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Thread: Congenital Scoliosis New Patient

  1. #1
    Join Date
    Jan 2010
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    2

    Congenital Scoliosis New Patient

    Thank you all for posting so much information about your families on the Forum. It is so reassuring to know that we are traveling a path with others in this world. About one week ago, Amaya, the 16-month old daughter of my niece was diagnosed with congenital scoliosis. Polly, my niece, has been struggling to obtain information and direction. Polly took Amaya to Dr. Paul Sponseller’s office 01/15/2010 - the date she was diagnosed.

    Polly has only interacted with Kristen Venuti, Dr. Paul Sponseller’s nurse practitioner, but she has only been able to obtain vague information. Although Polly has tried to talk directly with Dr. Sponseller, he has not returned her phonecalls. The exact anomalies were difficult to confirm on x ray. There may be a lumbar unsegmented bar and wedge hemivertebra, and possibly something thoracic. Polly and Amaya were told that the only course now is to monitor progression by returning in six months. But Polly is left not knowing the range of options for the future, or when/why any treatment shouldn't occur now before Amaya's spine becomes more fixed.

    My niece and her family are in Frederick, Maryland, and Polly would travel anywhere to get things on the right track. Amaya and her family need to understand better the anomalies and find someone who can help them understand both the merit of the immediate plan to monitor and the scope of future options. Please let us know your physician recommendations and your experiences. Thank you deeply, Aunt Darlene
    Last edited by AuntDarlene; 01-28-2010 at 05:08 PM. Reason: Greater Focus

  2. #2
    Join Date
    Aug 2004
    Location
    ny
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    1,809
    Quote Originally Posted by AuntDarlene View Post
    What do you recommend?
    Hi Aunt Darlene,

    I would recommend seeing the team of doctors at Shriners Hospital for Children in Philadelphia, led by Dr. Randal Betz who is considered on of the top pediatric orthopedic specialists in the country. In addition, the docs at Shriners are accustomed to seeing infantile as well as congenital cases. We live in NY, close to many of the so-called "top doctors" and we have good insurance, but choose to travel to Philadelphia to get our son the best care.

    Good luck to you!
    Last edited by mariaf; 01-30-2010 at 09:47 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    While I think it's a great idea to be seen at Shriner's, Dr. Sponsellor is really one of the best. I would definitely trust him to treat my child (if I had a child that needed to be treated).

    Best of luck.

    Regards,
    Linda

  4. #4
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    I think maybe your niece should get more opinions, esp. if the doctor she saw isn't very responsive. She'll need to have all the information she can in order to be able to make the best decisions possible for her daughter's care. She will probably need an MRI and other tests in order to fully diagnose her anomalies.

    You and/or your niece might want to join the congenital scoliosis yahoo group I'm in: CongenitalScoliosisSupport@yahoogroups.com There are many parents of kids who have very similar issues as your great-niece. You can find out a lot of information from them about doctors and very innovative treatments.

    Good luck with all of it!
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  5. #5
    Join Date
    Jan 2010
    Posts
    2

    Thank you so much!

    We really hadn't gotten hardly any replies on the forum, so we very much appreciate yours. We are quite baffled by the lack of the ortho's response. My niece's pediatrician finally obtained the report of her visit and, while the report was helpful, many questions remain. Still no response from the ortho's office. Polly found out that her workplace offers a service of identifying specialists and referrals. As of late yesterday Amaya has an appointment on Feb.11 with Dr. Shah in Delaware. Do you have any recommendations? Again, thank you for taking the time. Regards, Aunt Darlene

  6. #6
    Join Date
    Jan 2010
    Posts
    1
    My situation is different in that my daughter does not have congenital scoliosis, but her doctor is Dr. Shah. My daughter was 11 years old when she was diagnosed with AIS and had a 67* curve at the time of her surgery on 6/3/09. I cannot say enough good things about him and his office/clinic staff...the lines of communication were always open. I will send you a PM so we can discuss any further questions you may have about Dr. Shah.

    Carol

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