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Thread: Wisconsin- need recommendations for round 2.

  1. #1
    Join Date
    Sep 2008
    Location
    Green Bay, WI
    Posts
    8

    Wisconsin- need recommendations for round 2.

    Hi, new here. I have an S curve, with a Harrington in my - well, I don't even know which vertebrae but its my middle curve. I had surgery 17 years ago, and am rather uneducated about my condition.

    Dr. Olgilvie was my surgeon then from University of Minnesota. I'm sure he's retired now, but I know he's at least no longer in the area. My 7 in scar is on my side by my rib cage. I have never read of another patient who had this type of surgery- as they are always referred to as anterior/posterior. Does anyone know what this is called? I have a 5 in rod and 4 screws.

    I have since seen Dr. Tribus in Madison, WI. Last time was about 5 years ago and he was terrible- which I have read from others on here many years ago as well, his bed side manner needs work. I have been in chronic pain for about 3-5 years. Its been so long I'm not even sure what qualifies as pain to tell you the truth. I describe it more as uncomfortable. I can remember about 12 years ago is when the bursitis started in my shoulder blade in my upper curve. Since then my Right Sacrum has given me trouble off and on over the years. The last 3 years, my under arm area is extremely sensitive. It feels bruised all the time, yet something I have learned to live with.

    I have done physical therapy, which feels like a waste of money. I do regular Tuina massages that provide a lot of relief- however, there have been occasions that I am in extreme pain during the massage. I think it is also a lot of emotional pain as I am unaware of how much pain I am in until someone touches me (again, the bruising feeling), and I then realize how stupid it was that I waited that long to go in. I now try to do a regular appointment monthly as a preventative measure.

    In the last 3-4 months, my left sacrum has been giving me pain when I sit on the couch. This is typically when I get home from 8 hrs of sitting at my desk, so I'm not sure if its an unsupportive couch I am sitting on, or the sitting is just getting to be too much and the couch is the place I am at after 8 hrs.

    Well, I have had some stuck vertebrae for about a week, in my lower lumbar, combined with extreme sensitivity around my entire pelvis- feels bruised, cramping, and sharp pain when my back arches backward even the slightest. My Bursitis in my upper shoulder blade feels like it has a camp fire under it. And there is now a sensitive vertebrae in my mid-upper spine. For the last 13 years I honestly have felt like a whiner, and that people have it so much worse than I do so why can't I just deal with it. I am so insecure to talk about it. Because I have an S curve, I actually don't look too bad, and nobody can tell anything is even wrong with me. So I feel like maybe they won't believe me if I do complain, or that I am just being a whiner and I should stop complaining. And now I just cry, and cry, and cry because I just don't know where to start or what to do. I don't want to go to work and sit- yet I am not sure how to address this with my employer, so I just sit in pain for hours and have been calling in sick regularly.

    I have been online for the past 3 days, and am overwhelmed with the lack of direct information. Where do I start, what is the latest technology, and what do I do about my job? I narrowed it down to 5 surgeons based on 5 star ratings for fusion surgeons and hospitals on healthgrade.com, and the first one I called only specializes in Knee and Hip surgery. What the heck have I been doing for 3 days???? Help, please. And thank you for letting me get that out.

    Tiona

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi Tiona...

    You actually don't have a Harrington rod, as they are only applicable to the back of the spine. What you had was anterior surgery, even though your scar is on your side, Anterior refers to the part of the spine to which the rods and screws were attached (as opposed to where the incision is made). Your implants probably look something like those in the bottom xrays HERE.

    Since it sounds like much of your pain comes from sitting for so many hours a day, I encourage you to look into a sit/stand workstation. I have one and really love that I can stand and work. I doubt I'll ever be able to stand for a full 8-10 hours, but I usually take ~5 minute sit breaks every hour or so.

    Best of luck.

    Regards,
    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.

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

    I am sorry to hear you are in such pain. I would suggest you start by seeing an experienced scoliosis surgeon, not just a regular spinal specialist orthopedic surgeon who does small fusions. You need someone who is familiar with adult scoliosis patients.

    The website Linda linked you to, the Scoliosis Research Society, also has a list of scoliosis specialists that would be a good place to find some names. Here is a link: http://www.srs.org/find/ . You can search by geographical region under Adult Scoliosis.

    Some people have to travel some distance to find an experienced surgeon. Perhaps Linda would be able to recommend someone in your area, also. I live in Oregon so I am unfamiliar with your location's surgeons.

    Good luck, and please do not despair. There are many people here who have similar circumstances who have found help. You will too.
    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
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Building on what Gayle said, there are a number of great adult scoliosis specialists in Chicago. It is worth going 3-4 hours away if necessary to see the right doctor. You can sometimes send your X-rays and records before the first appointment to see if they think they can help you. Anyway, check out Rush medical in Chicago. Dr. Hammerberg or Dr. DeWald at Rush are possibilities. I also consulted with Minindu (spelling?) Gupta, who trained under Dr. Lenke. You can search this forum for threads about Chicago. There are several doctors mentioned. Or just google "adult scoliosis Chicago". Best wishes.
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

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