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  1. #1
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385

    Two-year check-up

    Hi All,

    I've been in somewhat of a panicked state of mind for the last few days so I thought I'd write to you all and see what thoughts or ideas you might have for me. Last Thursday, we had Alexander's 2 year post-op appt. with Dr. Wagner at Children's Hosp. in Seattle. He said the fusion looked good. But when my husband and I expressed our ongoing concern about his posture, Wagner studied the x-ray more and said there were structural reasons for the posture.

    While stating he still felt he fused to the right levels (T8-L3), he mentioned to us and to his two students that the curve was causing the posture to tilt and that at some point "we could fuse him all the way down and anchor it to the pelvis". He said he wouldn't recommend this now but seemed to say that it might be recommended in the future.

    On Monday we're going to see an orthotist for a small shoe lift to see if that can help. But I'm really trying not to panic although I'm feeling like I can hardly cope with the possibility of another huge surgery at some point in the near future for this kid.

    The thought of him needing another huge, body-restricting surgery in the not-too-distant future is really feeling overwhelming to me and I've been teary, with an upset stomach much of the time whenever Alexander or my other son aren't around. Everyone else in my life are really clueless about all of this.

    Any of your thoughts or opinions would be greatly appreciated. Thank you so much in advance.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,905
    Dear Laurie,

    Wow that is so much to digest.

    Would it be helpful to you and your thinking if you got another opinion at this point in time? I'm not saying to switch surgeons but it seems like another opinion would help you approach the idea of another possible surgery.

    It is amazing to me that a "point" defect at a particular vertebra can cause curvature elsewhere in the spine, especially after fusion. I am obviously missing some key facts but I really don't understand that or the situation with Chiari causing curvature AFTER the syrinx is removed.

    Please keep your chin up.

    Best regards,
    sharon
    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
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Thanks for such a quick response, Sharon. I will definitely get another opinion if this shoe lift doesn't seem to help. I can't imagine why he'd suggest a fusion to the pelvis rather than just an extension to L4. Not that I want any more surgery but it seems so extreme in a young boy to fuse to the pelvis.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  4. #4
    Join Date
    May 2009
    Posts
    3,745
    Hi laurie
    i would definitely recommend a 2nd or even 3rd opinion...also, all surgeons i have consulted want to "fix" me to pelvis for "stability," they say rods & stuff wont stay stable without anchoring...could that be why the surgeon said that?...i hope other opinions can put your mind at rest as to the necessity of such surgery for your child...

    best of luck
    jess

  5. #5
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Thanks Jess,

    I will definitely get more opinions at least when/if the surgery is deemed "necessary" by the surgeon. Right now it seems we are still in a holding pattern but just the idea of it as a possibility is very upsetting to me. I did write to the Dr's RN so maybe I can talk to the Dr. next week and get some better clarity about this situation.

    I may take my son somewhere else for another opinion sooner also based on that conversation.

    Thanks again for your response.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Laurie,

    I am so sorry to hear your news, and I can only imagine how upset and worried you must feel. Especially a the 2 yr post-op point, when you were probably hoping to be able to forget all about surgery.

    It would definitely seem helpful to clarify the doctor's comments and learn more about his reasoning. I know I would want to delay that type of revision surgery for my child as long as possible unless I knew a really clear reason for it. Seems like one or two other opinions would be benificial. I'm sure you have other pediatric SRS surgeons in your area, and there is also Shriners in Portland.

    I have no real advice for you, but I just wanted to lend my support. I hope things will seem better after talking with the doc. I always find more info to be helpful in reducing worry. Please let us know how you are doing.

    Take care,
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

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