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Thread: Severe Scoliosis and Prune Belly Syndrome

  1. #1
    Join Date
    Aug 2007
    New Berlin, WI

    Severe Scoliosis and Prune Belly Syndrome

    I haven't been on in a while due to the arrival of my first baby girl I am 28 yrs old and have been diagnosed with severe idiopathic scoliosis. I have been fused with cd rods fro T4 to L4 when I was about 9 yrs old. My upper curve is 45* and my lower being 70*. I wore the Milwaukee brace for a few years before having the surgeries. I have had 5 surgeries. 1 where they took out a rib and put it in my back and then a 2nd one when they placed the rods. I then had 2 more to lengthen them and then finally the fusion. I also have Prune Belly Syndrome. With basically means that I do not have stomach muscles and my belly protrudes making it appear that I am pregnant. I never had horrible back pain growing up. I mean I did have some but it was tolerable and since I was in a brace since I was just a few months old, i thought it was normal. Now I am 28 (with a 16 month old running around) I have such bad pain. It has gone into my hips, legs, neck and of course shoulders and lower back. I am to the point where if I am not in pain I am uncomfortable. I have trouble sleeping due to the pain and being uncomfortable. I am also getting really bad migraines from the neck pain/stiffness. I am still having trouble finding a doctor that doesn't just tell me to deal with it. I have been told that my whole life and have, until now. It just seems to be progressively getting worse. My question is for anyone who has had that fusion 20+ years ago and how are you feeling. Also, is there anyone else who also has the Prune Belly Syndrome? After doing some reading, I have found out that the PBS had most likely caused my scoliosis. Anyways, I am just looking to see if anyone else is in the same boat as me and has any advice. chest.jpgchest4.jpgpelvis1.jpg

  2. #2
    Join Date
    Apr 2010
    Waterloo, IL
    Congratulations on the birth of your little girl.

    You have been through a lot, but I can't imagine that you have to live with such pain at your young age. I highly recommend Dr. Lawrence Lenke from Barnes Jewish Hospital in St. Louis, MO. He is the current president of SRS and only takes severe cases of scoliosis due to his busy schedule.

    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.

  3. #3
    Join Date
    Sep 2003
    Northern California

    I think you need to find a specialist who has a lot of experience with patients who have had prior fusions. I'd start here:

    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

  4. #4
    Join Date
    May 2009
    personally, i think doctors who tell patients who are in severe
    pain to "deal with it" should be shot....
    at the very least, they should have to live with excruciating pain for a year, then come
    back to those same patients and apologize!

    please find a scoliosis surgeon who specializes in revision surgeries, as Linda who has seen many other patients who need surgery redone,
    and who does not believe his/her patients should just "live with" the pain!!


  5. #5
    Join Date
    May 2010
    Hi, I had revision in May & June, Johns Hopkins, I did very well, and back to work as hairdresser 2 days a week.(I am 68), I did not know that Prune Belly S. was a protruding belly, but I also looked about 5 month's pregnant. after surgery my belly is flat. before surgery I was bent over a little more then your pictures, and over to the right side. now that it is over I am so glad that I had it done. good luck Lu

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