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Thread: Brand New and Overwhelmed

  1. #1
    Join Date
    May 2007
    Posts
    4

    Brand New and Overwhelmed

    Hi everyone. This forum has been a complete lifeline. My 8 year old daughter was just diagnosed with a 18 / 12 degree S curve. Everything I initially found on the internet was pretty dire and scary. I feel empowered and relieved to hear about the successes of stapling and of the SpineCor brace with Juvenile onset cases.

    We meet with our first of two local pediatric orthopods on June 14th. Because I am a planner, my list of questions is long and detailed. My question for you all, who've chosen either of the two above mentioned treatments is this: Were your primary orthopods supportive of these treatments, or did you meet with resistance?? I know well that we have to be tireless advocates for our children, and I am trying to prepare (and prepare my husband, who thinks a bit more inside the box than I do) for the prospect of coming up against resistance to anything different from the wait/Boston brace/surgery way of thinking. I know each doctor is different, but I'm just wondering if, in general, these two new techniques are discounted by most docs.

    Thank you all so much for all the encouraging and informative things you've shared on this forum.

    Jennifer

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Jennifer,

    Welcome!

    Your post hit home with me. Our former ortho did not support our decision to get the stapling. She thought very much inside the box. It's not that she could find anything negative to say about it (like it's not safe, it doesn't work) - none of that, just felt it was "too new" at the time.

    Keep in mind it was nearly four years ago and many doctors have come on board since then and have actually suggested the stapling to some parents (I can tell you she was not one of them - LOL!). She also did not have kids and could not IMHO understand how distressing it was as a parent to think of keeping my child in a brace for several years.

    Please feel free to e-mail me. I have just recently put together a "support list" of parents so that those considering the stapling can talk to others in the same boat as well as to those of us whose kids have already had it.

    In addition, if you do decide to look into it (you have nothing to lose by going in for a consult), call Shriners in Philadelphia at 1-800-281-4050 and ask for Janet Cerrone. She is the one to speak to regarding the stapling. She is the physician's assistant who works with Dr. Betz and the spine team and she is VERY knowledgeable and helpful.

    Best of luck to you!
    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
    Mar 2004
    Posts
    1,140
    Hi Jennifer,


    If it's determined that your daughter has progressive juvenile scoliosis, you will encounter a lot of resistance from orthopaedic doctors to do anything until the curve reaches 25 degrees. When one considers that 75% of juvenile curves in the 20 - 29 degree range at the time of peak height velocity period during adolescence will progress to surgery levels, it's painfully obvious to any rational thinking person that waiting to brace an 8 year old's curve when it reaches 25 degrees is already too late. There is a very narrow bracing range which is considered acceptable to the vast majority of orthopaedic doctors and that is from 25 - 40 degrees. Once curves progress beyond 40 degrees, braces are rendered ineffective because the deforming forces are just too great to be contained in a brace - this is especially true during the adolescent growth spurt. Even though you may want to be proactive, you will encounter A LOT of resistance from doctors who just can't think outside the box.


    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  4. #4
    Join Date
    May 2007
    Posts
    4

    stapling vs bracing

    From what I gather from the discussion, the Spinecor brace is great if you start with a small curve, after which the stapling is a good option?? Is that right? I've tried to trace back the brace parents and the stapling parents, and I can't always get an idea of the curve degree when either option was chosen. My daughter's curve is relatively small, but with her age, sex, and S curve, my take is that she's at high risk for progression.

    Maria and Celia, thanks so much for your feedback. I will be better prepared (and so will my husband) for any negativity to either of these treatments. I can't help thinking that we were so fortunate to catch it so early, and if that added time gives us the ability to actually improve the curve, then I feel that she and we can truely handle this, which I wasn't sure of in the beginning. It's so horrible to go from a place of thanking God daily for the health of your children to suddenly, desperately needing a support system as you navigate a disease you know almost nothing about.

    It's just so helpful to have found this group of knowledgable, supportive parents!! Thank you all so much for changing the way I looked at this diagnosis.

  5. #5
    Join Date
    Jan 2007
    Posts
    3

    New Scoliosis and Bracing 2 months

    My daughter is 11, almost 12 and has two 20 degree curves. She is wearing a c harleston brace at night and doing rotation torso exercises that a Dr. Mooney has used successfully to hold curves. On Saturday, my daughter came to me and showed me an egg size hard lump on her back ribs. I don't know if this is scoliosis or something else. We have an appointment on Friday with Orthopedist to check this out. Has anyone heard of scoliosis causing a golf ball shaped lump -- not at all the look of rib humps that I've seen pictures of on the internet.

  6. #6
    Join Date
    Sep 2006
    Posts
    84
    Quote Originally Posted by sgwhittington
    My daughter is 11, almost 12 and has two 20 degree curves. She is wearing a c harleston brace at night and doing rotation torso exercises that a Dr. Mooney has used successfully to hold curves. On Saturday, my daughter came to me and showed me an egg size hard lump on her back ribs. I don't know if this is scoliosis or something else. We have an appointment on Friday with Orthopedist to check this out. Has anyone heard of scoliosis causing a golf ball shaped lump -- not at all the look of rib humps that I've seen pictures of on the internet.

    Please , email to Gez @ophub.com for a great new brace the Rigo-Chaneau brace being very succesful in Europe , and in combination with the Schroth 3 Dimensional method to treat scoliosis . He is in Reseda , CA (818 )996-1611
    Betall

  7. #7
    Join Date
    May 2007
    Posts
    4

    Contacting Rivard

    For those of you who've gotten the Spinecor brace fitted in Montreal, could you help me with contact information??

    I called the number I found after Googling Rivard and Colliard, but got an english message the first time and left a messge that is still unreturned, and called the main Hospital number and got transfered to the same mailbox, and then today called the same number and got a french message that I couldn't understand (left a messge anyway??!!!). Did others have difficulty with a return call? Do you have contact nunbers to share? Any help is appreciated.

  8. #8
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Jennifer,

    I've been trying to reach drs Rivard and Coillard for the last few days regarding a faulty snap and the French message says they'll be out of the country until July 6. If you phone the office this afternoon, SueAnn is there and she's very helpful!

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  9. #9
    Join Date
    Mar 2004
    Posts
    1,140
    Quote Originally Posted by sgwhittington
    My daughter is 11, almost 12 and has two 20 degree curves. She is wearing a c harleston brace at night and doing rotation torso exercises that a Dr. Mooney has used successfully to hold curves. On Saturday, my daughter came to me and showed me an egg size hard lump on her back ribs. I don't know if this is scoliosis or something else. We have an appointment on Friday with Orthopedist to check this out. Has anyone heard of scoliosis causing a golf ball shaped lump -- not at all the look of rib humps that I've seen pictures of on the internet.

    Hopefully the egg size hard lump is nothing more than protruding ribs. There was a recent study that shows night time bending braces are effective in halting curve progression. You're doing great!

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  10. #10
    Join Date
    Mar 2005
    Posts
    8
    Hi Jennifer,
    I see that Maria has already responded to your e-mail, we are one of the people on the list of possible stapling. We actually just recieved an appointment to go back to Shriners on june 29 to discuss stapling.
    We are pretty sure at this point that we are going to do it. Brian is 11 and started with an 18 degree curve he has progressed to 28 degrees. He is in a brace part time, but he absolutely hates it. Which is why we are going back to shriners. We went before but because the curve was holding at 23 degrees wearing it part time Dr. D felt that maybe we could aviod surgery.
    He hates the brace so much that we were trying to find another alternative.
    Stapling is effective 87 percent of the time. If you want to e-mail me feel free to at lau314 @optonline.net
    Laura

  11. #11
    Join Date
    Aug 2006
    Posts
    369
    Celia
    You probably already know this but we also had a snap problem and a shoe repair place fixed it for us. Replaced the whole snap.
    Christine
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  12. #12
    Join Date
    Mar 2004
    Posts
    1,140
    Well.....let me tell you Christine I have *such* a headache! The problem is with the snap on the pelvic base and not the strap. What I've had to resort to is using the snap next to the faulty one so it's throwing Deirdre's balance completely off and she looks off centre - this has been going on for a few days. SueAnne is sending me 5 snaps by Fed Ex and I should get the parcel by tomorrow. The local shoe repairman doesn't have snaps that fit with the pelvic base.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  13. #13
    Join Date
    Mar 2007
    Posts
    77

    tough decisions to make

    My daughter was first diagnosed with an 18 degree thoracic curve at about the age of 7. Our doctor was of the wait and see, then brace then surgery. So we waited, and watched it progress. At 25 degrees, she was given a type of boston brace (just before 9th birthday) to wear 23 hours a day. Big struggle, daily, and she ended up wearing regularly only at night. However, curve stayed under 32, but then second lower thoracic curve (into lumbar) started showing up. She wore this brace for about a year and a half, at about this time we moved out of area, and began seeing a new doctor who prescribed nighttime only providence brace (May of 2006). It took about 3 months from time of first fitting of brace till the time we had it at home, which, looking back is ridiculous that I was so patient with the brace fitter. Her curves jumped up about 10 degrees in that 3 month period.
    In Feb of this year, curves were 53T and 47L, in June 61T and 53L, she's scheduled for surgery Aug 22. Looking back, I wish I had been more aggressive in pursuing different options. You worry about doing something "out of the box" because it has risks...and praying that the brace alone will work. Neither doctor gave us precise exercises, just said to keep her active (which we have done). She is pretty balanced (with the S curve), and until last 6 months or so, her scoliosis wasn't really that apparent to anyone who didn't know what to look for. I am having many second thoughts now, wishing we had done things differently, you know, would anything had made a difference.
    From what I read on these boards, stapling seems like a good alternative to having to struggle with the brace and all of the issues involved with that. Both of her doctors, though, did not feel very confidant of the results with the stapling techniques that are being seen. Another study I read was concerning a clinical trial somewhere that is working on exercising specific back muscles (with the belief that scoliosis is caused by a weakening of muscles on one side of the spine).
    Sorry for the lengthy post, but I can tell you that if I could do it all over again, I would be more aggressive in looking for alternatives. At the time, though, it is understandable because you don't know whose curves will progress...

  14. #14
    Join Date
    Apr 2007
    Posts
    5

    Go with what your heart tells you

    Hi Katie's Mom - Jennifer,

    My daughter Brianna was diagnosed just before she was 5 years old with an "S" curve. She is now 6 and is having spinal stapling on October 3rd. We "waited and watched" for a mere year before she hit that dreaded 25 degrees. She went into a Boston brace full time this past June.

    I was so disappointed in our ortho's lack of compassion and options that once the shock of being told she was getting the brace wore off, I immediately began searching the web and found this forum and more importantly, David's mom Maria and Lorena's mom Amanda. With much research and info on their children's successful surgeries I came to the realization that stapling is the best long term option for my daughter. So we hit the ground running and have never looked back.I did not even consult our ortho because his view of how to handle this was already readily apparent - put her in a brace for the next 10 years and hope it works. And that answer was not one I was willing to accept at face value. I have no doubt that I have done the right thing.... because it's what feels right. Both logically through research and in a mother's heart. Do your research, find contacts, ask all those questions. Then go with what your heart tells you.

    I'll send out an update once we get back from Philadelphia in mid-October.

    God bless your daughter and your family as you search for you own set of answers.

    Jasmine
    Jazzeve
    ****************
    Mom to Brianna, age 5 1/2
    Diagnosed age 4 1/2
    26T/20L

  15. #15
    Join Date
    May 2005
    Posts
    672

    sgwhittington

    Hi, I see you haven't been on in a while but hoping you will see this and respond. Just wondering if you ever found what the lump in your daughter back was & what was cause? Also wanting to know your opinion/experience of how the torso rotation exercises are working for your daughter...I contacted Dr. Mooney about torso rotation and he said he hasn't treated a child as young as my 9 y.o. with this treatment (he did forward me an article on the latest findings). When I mentioned our ped. ortho, he said that (the ped. ortho) does not recommend this procedure for treating scoliosis.

    Renee

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