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Thread: New Parent with Questions

  1. #16
    Join Date
    Oct 2007
    Posts
    99
    Hi 2kids,

    The fact that your daughter is 12 with a risser of 0 and has not started menstruating is good, in the sense that you have time to look into your various options. There are many. If your daughter is T24 and L22 she probably will need some type of intervention to prevent the curve from getting worse. There are doctors in the US that work with Spine cor. You can find a list at spinecorporation.com. I believe there is a doctor at John Hopkins in Maryland who uses the spine cor brace. Dr. Sponsellor???

    You can also look into vertebral stapling. A surgical procedure that acts as an internal brace. Get info at the support site which Mariaf gave in a post before this one.

    Both of these options are available here in the USA. Many people on this forum can help you with information on these options. There are also many people on this forum who are using the more traditional hard brace. I am sure they would give you input as well.

    I wish you good luck in your search for information to help your daughter. There are options for you. One will sit better with you than the others.

    Best,
    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  2. #17
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    scoliosis

    I would certainly see a pediatric orthopedic surgeon and or other specialists if needed and get a second opinion. Scottish Rite and Shriners do not charge their patients regardless of income and insurance. I highly recommend Scottish Rite. A doctor can refer you and it is a great hospital. It took us 3 pediatric orthopedic surgeons, 2 orthotists, our pediatrician, and the school nurse before we to detect other medical issue regarding my daughter. Mri is not usual proceedure but as said in above replies to you, can be done to rule out spinal cord issues, etc. It may not be needed in your case. It was done for us but not right away. My daughter had nothing but scoliosis and rapid progression at age 12 and finally after going to Texas Scottish Rite Hospital for Children they saw it was not quite typical right thorasic curve. It was very high and no compesating curve. We found out she had other medical needs and this was the first out of 3 orthopedic surgeons to do MRI and detect spinal cord issue after 6 months and going out of town to two doctors. We went to Shiners in Erie, PA as this was the only pediatric orthopedic surgeon who did hard brace and Spinecor, which was the brace of our choice. He said no brace would hold her curve, but didn't do MRI. That prompted me for another opinion back in my area. He agreed but went one step further with the MRI. My daughter had Chiari I Malformation and Syringomyelia, which was a spinal cord issue. It caused the scoliosis. You can view info on it on www.asap.org . She had the chiari surgery in Dec 2006, and it went well. Go with your gut and get what you need. We still had to do scoliosis surgery, and wished I had gone to Scottish Rite sooner, but got her surgery for the spinal cord issue done, which prevented further medical problems, and the spinal fusion surgery was done in Sept 2007, and my daughter now 13 is doing great. I recommend Spinecor brace for ideopathic scoliosis, and go to the Spinecor thread with great support of those brace users. Don't hesitate to seek more medical help, as if you can prevent surgery great, if not there is great support and doctors out there.
    Last edited by Mom37; 11-24-2007 at 06:56 PM. Reason: adding

  3. #18
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    I agree with Mom37 about getting a second opinion. You are not far from Philadelphia. I would strongly suggest the Shriners Hospital there. The toll-free number is 1-800-281-4050.

    Please don't think that because the care is free that it is in any way inferior. In fact, just the OPPOSITE is true.

    We have very good insurance and live in New York City (where there are tons of so-called top doctors) but we choose to travel to Philadelphia so our son can be treated by Dr. Betz and his team because, after much searching, they were the BEST we could find anywhere.

    Good luck!
    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/

  4. #19
    Join Date
    Jul 2006
    Posts
    20

    To 2 kids

    HI,
    I am on the other forum of which Maria informed you, but sometimes here. I noticed that you are in MD, and said that you have some parent connections in VA. I am also in VA, my son has scoli--and we have been dealing with this for almost two years. I can sympathize with the tough decisions you are going through. MRIs are imperitive and hold important answers regarding the scoliosis being congenital or idiopathic..it is a very smart thing to do..and as soon as possible.We travel to PA Shriners for our care and it was the BEST decision we have made thus far. If you would ever like to speak personally/email please send me a private mssg here, and I will provide my email address. Also, I have a 12 yr. old daughter as well...I imagine during this tweenie stage that this is the last thing anyone needs to endure. HAng in there, and I will help/advise/support in any way.
    Best
    Adele
    Last edited by milesmom; 11-27-2007 at 03:41 PM.
    Mom of Miles (2 1/2 )
    Diagnosed at 14 mo.
    start curve 30*/Prog. to 37*/26*CURRENT
    TLSO braced. VBS tentative for 2008
    Patient of Dr. Betz, PA.
    mom to Allie (12) and Ben (10)

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