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Thread: frustrated

  1. #16
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Thank you! I will definitely be contacting Janet at Shriners. After looking it up it's only 5 1/2 hours away!

    Leah - she did have an MRI last year and they ruled out any spinal issues thank goodness.

    Pooka - both doctors that she has seen are orthopedic surgeons. I am pretty sure Shriners will suggest the same treatment she is receiving right now - bracing unless something changes dramatically. I am trying to prepare for where I believe we are headed. I am hopeful that the bracing will be effective but am anxious that she has progressed from 31 to 42 within 18 months. I know that sometimes they change much faster but she turned 10 this month and has so much more growing to do. I am mostly trying to educate myself on what options will be available should she need surgery and this forum has been very informative and has given me some direction - which is what I was lacking from the doctors.

    Any suggestions on books?

    Thanks to everyone for the great advice =)

  2. #17
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Mom to PJ,

    I'm jumping in late due to being super busy with back to school chaos...

    Sorry to hear about your daughter but she is fortunate to have a motivated mom like yourself looking into the best treatments available to her!

    Of course I agree on the option of a consult at Shriners Phila. Although prior to your daughter's Scoli diagnosis you may never have imagined traveling for hours for medical care for her or anyone else in your family, it is very reasonable and common. Juvenile Scoli is uncommon. You want to have your daughter seen by someone who treats it daily, not just once in a while. We traveled from California to Phila for a consult with Dr Betz and are happy that we made the trip.

    That said, we are equally pleased with our specialist in San Diego, Dr Newton (but he does not perform VBS which is why we consulted in Phila...) If it helps to know, our plan is to see Dr Betz annually or until VBS and Dr Newton for the other every 3 to 4 month appts in between.

    Also, BTW, the military health system in SD refers to Dr Newton, so I am told.

    You had asked about books.... for back stretches etc I really like "Curves, Twists and Bends" avail on Amazon.

    I did check out some kid Scoli books from the library when my daughter was first diagnosed but after reading them myself, I didn't let her read them.

    Other Scoli books are written by and for teens really. I read them for insight, but they didn't apply for my child either.

    I went for novels or short books which had female characters with strength in overcoming difficulties, as recommended by teacher friends: Esparanza Rising by Pam Munoz-Ryan is a wonderful novel that I read aloud to my girls.

    The other book that I read with my daughter when she was first diagnosed was about an olympic athlete who was the first negro female to win a gold medal in track, i believe. She was had polio as a child and wore leg braces, and it was a heart wrentching story of the mom believing in her and riding the bus with her for hours to take her to see doctors etc. It was a picture book, but the first that the school librarian recommended to me when I told her about my daughter's diagnosis.

    Hope that helps...
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  3. #18
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Just to update - we are headed to Philly for a Friday appointment We will be seeing Dr. Samdani. Janet and the staff have been as wonderful as everyone said they would be. I am trying to read up as much as possible before we head out on Thursday. We are just praying that her curve has not progressed further since her last ortho visit. I cannot describe how much I am looking forward to speaking with a doctor who can offer insight into treatment options and is willing to have a discussion.

    I am not often on the boards but will try to post about our experiences there as I have found those threads with ongoing stories to be the most helpful. Thanks again to everyone for your direction
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

  4. #19
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Good luck on Friday!! You won't be disappointed -- and I can guarantee you the doctors in Philly are very willing not only to have a discussion with you, the parent, but to actually take into consideration what you have to say! (This was a stark contrast from our former ortho).

    Please keep us posted - I will be thinking of you guys on Friday.
    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/

  5. #20
    Join Date
    Mar 2010
    Posts
    2,755
    I hope all goes well for you and your daughter. Everyone on this forum seems to speak very highly of Dr. Samdani.

  6. #21
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    WOW! You all were right on the money with Shriner's. They are unbelievably AWESOME! They do indeed take into consideration what you have to say! Janet, Dr. Samdani and all who were there were gracious, informative and inclusive. This is what I was looking for from a doctor - someone who wants to offer the information and let our family make the decisions. I got more info from them in those few hours than I have since we started this journey. Our visit was everything I had hoped for and more =)

    Though we are too far along with DD curves for VBS, she is a candidate for tethering. There are several questions we have come up with since leaving that we will address on our next visit. So for now we'll continue with the brace and see how things go for the next few months
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

  7. #22
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Glad you had a productive visit. Shriners probably has the largest knowledge bank for JIS of any organization.

    Quote Originally Posted by mom to PJ View Post
    There are several questions we have come up with since leaving that we will address on our next visit.
    Our surgeon always answered questions that I emailed him. Maybe Samdani will do likewise.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #23
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Quote Originally Posted by mariaf View Post
    Good luck on Friday!! You won't be disappointed -- and I can guarantee you the doctors in Philly are very willing not only to have a discussion with you, the parent, but to actually take into consideration what you have to say! (This was a stark contrast from our former ortho).

    Please keep us posted - I will be thinking of you guys on Friday.
    Thanks Maria! I see that your son had the VBS and is doing well! I am impressed with the information on tethering but am nervous about the newness of the procedure. DD is very nervous about the possibility of surgery so we are gathering info now and we'll sit down with her again before making any decisions.

    Quote Originally Posted by rohrer01 View Post
    I hope all goes well for you and your daughter. Everyone on this forum seems to speak very highly of Dr. Samdani.
    Thank you! I was very impressed with Dr. Samdani and his team. And I very much look forward to working with them in the future =)
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

  9. #24
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Quote Originally Posted by Pooka1 View Post
    Glad you had a productive visit. Shriners probably has the largest knowledge bank for JIS of any organization.



    Our surgeon always answered questions that I emailed him. Maybe Samdani will do likewise.

    Good luck.
    Thank you Sharon! I intend to do just that =)
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

  10. #25
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Tracey,

    I'm glad (but not surprised) that they took such good care of you in Philly!

    A few thoughts -

    Yes, Dr. Samdani definitely answers e-mails from parents (if you don't have his email address, please send me a PM and I'll provide it).

    While tethering is very new, the results with curves that are too large for VBS have, thus far, been very impressive. I wanted to mention that if you haven't checked it out already, the VBS site (www.vertebralstapling.com) might be another good place for you. Althought it was started as a site to basically share information and support to parents seeking info on VBS (since, at the time, there was so little out there), it is for anyone with a child with scoliosis. We have several members whose children either have had tethering or are considerig it, as well as members whose children are being treated with other methods (bracing, etc.). Also, because a large number of VBS surgeries are performed at Shriners in Philly, we also have many parents with personal experience with Dr. Samdani.

    Please feel free to e-mail me if you'd like more info - and again, I'm so glad your visit last week went well.
    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/

  11. #26
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Pooka1 View Post
    Shriners probably has the largest knowledge bank for JIS of any organization.
    I absolutely agree, Sharon.
    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/

  12. #27
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Thank you Maria =) I have visited the VBS site and am glad to see all the info. I will be looking at it more in depth hopefully today.

    We have a list of questions and I think I am going to just email them to him before our next visit which is in only 3 months. We are not going to make the decision before then anyways. My daughter is starting to allow some of the info to sink in and I want to give her time to come up with her own questions for him as well. They were so good about including her in looking at her xrays and explaining what is happening. I want her to be as much a part of this decision as possible. The thought of at least 4 more years in a brace with a curve that continues to progress is not very attractive to her so she is opening up to the idea of surgery a little more.
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

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