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Thread: 10 year old and growing rod surgery

  1. #1
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    10 year old and growing rod surgery

    I am just wondering if anyone can give me insight into the growing rod surgery. This is being discussed for my daughter and I haven't seen alot of discussion on here about that particular surgery - mostly just fusions. I am just wondering about your experiences with the surgery, the outcome, the periodic extensions, etc. just anything. I just want to hear from another person whos been there and not just read textbook cases. I would also be interested in the approximate cost. I have pretty good insurance but have been thinking about possibly contacting Shriners in Louisana. I would like to estimate out of pocket expense. Thanks for any info you can provide.

    Smkleyskl

  2. #2
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    Why growth rods?

    Smkleyskl,

    Is there some reason they're suggesting growth rods (almost guaranteed to cause spontaneous fusion) vs. VEPTR (attached to singular vertebral bodies - and does NOT cause intervertebral fusion)?

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  3. #3
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    Still pretty new to this

    All I knew about scoliosis before September of 2007 is that it caused your spine to curve. I never imagined that I would have personal experience with it. This with my daughter has happened so fast that I haven't learned about all the options yet. There seems to be so many different opinions about treatments and its very confusing. I just want to do the best thing possible for my daughter. She is 10 and a 0 on the risser scale so I guess its because she still has a lot of growing to do. Her curves are 46, 46, and 39. They have progressed rapidly in a year from 23, 23, and 19. She has also had tethered cord release surgery in December of 2007, and now wears a boston brace 23 hours a day but not helping. Perfectly healthy active child before all of this occured. I think she has to much of a curve for the stapling and I don't know the difference between the veptr and growth rod. We go back for the official "surgery talk" in 3 weeks. I am learning so many new things about all of this but still know so little. Any advice or suggestions is helpful to my research. Thanks. I am going to research veptr now.

    smileyskl

    Also, any questions I could ask the doctor from anyones experience with this that I may not think of.
    Last edited by smileyskl; 08-18-2008 at 08:34 AM.

  4. #4
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    Smileyskl,

    Pam made a good point about spontaneous fusion - that would be my main concern with a growing rod as well.

    Dr. Betz, for example, uses a hybrid growth rod which is similar to VEPTR in how and where it is attached to the spine. The hybrid rod was specifically designed, from what I understand, to lessen the chance of spontaneous fusion occurring. It almost always occurs with traditional growing rods.

    If it were my child, I would get several opinions. I have no personal experience with the Shriners in Shreveport except that, for example, I know one patient who was referred from there to the Shriners in Philly because the one in Louisiana didn't perform VBS (that's not to say they aren't good).

    If you can make the trip, though, I can vouch for the staff in Philly - they're great. Otherwise, I'm sure you can get some other recommendations here that are closer to home for you.

    In any event, I would explore all my options (VEPTR, etc.) and then make a decision to go with whichever surgery and whichever surgeon I felt most comfortable with.

    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/

  5. #5
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    Thanks. I had not thought about spontaneous fusion. What is done if that occurs. I am definately bringing all of this up at our appointment.

  6. #6
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    I'm not sure there is much they CAN do once spontaneous fusion occurs - the goal should be to prevent it from happening in the first place.

    Please keep us posted and feel free to ask any other questions you may think of - again, best of 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/

  7. #7
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    My daughter has the growth rods and everything has gone fine. I think the reason some are discussing spontaneous fusion is because originally the rods were attached to the top and base of the spine. Now doctors are attaching the top rods to the rib cage, this allows for more growth and I assume not the spontaneous fusion (although my doctor never mentioned that as an issue when we started). I would ask the doctor how he intends to attach them.

    Normally a fusion is the end result, but for some they are stapling towards the end of growth, then taking out the rods after six months. Of course if for any reason the staples don't hold, then a fusion is preformed.
    I know a lot of people here support stapling, as they tend to all go to Philly Shriners. There are pros and cons to both.

    The reason I like the rods is that the spine is allowed to mature before anything is permently attached to it. At the time my daughter was 9 when we actually started with the rods, and to me that seemed like the right step for us. I wanted the spine to grow as much as possible with the least hardware attached.

    Yes, there are more surgeries with the rods, but it's normally an in and out proceedure, and they're back to school within two weeks. The major concern we were told about was infection, knock on wood, we've never had that issue.

    If you have anymore questions on rods feel free to ask. Emily

  8. #8
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    Yes, there seems to be many, many opinions and different experiences. I am taking notes for the doctor so THANKS ALL OF YOU FOR YOUR HELP. I am also glad to hear from someone who is dealing with the growing rod thing now. I am wondering how the extension visits go?? Is this a major ordeal and how often has your daughter had to go for them. Thanks for the replies.

    Smileyskl

  9. #9
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    Quote Originally Posted by ecnw View Post
    Normally a fusion is the end result, but for some they are stapling towards the end of growth, then taking out the rods after six months. Of course if for any reason the staples don't hold, then a fusion is preformed. I know a lot of people here support stapling, as they tend to all go to Philly Shriners. There are pros and cons to both.
    Hi Emily,

    I just wanted to clarify a few things about the growth rod/staple combination they are using in Philly. From what I was told, the rod and the staples are normally inserted simultaneously. Then, at the end of growth, the staples will remain in place and the rod will be removed. (By the way, I had also been told that the hybrid rod being used by Dr. Betz is similar to the VEPTR in how and where it is attached so there is less chance of spontaneous fusion). I'm happy to see you mention that more doctors are now attaching the rod to the ribcage rather than the spine - hopefully spontaneous fusion will soon be a thing of the past

    The reason they use the hybrid rod AND the staples in some children (usually those whose curves are too large for stapling alone) is twofold: to achieve more correction initially AND to have something in place (the staples) once the rod is removed in order to maintain that correction and hopefully avoid fusion which would usually be done at the end of treatment with growth rods alone. Of course, as with all things related to scoliosis there are no ironclad guarantees. But the parents I have spoken to who chose this option, did so not necessarily because their children were being treated in Philly (although of course that's how they learned of it) but rather because they felt it was their child's best chance to avoid fusion later on - and they also felt that the surgery (staples and growth rod) was not much different, in terms of recovery time, etc. than the growth rod surgery alone - in fact they are pretty similar.

    I hope this information is helpful.

    All that being said, I am THRILLED to hear that your daughter has done so well with the growing rod (no infections - YAY!!). It's great to hear success stories related to ANY treatment method - it gives hope to so many and I thank you for sharing some of your daughter's story with us!

    My wishes for her continued success!
    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/

  10. #10
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    Hi,

    I'm just curious, at what point are growing rods usually recommended?
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  11. #11
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    Quote Originally Posted by smileyskl View Post
    I am just wondering if anyone can give me insight into the growing rod surgery. This is being discussed for my daughter and I haven't seen alot of discussion on here about that particular surgery - mostly just fusions. I am just wondering about your experiences with the surgery, the outcome, the periodic extensions, etc. just anything. I just want to hear from another person whos been there and not just read textbook cases. I would also be interested in the approximate cost. I have pretty good insurance but have been thinking about possibly contacting Shriners in Louisana. I would like to estimate out of pocket expense. Thanks for any info you can provide.

    Smkleyskl

    why are they considering that for??? her curves aren't that bad, are they???
    Last edited by sparklegirl59; 08-19-2008 at 02:24 PM.
    Valerie

    Age: 18
    Hi, my name is Valerie, but you can call me Val or V.
    I wore a Boston Brace from 2007-2010
    My curves were 30 and 31
    I now have only a single curve which stands at 35 degrees.
    I owe all of my blessings to The Lord!
    I am very thankful with where my spine is at right now.
    I want to meet some new people on this forum!
    Don't be shy...
    Feel free to message me if you would like to chat!

  12. #12
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    Quote Originally Posted by leahdragonfly View Post
    Hi,

    I'm just curious, at what point are growing rods usually recommended?
    Hi Gayle,

    That's a good question. I don't think there is a clear-cut answer as to exactly when is the best time to add a growth rod. It depends on many things - but I've been told by a few orthos that they recommend growing rods when nothing else (bracing, etc.) seems to be able to control the curve and it has begun to go "out of control" (45, 50+ degrees, etc.).

    Some say they prefer to wait until the child is 9, 10, 11 years of age, if possible, before adding a growing rod. This is so that there will not have to be so many expansion surgeries which, while relatively minor, carry risks as all surgeries do.

    Of course, sometimes it is not possible to wait until a child reaches a certain age to add a growing rod. If the curve is getting too large, then the benefits of adding the rod sooner may outweigh the advantages of waiting a few years.

    Hope this helps.
    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/

  13. #13
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    Gayle and Val,

    I believe the reason that they are suggesting the rods for my daughter is because of her age and the fact that as Maria said, nothing is helping the progression. She has worn her brace faithfully exactly the way she should and her curves just continue to get worse (about 1 - 2 degrees per month) and she developed another curve at the bottom. She also has had a tethered cord release surgery and I don't know if this helped, hurt, or did nothing to affect that. I do know that the cord could retether and that would complicate things as well. I am just as confused about this as anyone. I wish that I could understand but I just have to trust God that this is all going to work out.

  14. #14
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    Hi smileyskl,

    You've already gotten very good comments from others. I'd be happy to share my son's experience with adjustable rods. He has had VEPTR rods (two) since Aug. 2001. He was 6yrs old when he had his VEPTR surgery.

    I think the best thing for you to do is to write down your questions, in priority order. Ask questions that are specific to your daughter. If they are recommending a procedure (ie, growing rods) ask why, and how will it benefit her, and what other options are there, and what the predicted outcome should be. Maybe one of the more important questions to ask is "if this were your child, what would you recommend?".

    Braydon has had two tethered cord release surgeries. His neurosurgeon strongly believes there is a direct connection between tethered cords and curves in the spine. If the tethered cord is corrected before permanent damage to the nerves/tissues is done, most curves will stop progressing or even improve. In other cases, nothing can stop the progression of a curve, except surgical intervention (this was the case with Braydon). I hope she has seen good benefits from the tethered cord release surgery.

    Braydon has had 13 VEPTR expansion surgeries. The surgeon re-opens the same incision every time. His incisions look very good considering the multiple surgeries. He's a good healer. Braydon has never had any major complications with his VEPTR devices. The expansion surgeries are often done as outpatient procedures, but Braydon chooses to stay overnight to make sure there isn't a problem, and to make sure his pain is well managed. The most discomfort comes from the incisions.

    If I were in your shoes, I would get at least one other opinion, preferably from a pediatric orthopedic surgeon who has had many patients similar to your daughter. We had to travel out of state in the beginning of Braydon's VEPTR journey. Now, his local ped. ortho. is a VEPTR training surgeon. It may be difficult, but it is do-able. You MUST get the best care possible for her. Whatever that may be.

    Before anyone does surgery on her, I would make sure they did a baseline pulmonary function test. Does she seem to have shortness of breath at all? One thing that VEPTR provides (where traditional growing rods do not) is improved lung space/capacity/function. If there is a question that her lungs are being impacted by the curves, please consider finding a VEPTR surgeon for an evaluation. Not all children qualify for VEPTR surgery, but you will get more answers than you have now.

    I'd be happy to share more about our experiences, if you'd like. Feel free to email me at boulderfam@hotmail.com
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  15. #15
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    Thank you Carmell for your reply. I checked out your webpage and you have a beautiful family. It looks like Braydon has always been a trooper. How did you know that Braydens cord had retethered? We found Katelyns by an routine MRI when her scoliosis was discovered. She had none of the symptoms that go along with tethered cord. I guess thats why they want her to have a MRI at least once a year (to check for that). The neurosurgeon who did her tether release surgery did say it may stop the progression but when we had it checked four months later her curve had almost doubled and she developed a third curve. I know we have a long road ahead and I wil definately be asking the doctors alot of questions. I have noticed that no one else on this forum seems to have the tethered cord/scoliosis relation. There is no scoliosis in our family that we know of except Katelyn. I wonder, does the tethered cord make her's neurological or is it idiopathic like the doctor said? This stuff is very confusing. Sometimes it feels like we are experiments. Anyway, thanks for your help. I really appreciate your taking the time to respond. Thanks!

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