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  • catch 22

    Hi
    My son is five and under mr webb at nottingham uk. They want to do surgery but now it is a catch twenty two position as his lungs are not strong enough to recover from the anesthetic, to get them stronger he needs the surgery to stop his lungs and heart being squashed. Anyone else been in this position? Hiis next appointment with mr webb is at the end of this month and I dont klnow what I should be asking or demanding?
    Great forum by the way.
    Bye for now
    lori.

  • #2
    hi lori,

    first off, i would like to welcome you to the forum and ask a few questions about your son.

    what are his curve(s)?
    how long has he had scoliosis?
    what is his current treatment -- brace or casting?
    what type of surgery is mr webb suggesting -- grow rods or veptr?
    does your son have any other health issues besides weak lungs? is this due entirely to the scoliosis or to something else?

    i don't mean to be nosy, just curious. have you considered sending your child's information to another specialist for a second opinion? i would be particularly interested in sending your information to a specialist who does the veptr or titanium rib. i don't know who does this in the uk. there is another forum that is dedicated to this procedure to experience parents of children who have gone through it and are going through it and the new parents who are nervous of their children's upcoming surgeries. you might want to go there and post your questions:

    http://www.veptr.com/

    click on message forums.

    hope this helps!
    deshea
    mom to lucas (4 1/2 yrs old, diagnosed with scoliosis at 18 mos at 68o/45o, tight/fatty filum detethering surgery at 22 mos, braced for a year, casted for 2 years, currently out of cast 17o/10o and in cast 8o/4o)
    and ruby (almost 2!!)
    north of boston, ma

    Originally posted by mikeysmum
    Hi
    My son is five and under mr webb at nottingham uk. They want to do surgery but now it is a catch twenty two position as his lungs are not strong enough to recover from the anesthetic, to get them stronger he needs the surgery to stop his lungs and heart being squashed. Anyone else been in this position? Hiis next appointment with mr webb is at the end of this month and I dont klnow what I should be asking or demanding?
    Great forum by the way.
    Bye for now
    lori.
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

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    • #3
      Hi Lori,

      I posted to your other thread. Hopefully you can post an update and let us know how things are going.

      My best,
      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/

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