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Thread: Newbie Dad; 11-year old daughter expecting surgery

  1. #1
    Join Date
    Oct 2011
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    Newbie Dad; 11-year old daughter expecting surgery

    Hello All,

    Our 11-year old daughter, Sachi, was diagnosed with Scoliosis by the Pediatrician over 2 years back. Since we are in a suburb close to Dallas, TX, we were referred to the TSRHC (Texas Scottish Rite Hospital for Children). Dr. Tony Herring and his staff have been following her progress. At that time itself, her lumbar curve was at almost 50 degrees. We were told that she would need to undergo surgery at some stage, but a brace would be used to hold her curves down as much as possible. She went through a couple of braces, one of them being the Boston brace, and the other a TSRHC brace.

    Late last month, it was found that her curves have had an appreciable jump. Per the X-rays taken, the lower lumbar curve is at 77 degrees, and the upper thoracic curve is at 52 degrees. We were told that surgery needed to be performed within the next few months to avoid any complications. Since Dr. Herring does not perform surgeries anymore, we had our first meeting with Dr. Lori Karol. She recommended both Posterior incision (for the 2 curves) and Anterior incision to avoid crankshafting (Sachi just turned 11). The doctor mentioned that both the curves will be in the 30s after the surgery, and she will fuse T5 to L4. Surgery has been tentatively scheduled to be in mid-November.

    We have been taken aback by the sudden turn of events, and the need to perform surgery in the immediate future, instead of say when Sachi is 15, and her growth reasonably more complete.

    We had a few questions and it would be great if some of the experienced forum members could reply with what they know on any of the below questions.

    1. Has anyone else been to TSRHC for Scoliosis surgery? What is your feedback? In the 2011 rankings of Hospitals in the US News and World Report, Children's Medical Center has been clubbed together with TSRHC. The combination is rated highly at #3 for Orthopedics. We were just wondering how much of the ranking is attributable to TSRHC.
    2. Is the sole purpose of the Anterior surgery to avoid crankshafting? Or does it also help in correcting the Lumbar curve? (I know we have to ask this question to the surgeon next time we get to meet her).
    3. We were told that “allograft” will be used instead of Sachi’s own bone graft. How does “allograft” compare to BMP? (We have asked the nurse this question and she will get back to us).
    4. On this forum, I have read many cases where the curves have been reduced to be in the teens (atleast lesser than being in the 30s) even though they started at about where my daughter currently is. Do you think the doctor is stating 30s just to not raise hopes, and surprise us with a bigger correction post-surgery? Just wondering.
    5. Also, if her curves will be in the 30s, will she still get pain when she becomes older and is in her 30s/40s/50s?
    6. What kind of flexibility loss is there with a fusion that spans T5 to L4? Will Sachi be able to bend and participate in Tae Kwon Do?
    7. I have heard about “Minimal Invasive” surgery in Scoliosis. Is it worth pursuing this option, considering that Sachi has such high degree curves?
    8. TSRHC is very highly regarded. Do I need to get a second opinion? If not for anything, just to confirm that T5 – L4 is correct. Are there any recommendations in the Dallas area?


    Jai
    Last edited by Jai001; 10-06-2011 at 07:12 PM. Reason: surgery date corrected to be mid-November, not mid-October

  2. #2
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    Jan 2008
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    Jai, welcome. I'm sorry about your daughter's diagnosis.

    Those are some excellent questions. I agree most should be posed to your surgeon as you mentioned. I think a few folks here might know the answer to some of them in including our moderator, Linda. I'll take a stab at a few...

    Quote Originally Posted by Jai001 View Post
    [*]We were told that “allograft” will be used instead of Sachi’s own bone graft. How does “allograft” compare to BMP? (We have asked the nurse this question and she will get back to us).
    I don't think BMP is used on children. Linda may know.

    [*]On this forum, I have read many cases where the curves have been reduced to be in the teens (at least lesser than being in the 30s) even though they started at about where my daughter currently is. Do you think the doctor is stating 30s just to not raise hopes, and surprise us with a bigger correction post-surgery? Just wondering.
    You could be right. In the case of one of my kids, the surgeon kept our expectations to a moderate level with respect to the amount of rotation he could correct. Upon the first time she stood up, and then again on the first sagittal radiograph, it was very clear that he far exceeded my expectation at least.

    As far as I know, the curve correction amount is a function of many factors that are known to the surgeon and known perhaps only at the time of the surgery. That said, I think the bending radiographs can be indicative of the amount of flexibility which controls, in part, the amount of correction. Did the surgeon mention if her spine was relatively stiff or flexible? The last thing is some curves are best left not hypercorrected as far as I can tell. Both my kids had thoracic curves but different types of thoracic curves. One was hypercorrected and the other was not using my lay definition of hypercorrected! They both went in at 57*-58* and one (Lenke Type 1) came out <10* T and ~0* L and the other (false double) is about 20* - 25* on both T and L if I recall correctly. Same surgeon, both T curves, different correction.

    [*]Also, if her curves will be in the 30s, will she still get pain when she becomes older and is in her 30s/40s/50s?
    Okay I have seen one paper on this and they found NO difference in pain levels in the out years between folks who were hypercorrected versus corrected. Ask your surgeon about this... I bet he knows the paper.

    Good luck to you and your daughter.
    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."

  3. #3
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    Hi Jai and welcome. I have been on this forum for almost one year now and although not personally knowledgeable about the hospital you are referring to in Texas, I have read a lot of positive comments about it. I am sure those who have actually dealt firsthand with them will chime in. My son's curve was thoracic and although very severe, he did get a pretty good correction. He also had significant rotation as well so that also plays a factor. My son is fused from T4 to L2 and is coming up six months post-op and he is doing really well. Kids are so resilient.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  4. #4
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    Hi...

    BMP is used on children, but I think most surgeons wouldn't use it. It would be like using a lawn blower to blow out a birthday candle.

    The surgeon should be able to give you statistics in reference to most of your questions. I would definitely address all your questions with her.

    The only thing that really concerns me is the anterior fusion. I'd want to know how many levels need to be fused anteriorally, and what type of approach she wants to use. If she's planning a big open thoracotomy, I would definitely go find a second opinion. I actually know very little about treatment in kids, as I just don't keep up with the research the way I do for treatment in adults. I can tell you that at the September meeting of the Scoliosis Research Society, one of the presenters said something like "now that we worry less about crankshafting". I can't remember which presentation it was, or even the topic of the presentation. All I remember is, that at the time, I wondered why that was.

    I have very strong opinions about minimally invasive surgery. If it were my child, and I had a very experienced minimally invasive surgeon close by, I would consider it. Otherwise, I would totally dismiss it. And, when I talk about very experienced, I'm talking about someone who has done hundreds of MI surgeons. There are two things that scare me. First, we don't have any long-term data yet. And, second, there's a very steep learning curve with MI surgery.

    I would not be at all concerned about how much correction one can get. If your surgeon is very experienced, they will get enough correction so that it will never be an issue for your daughter. There is such a thing as over-correcting a curve. The amount of correction should depend almost entirely on how much the spinal cord can be stretched in some places and have the slack taken up in others. If a surgeon gets it wrong, the patient can be neurologically compromised.

    Lastly, in terms of flexibility, your daughter will definitely lose some. That's the price one has to pay. Whenever possible, experienced surgeons fuse less lumbar segments. But, in some cases, there's no way of avoiding the lumbar segments. And, even when lumbar segments are preserved, they often have to be fused later in life. I don't know if Sachi will be able to participate in Tae Kwon Do, but I'd put my money on yes. She'll figure out ways of doing things a little differently as she gets used to her new body.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  5. #5
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    Quote Originally Posted by LindaRacine View Post
    I can tell you that at the September meeting of the Scoliosis Research Society, one of the presenters said something like "now that we worry less about crankshafting". I can't remember which presentation it was, or even the topic of the presentation. All I remember is, that at the time, I wondered why that was.
    I can tell you what our surgeon said when I asked him about this. He said the pedicle screws hold so well that crankshafting is not an issue with them. If you'll recall, we have a child on the group who did experience crankshafting. She had no screws and all hooks because her pedicles were too small. So maybe hooks alone can't avoid it.

    In Sachi's case, maybe they want to do the anterior because they think the pedicles are too small to hold enough screws to avoid crankshafting. That and all such questions are for the surgeon to answer.
    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."

  6. #6
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    Quote Originally Posted by LindaRacine View Post
    I would not be at all concerned about how much correction one can get. If your surgeon is very experienced, they will get enough correction so that it will never be an issue for your daughter. There is such a thing as over-correcting a curve. The amount of correction should depend almost entirely on how much the spinal cord can be stretched in some places and have the slack taken up in others. If a surgeon gets it wrong, the patient can be neurologically compromised.
    Yes I have gotten the feeling from some reading that hypercorrection has no advantage over correction. And as Linda mentioned, there is some increased risk with more correction versus less.

    You probably won't even be able to see a difference from the outside in terms of lateral curve. That said, I do think there is an obvious difference between hypercorrection and correction when it comes to severe rotation because it can be related to the size of the rib hump.
    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."

  7. #7
    Join Date
    Oct 2011
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    2
    Pooka1, Elisa, Linda,

    Thank you for the information! I have gained a lot from your replies and reading other's experiences on this forum.

    Thanks
    Jai

  8. #8
    Join Date
    Jun 2011
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    Southern CA
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    Good luck to you and your daughter
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  9. #9
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    1.Has anyone else been to TSRHC for Scoliosis surgery? What is your feedback? I haven't been to TSRHC. I heard good things abot them
    2.Is the sole purpose of the Anterior surgery to avoid crankshafting? Or does it also help in correcting the Lumbar curve? Well The Anterior surgery does help incorreting the curve
    3.We were told that “allograft” will be used instead of Sachi’s own bone graft. How does “allograft” compare to BMP? well AlloGraft means it comes from someone who died. BMP i don't think has anything to do with allograft

    4.On this forum, I have read many cases where the curves have been reduced to be in the teens (atleast lesser than being in the 30s) even though they started at about where my daughter currently is. Do you think the doctor is stating 30s just to not raise hopes, and surprise us with a bigger correction post-surgery? After my surgery my curves when down to 20 and 17 degrees
    5.Also, if her curves will be in the 30s, will she still get pain when she becomes older and is in her 30s/40s/50s? well my surgeon told me that scoliosis is painful at any age
    6.What kind of flexibility loss is there with a fusion that spans T5 to L4? Will Sachi be able to bend and participate in Tae Kwon Do? your talking a 12 level spinal fusion She will probley beable to bend at the waist. You have to ask her doctor about tae kwon do
    7.I have heard about “Minimal Invasive” surgery in Scoliosis. Is it worth pursuing this option, considering that Sachi has such high degree curves? I have heard that when curves are only like in the low 40s
    8.TSRHC is very highly regarded. Do I need to get a second opinion? If i was her mom i whould probley get an 2nd opinion. If not for anything, just to confirm that T5 – L4 is correct. Are there any recommendations in the Dallas area? well i don't no how far houston is for you but i whould reccomend getting in to shriners orthopedic hospital for children houston
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

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