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Thread: 25 years post surgery

  1. #1
    Join Date
    Nov 2005
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    pennsylvania
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    1

    25 years post surgery

    i can't believe i found a site for scoliosis. no one ever seems to know what i'm talking about when i tell them i have a rod fused to most of my spine. i don't know if anyone will read this or if it will help anyone else besides me but the following is my personal experience with scoliosis and how it has greatly affected my life. at 14 years old i was diagnosed with this (disease? deformation? whatever it is categorized by). i was fitted for the milwaukee brace (as well as a retainer for my teeth - what a mess i was), but being a wilfull teenager, refused to wear the brace the required 23 hours per day. can you blame me? i was a freshman in highschool and was well aware of what i looked like. since refusing to wear this brace, my curves rapidly increased - i have the "s" curves (thoracic & lumbar). i believe my lumbar curve went from 30 degrees to 60 degrees in a matter of 10 months. at 15, on january 1, 1980 i was admitted into columbian presbyterian hospital in ny and had surgery on 1/4/80. i spent 9 months in a body cast, and of course put up with the staring and questions about what was wrong with me. at one point i was so fed up with strangers asking me if i was in an automobile accident, i actually told someone i was parachuting and the parachute didn't open! for the most part i never had any problems with my back after that. however, about 2 weeks after turning 30 something happend. i have been living in pain, which has been getting progressively worse. i am now 41 years old and have been to a number of orthopedic drs, rheumotolgist and now seeing a neurologist. i'm not one to let anything get in the way of me doing what i want to do. in my head i am still in my 20's, but i move like i'm a 70 year old woman. i am a personal injury paralegal and, as such, i sit A LOT reviewing medical records which can be very time consuming. this does not help my condition at all. when i get up from my desk, i am literally leaned over and cannot stand up straight. i have muscle spasms at the lumbar curve, arthritis where the rod ends (because that's the only place i can bend since i am unable to bend at the waist), and shooting pains down my right leg & numbness in the right hip area were they took the bone graft. i know i would have been much worse off if i had not had the surgery 25 years ago, and i am thankful that my parents were financially able to get the problem corrected. i just want to know if the pain i am experiencing is normal or not. will this continue to get worse? will i end up on disability? will i end up in a wheelchair????

  2. #2
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    Uzzie4 - I sent you a private message.
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Uzzie...

    Well, it's definitely not normal, but it's also not uncommon. If you do a Google search of something like HARRINGTON SCOLIOSIS PAIN, you'll come up with a lot of information. Here are just a few references that might be helpful:

    http://www.spineuniverse.com/display...ticle2265.html
    http://www.spineuniverse.com/display...rticle976.html
    http://www.spineuniverse.com/display...ticle2266.html
    http://www.spineuniverse.com/display...rticle308.html

    I cannot strongly enough recommend that you find a scoliosis specialist with a lot of experience in treating people with prior long fusions.

    Regards,
    Linda

  4. #4
    Join Date
    Oct 2005
    Location
    Houston, Texas
    Posts
    80
    Uzzie,

    Oh my gosh! Almost my story exactly except I am a little younger. I had my surgery in 89 after wearing the back brace. I am now almost 35. This past year I have started having some pretty bad pain and stiffness. I am going to see the surgeon next week. I also try to be pretty active.. treadmill, aerobics and want to maintain a healthy lifestyle. Everytime I get out of my chair I am stiff. I don't want to live like this. I too feel like I am 20 but am starting to look like I am an old woman. My right hip and leg experience numbness and pain. I too have an S curve. I am an accountant and sit at a desk all day long. I am scared about my future. I don't have kids but hope to at some point and the future isn't looking bright. They are "fitting me in" at the doc's office next week and I am going with a list of questions. Have you been to see anyone? I have heard suggestions of having the rods removed. Please email me back. I am so shocked our stories are so similiar. I had my surgery here in Houston.

  5. #5
    Join Date
    Apr 2005
    Posts
    7

    Unhappy hey!

    Hi there, i'm 24 and i've got an S shaped spine also and have rods put in when I was 13/14 ish. the surgery left me with a hump on the side of the curvature - did you get this also or am I just unlucky?

    I'm exploring getting a consultation to see if someone can do something about my hump - no pain so far...

  6. #6
    Join Date
    Oct 2005
    Location
    Houston, Texas
    Posts
    80
    Hi there, I don't have a very noticeable "hump". If you look at my back without clothes there is an obvious curve but it isn't that bad and you can't tell anything when I am dressed. Did they say why you still have a "hump"?

  7. #7
    Join Date
    Feb 2006
    Posts
    7
    Quote Originally Posted by miss_mystery786
    Hi there, i'm 24 and i've got an S shaped spine also and have rods put in when I was 13/14 ish. the surgery left me with a hump on the side of the curvature - did you get this also or am I just unlucky?

    I'm exploring getting a consultation to see if someone can do something about my hump - no pain so far...
    I too have a hump at the very base of my neck. That area causes me no pain but I have extreme pain in about all the rest of my back. I am looking to find out why but haven't been to a doctor yet.

    Mink

  8. #8
    Join Date
    Dec 2003
    Location
    massachusets
    Posts
    13
    I too have this issue I had the surgery at 11 and now at 31 can barely get upright. I have seen my primary care twice about this over the pat 3years and they take x-rays and say they see nothing wrong. I am now insisting that I see a specialist because I fear in the next 10 years I will be wheechair bound. I am also dealing with my poor child who has this issue. I am so sick of every DR thinking they know my issues better than I. I am finding it increasingly difficult to deal with the medical field as they become more sure that if the DR is not the expert then I must not have any problem. I am 31 and feel like I am 90 when i try to stand.

  9. #9
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    I'm not sure if this is what is going on with any of you, but has anyone's doctor mentioned the possibility of Kyphosis? When your doctor x-rays you, does he do a side view? The only reason I ask this is because my 14 y.o. daughter had her fusion surgery 14 months ago and at her 6 month post-op appointment, they noticed some Kyphosis above her fusion. At her 1 yr. check-up it had progressed to about 39*. When I look at her, I don't notice a hump like you could see in her back before her surgery, but there is a noticable bending forward of her neck. Although she had surgery to correct her Kyphosis in her thoracic area as well as her Scoliosis, this Kyphosis is new and has resulted only since her fusion surgery. Like I said, this may not be the case for you guys, but just thought I'd mention it. Good luck.

    Mary Lou

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi MaryLou...

    What you're describing is junctional kyphosis.

    --Linda

  11. #11
    Join Date
    Feb 2006
    Posts
    2
    I am 29, female, 15 years post-surgery. I too have a very noticeable bump on the side of my curve that I'm pretty sure was not so noticeable before the surgery. I didn't have a choice but to have the surgery, the degree of my curve was so servere. And I haven't had any complications as of yet with the exception of some discomfort in the bone graft area to this day and stiffness in my back. After some of the things I have read about people having complications, I am thankful the hump on my back is my biggest problem. I am the only person I know who still has this after surgery. My clothes don't cover it up, either. If I were heavier, it might not be so noticeable, but I'm very thin and I feel like it's the first thing everyone sees. I wonder if there is anything to be done about it this late in the game or am I stuck with it for life?

  12. #12
    Join Date
    Feb 2006
    Posts
    12

    25 years post surgery

    I suppose I'm a lucky one... so far.

    I had surgery when I was 11... February 11, 1982 at Hershey Medical Center. I too had an "S" curve as well 37 degrees and 55 degrees I think. Anyway, one herrington rod was put in place. I had to do the body cast thing for nine months too. In my late teens I started having lower back pain. The doctor said it was bone degenerative diesease a result of having the rod in my back. His remedy was to take some advil and don't sit for long periods of time.

    I do experience pain down my legs and in my lower back, but to me that is a sign for me to go to the chiropractor. I usually see him every three weeks. If I don't... I feel it! I do experience a slight problem when I bend over for a period of time and then stand back up, it takes a while (several minutes) for my back to re-adjust.

    One doctor made a comment about my vertebre (L4) that the rod is fused to in my lower back is still mobile. That may be my blessing. According to X-rays, calcium has built up between all of my vertebre so that if the rod was to be removed, I would still not be able to bend my back.

    After reading everyone elses post on this forum, I feel quite fortunate.

    M&M

  13. #13
    Join Date
    Mar 2006
    Location
    Lawrenceville, ga
    Posts
    7
    I bet you are. you should be so lucky!!!!!!!! It's cool to hear some thing good from a person that already had surgery done. Most of people that I read from this forum after sugery they have a bunch of problems.

    I just hope I'd be as locky as you...I would get mine pretty soon.

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