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Thread: Scoliosis & Pectus Excavatum

  1. #1
    Join Date
    Oct 2003
    Location
    Seattle, WA
    Posts
    1

    Question Scoliosis & Pectus Excavatum

    Hello:

    My daughter has a both scoliosis and pectus excavatum. Pectus Excavatum is a malformation of the sternum and ribcage, causing them to sink inward. All the research I have done says that of the 1/2000 girls to get PE, 35% percent of those have scoliosis as well. CT scan showed that Nikki's was pretty severe, but we were lucky and it was only putting pressure on her heart - not crushing it and her lungs were very restricted but not irreparably compromised. She had surgery to correct this in July. The Nuss procedure; they inserted a metal bar into her chest pushing out the ribs and sternum to the position they should be in and will remain there for two years. It was very painful for her and she lost the whole summer healing all the microtears and fractures to her ribs.

    In May/June her scoliosis was measured at 33 degrees and was almost completely thoracic. Our ortho discouraged the use of a brace saying they don't seem to really work. Nikki didn't want a brace so she was relieved. But the first time I looked at her back after the surgery I could tell things had drastically changed. I called the ortho and we went to see him in Sept. He was a little annoyed at my calling him so urgently to get her seen but after looking at her x-ray his attention turned to her, as she was measured at 45 degrees. There are now slight counter curves both cervical and lumbar (I don't know the degree).

    Now all of the sudden he wants to put her in a brace in hopes of holding off surgery. I asked him about the connection with the PE and scoliosis and although he admitted that he had never seen a patient after having that surgery, he was sure there were no connections.

    I saw the change the day after her surgery and I really think there are some circumstances beyond basic idiopathic scoliosis.

    So my questions are: Has anyone else had this kind of experience? Are there any specialists who deal with this type of situation? Will a brace help her now? Does surgery need to be done before the bar comes out so her chest correction doesn't go back? I am so frustrated. Can anyone help?

    I am hopeful-
    SeaWray
    Until next time~
    SeaWray

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Seawray,

    My son has severe congenital scoliosis, with a slight pectus excavatum. I have no direct experience with the surgery your daughter had, but some of what you wrote made me think of questions that you could (or should) be asking the surgeons...

    Putting her in an external brace would further limit her heart and lung function. The braces have to be quite tight in order for them to have any benefit. My question would be about the usefulness of the brace - weighing the pros and cons of having the brace. I'd be VERY careful about that.

    You didn't mention how old your daughter is (or if you did, I didn't pay attention well enough). If your daughter is in her pre-teen or early teen years, then having a sudden progression of scoliosis is not unusual. It may or may not have anything to do with the pectus issue, or even the surgery. Like you said, I'd be searching for someone who is well-versed in both orthopedic issues. Where are you located? Maybe someone could refer you to a good ortho in your area. I've heard of a great pectus doc in the LA area, not sure what his name is.

    My point is that it sounds like you need to find many more answers to your daughter's situation before you agree to any further treatment. Please keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Jun 2006
    Posts
    1

    my daughter

    my daughter had the nuss procedure last week. her left side shoulder and hip are drawn toward each other now. could the because of pain,muscle spasms? or have this procedure made my daughter scoliosis worst? can you help me. myself and my wife are sick over this.

    thanks,
    ber

  4. #4
    Join Date
    Dec 2004
    Posts
    236

    ?

    Hi, I just saw your thread, and thought I'd offer our experience to you, and if you wanted to ask any questions, please do! I. along w/my three daughters all have PE, I had it corrected when I was child; my daughters have not. One is a post-fusion kid (braced, but no success), and my other one is now in a Spinecor Brace, less restriction on lungs and heart. I've asked numerous docs about the PE/scoliosis connection, never got any real answers . . . .

    Thanks for posting. pat

  5. #5
    Join Date
    May 2007
    Posts
    2

    Post Scoliosis/pectus/genetics

    I work with an orthopedic surgeon in st. louis and he is doing genetic research on pectus and scoliosis. We have found a family that has both of these diagnosis and a possible genetic marker. We are always looking for other families that would be willing to participate.

  6. #6
    Join Date
    Feb 2008
    Posts
    2

    12-yr-old daughter with Scoliosis and Pectus Excavatum

    Hi -

    I have a 12-yr-old daughter with pectus excavatum who was just diagnosed with scoliosis. We haven't had our initial appt. with the orthopaedist yet, but the pediatrician feels she'll probably need bracing or surgery. My daughter hasn't had surgery for the PE - just monitoring of her heart & lung function, which is good so far.

    A nurse at Children's Hospital L.A. (where we set up our appt) said there's no link between PE and scoliosis, but I'm finding quite a few kids on the internet who have both. For those of you who have kids with both, how are they doing? Is there a problem with bracing because of the pressure that's already placed on their heart & lungs from PE? My daughter has already had her big growth spurt, so they may not even feel bracing is an option at this point.

    We're just trying to find some people like us...

    Thank you so much -

    Cathy

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,751
    I just wanted to add that I know a boy who had VBS (vertebral body stapling) last year for scoliosis while he actually still had the bar in from the pectus surgery.

    Dr. Asghar at Shriners Hospital in Philadelphia is the one who did this child's VBS. The pectus surgery had been done earlier somewhere else. I recall the mom telling me that her son was not a good candidate for bracing because of the bar in his chest.

    Perhaps you might want to consider VBS, provided of course your daughter is a candidate.

    Ironically, to the best of my memory, this boy's curve was around 45 as well when he had VBS and it corrected to the 30 degree range.

    The hope with VBS would also be avoiding fusion.

    Good luck.
    Last edited by mariaf; 02-28-2008 at 03:18 PM.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  8. #8
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,092
    Both my twin daughters had mild-moderate PE as infants and toddlers. It corrected. They have no obvious depression in their chest now at 13.

  9. #9
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
    195
    the only link between pectus excavatum and scoliosis that i know of is marfan's syndrome. it's a genetic disorder that affects the connective tissues and often the aorta in the heart... but it sounds like your daughter has had her heart monitered and it's ok, so this might not be the right link... thought i'd mention it though
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

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