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Thread: Teenager with Scolioisis & no support

  1. #1
    Join Date
    Apr 2010
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    Waterloo, IL
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    Teenager with Scolioisis & no support

    My sister-in-law just told me about a student of hers who has severe pain from scoliosis and can't participate many days in the P.E. class because of it. The girl went to my nephew, who is a chiropractor, to get some relief. He told her that her scoliosis was so severe that he couldn't help her. Now this is what upsets me . . . her parents told her that she was way too young to consider back surgery! I understand that it's a tough decision, but I would think they would at least take her to a spine doctor for an opinion. My sister-in-law is going to give her Dr. Lenke's web site, but without parental support, it would be difficult to make an appointment.
    Karen

    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.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  2. #2
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Karen that really sad
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  3. #3
    Join Date
    Aug 2010
    Location
    Florida
    Posts
    225
    Sometimes, I'm sure, parents can go into denial. I wonder if your sister-in-law might try to contact the girl's parents directly, explaining about you and offering to give them some input, if they would be open to it. You wonder where the pediatrician is in this deal.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  4. #4
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    Sep 2003
    Location
    Northern California
    Posts
    7,125
    Moved thread to Parents forum.
    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

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    how old is the child?
    i would just caution your sister in law...
    as a special ed teacher and licensed social worker in NYC public schools (retired) it can be dangerous to give kids medical info...
    parents can accuse teachers and other school staff of "interfering" in their child's life, education, etc...
    it can get staff into a LOT of trouble...

    i am not being callous...
    i tried to help lots of kids both as a teacher and a social worker....
    i just know how some parents can be....
    rather than appreciate, they can resent, and complain bitterly to higher ups....
    especially since these parents have already allegedly said they do not want their child to have surgery now...
    the parents have the medical decision rights until the child is 18...
    i doubt that a surgeon would see this child seriously without parents...
    and the parents' insurance info would be needed...

    jess
    Last edited by jrnyc; 10-15-2011 at 02:29 PM.

  6. #6
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    Waterloo, IL
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    Jess,
    I'm sure you're right. My sister-in-law is a retired special education teacher who now substitutes. I know she will do no more than give her the web site so that she would at least know there is hope for her condition when she is old enough to have her own insurance.
    Karen

    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.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,125
    One of the most memorable people I've met during my years of scoliosis support, is a young girl whom I met probably 20 years ago. She had the largest rib hump, by far, that I'd ever seen. Her mother had been taking her to a chiropractor for treatment. The chiropractor had convinced the mother that the child was getting better. (The brain is truly amazing in terms of letting people only see what they want to see.) I'm not sure how it all came about, but the state actually stepped in, and forced the mother to bring her child to an orthopedic surgeon.
    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

  8. #8
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    Apr 2010
    Location
    Waterloo, IL
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    Thankfully, my nephew knows his limits as a chiropractor and recommended she see an orthopedic surgeon.
    Karen

    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.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    was that in CA, Linda...???
    i VERY rarely saw the state of NY step into anything...
    in the public schools, we had kids with NITEMARE parents who kept their parental rights!!
    it was amazing, discouraging, disgusting!
    it took an army of people years of documentation to try to prove anything against parents who
    should never have had kids...who abused them, neglected them...
    neglect was a BIG thing...hard to prove, hard to do anything about!

    i hope this poor kid gets a job and gets her own insurance soon...
    even so, that is a tough road for a young person to handle....
    maybe something can snap her parents out of their denial....

    jess

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,125
    Quote Originally Posted by jrnyc View Post
    was that in CA, Linda...???
    Yup, California.
    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

  11. #11
    Join Date
    May 2009
    Posts
    3,745
    i suspect CA steps in sooner than NYS does...

    jess

  12. #12
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    Mar 2005
    Location
    novato, ca
    Posts
    83
    It is very hard for some parents to see what is going on with their children. They might be in denial because the child has other problems and this is just one more thing or maybe because it will limit the child and they won't be "perfect". I would suggest that you introduce them to this forum and let them hear from parents who have been through it. Maybe they need to see some young children who have had different surgeries to let them know it will be ok.

    ~Emily

  13. #13
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    Apr 2010
    Location
    Waterloo, IL
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    Thanks, everyone, for your replies. I have passed your suggestions on to my sister-in-law.
    Karen

    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.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  14. #14
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Lightbulb not treating a severe curve???

    In my mind it looks like child abuse!! Some parents have been prosecuted for not treating a child with cancer. Does the child have to get cancer???
    I wonder if an anonymous call to social services would work?
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  15. #15
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    May 2009
    Posts
    3,745
    as a social worker, i can tell you that it is highly doubtful this qualifies as child abuse, despite what those on forum
    may think...
    many parents do not opt for surgery for their kids, and this young person will have the right to do as she
    pleases once she is above legal age..though paying for her own health insurance so young may be hard...
    child abuse must be documented to be proven in court...
    i had times when i fought with principals about children i had reason to suspect were being abused, called them in to the state
    against the principals' wishes, even when the child had visible marks on their bodies!
    it is not quite as easy as it sounds...
    and parents can make all kinds of pleas before a judge as to why they think surgery should wait..
    as witness the religious types who believe in praying away disease rather than treating it medically....
    those take time to get thru the courts when some think it should be a slam dunk case!

    jess

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