to have the surgery and up until now, I have not experienced too many problems. I am 49 years old and for the last 4 years have gradually had problems. I experience a tingling/numbness in my hands and feet 24/7 for the last few years. I have pain in my legs making it very hard to walk from a sitting position. Once I take a few steps and get things going, the pain usually subsides. I have experienced sciatica from time to time making it very painful to drive the car when pushing down on the gas pedal. I have flat back as many of you report. I am on many pain prescriptions and take them only when the pain is just too much. Sleeping at night is usually good except when I try to turn over. I experience dizzyness frequently. I belong to Kaiser (a PPO) and finally got a referral to see an orthopedic doctor. He refuses to talk about the rod. He ordered x-rays and the results were that I have a severely degenerated disk between L4 and 5. I have bone spurs on and around the rod and metalic reduction. I have been referred to physical medicine to discuss treatment options. It is suggested that I have a series of epidural's. I go on September 14 and really hope that I will receive treatment that will finally help!

  4. #34
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    Vicki,

    I'm 57 and have a 75 angle curve with significant rotation of my left rib cage and I'm not dead yet. As a matter of fact, I'm doing quite well. I become more infuriated when I read these posts of people being told they're going to die, have a shortened life or end up in wheelchairs unless they have surgery. I'm sure hospitals and physicians make a lot of money performing these costly surgeries, but for a surgeon to suggest that you will die unless you have surgery is beyond ethical.

    I wish you well.

    Chris

  5. #35
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    Vicki,
    I suggest that you raise holy he** with Kaiser to get you a QUALIFIED ortho that deals with adult scoli patients. Don't allow Kaiser to make you feel like it's all in your head or let them give you a doc that doesn't know how to treat an adult scoli (like the one you have now) patient. In many cases a doc's ego will get in the way of telling you that he doesn't know how to treat you. All of the PT in the world will not do a thing for you if you have flatback and all of the problems it causes. Also, chances are that injections will not be a long term fix either and in some cases, not even short term fix. You have to be your own best advocate, which can be really hard, especially if you have had years of being told that it's in your head. Bring someone with you to back you up and if necessary ask to see the hospital CEO.
    SandyC

  6. #36
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Vicki...

    I think it may be very difficult for you to find anyone at Kaiser to handle your case. If there's any way you can switch to another plan, I would encourage you to do that.

    By the way, you mention that you have a PPO from Kaiser. I didn't know that was even an option. Can you really refer yourself to any doctor within Kaiser?

    --Linda

  7. #37
    Join Date
    Aug 2006
    Posts
    3

    Grateful for your suggestions and encourgement

    Chris, Sandy and Linda. I just want to say thank you for your time and encourgement. You have all given me strength to pursue a doctor that will give me the attention I deserve. You are right Linda, Kaiser is not a PPO, my mistake. I can demand that I get another doctor and I will continue to do so until I find someone who will give me the medical attention that I need. In the meantime, I am going to do my best to lose weight and add walking to my routine. You guys are the best!!

  8. #38
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Chris I had an 85 degree thoracic curve which was interfering in my lung function plus a lot of other internal organs were being pushed around so to say. I definately had to have the operation as I would have died, due to being unable to breath properly for a start.
    I saw a lady, younger than me( by about 6 years) about 12 months ago who had thoracic scoliosis and she told me that she had to take her oxygen everywhere she went. Her curve was really bad. I asked her due to my being a sticky beak I guess and she told me she did not have the operation but I had already guessed that.
    Therefore even with the problems I am having now I am so glad I did have it done, she couldnt have children either, didnt feel I had the right to ask was it because of her twisted body.

    MaryLou I could have written your post as we are just so much alike with our probems before you had the revision surgery. Just so good to read, not for you to go though I know, but to know we arent alone.

    Vicki I wish you all the very best on September 14th and hope you get some answers. Once again I felt like reading my own story.
    Macky
    Last edited by macky; 08-21-2006 at 01:47 AM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  9. #39
    Join Date
    Apr 2005
    Posts
    913
    Quote Originally Posted by CHRIS WBS
    Vicki,

    I'm 57 and have a 75 angle curve with significant rotation of my left rib cage and I'm not dead yet. As a matter of fact, I'm doing quite well. I become more infuriated when I read these posts of people being told they're going to die, have a shortened life or end up in wheelchairs unless they have surgery. I'm sure hospitals and physicians make a lot of money performing these costly surgeries, but for a surgeon to suggest that you will die unless you have surgery is beyond ethical.

    Chris
    I know more than a few people who didn't get surgery with large curves who are doing quite well. One who has a lumbar curve who's doctors told her that she should have the surgery when she was young or she would be in a wheelchair by now(she's late thirties), and she would never be able to have kids. She has two children and in relatively no pain, she keeps in shape and it's what helps her. I think even if there are doctors who make such drastic statemnts still, they are more careful nowadays, as nobody can be sure at 100% of someone's predicament.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  10. #40
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Do you think there would be any difference between lumbar and thoracic curves?? I mean as far as long term problems go when people dont have the operation.
    Just wondering as the post by you sweetness was just so good and I am so happy for the woman. Good on her.

    Macky
    Last edited by macky; 08-21-2006 at 01:55 AM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  11. #41
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Macky,
    I think it probably is a difference between lumbar and thoracic. My daughter (14) has a 52 lumbar curve with smaller 30ish thoracic compensatory curve. Her ortho. surgeon told us there is nothing in the medical literature that dictates that she must have surgery, that she is in no danger of lung or heart problems because it's a lumbar curve. He said the only reason to get surgery now would be for better correction vs. having it later in life, but pointed out that having surgery also has it's problems due to degenerative changes to the vertebrae down the road as I believe, many of you are having now. He said many people live with scoliosis with very little problems (Chris) but others will definitely have arthritis later in life and that may be a reason to have surgery. When I told him I would like my daughter to make that decision herself as an adult, he was very agreeable to that, so I think it really does depend on the location of the curves.

  12. #42
    Join Date
    Apr 2005
    Posts
    913

    Lumbar vs Thoracic

    From what I read, lumbar curves affect the digestive system more and some doctors think it can affect leg numbness or parylisis, but I don't know how severe the curve would have to be. As far as the thoracic, it does affect the digestive system but more the oseophagus(pardon me, sp?) and the lungs/heart, but that is supposed to happen with over 80 degree curves, and again not with everybody. I read in a book that with a 60 degree curve it's rare, but nothing is set in stone.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  13. #43
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Thankyou so much for you answers, they helped me understand thngs a bit more. Sherie, I think that is a wonderful thing you are doing for your daughter
    letting her decide when she is older what she would like to do.
    Sweetness (me, with a bit grin) loved that saying "nothing is set in stone" how true that is, thanks again for your time and info. xx

    Macky
    Last edited by macky; 08-23-2006 at 02:46 AM. Reason: spelling again!!
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  14. #44
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Macky, thanks for the encouragement. I question myself everyday if I'm doing the right thing. Her scoliosis is aggressive so there may be a point when we just have to say it's time for surgery but we aren't there yet. Her dr. said even in her 20's, she should get good correction. I'm holding out in hopes that in the next 10 years there will be advancements in surgical procedures/hardware. Actually, I'm hoping they will offer a fusionless technique that is currently being researched (shriner's philly and the Japanese are studying wedge osteotomies and doctors in Utah are testing fusionless techn. on goats). It's a long shot, but we won't know unless we wait!
    Have a great day, Sherie

  15. #45
    Join Date
    Sep 2006
    Location
    Lake Charles, LA
    Posts
    6
    Hi there, this is my first post and I'm so glad I found this board! I am a 32 yr. old female who had the Harrington rods put in when I was 12. Over the course of 10 yrs or so after the surgery one has broken and the other had defused from the top. At the time I found out I was told it was ok to leave it like that or I might possibly could have them taken out without them being replaced. Well, I have been having quite a bit of back pain (mostly in the lower part) and a pinching feeling where the broken rod is if I turn or bend the wrong when I try to straighten back up. So my husband encouraged me to go have it checked out. I finally did that this past Monday. I was told that going by the x-rays I brought in from 10 yrs. ago and looking at then new ones he had just taken I went from 44 degrees to 55 degrees in the past 10 yrs. He told me I would more than likely have to have the surgery done again. I have an appointment on the 28th of this month in New Orleans to see a specialist. I just never thought I would have to go through all this again.
    At least now I know I'm not alone here and there are people who know exactly the pain I have come to live with.
    Also, If anyone has any advise or suggetions for me would be great. I'm trying to put together a list of questions to ask the doc. when I go.
    Last edited by Paula H.; 09-01-2006 at 11:22 PM.
    Paula

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