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Thread: Update from Concerned Dad

  1. #1
    Join Date
    Dec 2008
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    494

    Update from Concerned Dad

    Been away for a long time and looks like the site layout has changed - not really sure where to post this, I figure I’ll post it here.

    I used to be very active on this board when my daughter was diagnosed w/ scoliosis in Nov 2008. Four years ago we were in Montreal getting fitted for the Spinecor (which we rather quickly abandoned because the physician reported in-brace correction seemed to be a gross exaggeration – but that’s a whole other story). Back then I remember that I would often wish some of the folks who pre-dated my time here, whose stories and journeys I read w/great interest, would come back and let us know how things turned out. So, I figured I would pop in and say hi to some old friends and provide an update.

    After abandoning the Spinecor we adopted the “watchful waiting” approach, visiting the doctor every 6 months for xrays. At diagnosis she was almost completely skeletally mature (as assessed by hand radiographs) and her doctor felt “observation” was a very reasonable course of action. At the 2 year post-diagnosis appointment (when she likely would have been taken out of the brace had we pursued that route) her curve was the same as it was 2 years prior, 38 degrees. We felt pretty good about things, even smug perhaps, figuring we spared her the burden of bracing and achieved the same intended outcome (a stable curve). My dear daughter went on with her life growing into quite the remarkable young lady).

    Just when we thought this whole scoliosis saga was behind us, we went to our summer appointment/check-up. We were shocked to discover she progressed to 55 degrees. I’m thinking: that’s not supposed to happen, she’s a fully grown adult. A modest progression I could see, but that was a dramatic jump. Long story short, we decided to wait another 6 months and re-assess the situation (and he ordered an MRI to exclude other things as a cause of the late progression). Anyway, she is in surgery at this moment (I am typing this from the waiting room).

  2. #2
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    Jan 2008
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    CD! So great hearing from you. Very sorry about that late progression. So strange when an skeletally mature person progresses so rapidly.

    Well you completely spared your daughter the brace. Had she been wearing it, the brace would have been credited with stopping the progression. Yet it stopped on its own. The majority of brace wearers might fall into this category as you know. Newton and his buddy recently calculate an overtreatment factor of about 9 as I recall.

    I wish your daughter luck. She will move past this and on with her life.
    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
    Aug 2009
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    I'm so sorry to hear this. I really appreciated your reasoned posting on the forum, and I imagined you and your daughter happily past all this. Very, very best wishes on the surgical outcome.

    I know you know better, but don't beat yourself up about it. You just cannot predict/protect against a rare outcome.

  4. #4
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    By the way, had your daughter worn the brace, not only would it have been incorrectly credited with stopping the progression but it also would be incorrectly gigged for only delaying progression.

    This bracing game is such an intractable research area. I am not sure an adequately controlled study could ever be done. The difficulties just multiply. We may never know if bracing works or not.
    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."

  5. #5
    Join Date
    May 2008
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    reno,nevada
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    Quote Originally Posted by concerned dad View Post

    Just when we thought this whole scoliosis saga was behind us
    Its never behind us.....I know I’m making people cry right now, but it’s the truth. When we do “ok” in any current state, we try to savor the moment almost like a fine wine. We also do ok in pain because we get used to it.....Scoliosis is what you make of it....and depends on your attitude which we find out needs to be positive most of the time.

    Yes, she became a remarkable young lady, I don’t doubt that. She is a scoli remember?

    And YOU are remarkable as a scoli parent....You have done everything correct.

    Be sure to fill us in. Glad you posted.

    Hang in there
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
    Join Date
    Aug 2004
    Location
    ny
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    1,809
    CD,

    I'm so sorry to hear of your daughter's late progression. Scoliosis can be so unpredictable. I wish her all the best. Please keep us posted. I'm sure she'll bounce back quickly - she's still very young.
    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
    Join Date
    Mar 2010
    Posts
    2,755
    Concerned Dad,

    I was just thinking about your case and wondering how things were going. I couldn't remember your screen name, though to review it. If I remember correctly, you were very proactive with your daughter for a time trying alternative therapies. I was very impressed.

    My story is similar to your daughter's except my progression hasn't been as much and mine progressed when I turned about 40 years old. I was skeletally mature with anywhere between a 37* to 39* curve depending on who measured it. I don't feel safe from progression but am not a surgical candidate at this time. So my interest is in doing alternative stuff that's non-harmful right now.

    I can't imagine the feeling you are feeling right now with your "little girl" in surgery (she'll always be your little girl). I hope everything goes well for her. Let's hope her youth gives her a quick recovery.

    Thank you for sharing!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #8
    Join Date
    Feb 2013
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    Tampa, FL
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    Thank you so much for sharing your story, I am new to the forum and really appreciate it. I think you made the best decisions all along for your daughter.

    Look forward to hearing more about her recovery and wishing you all the best.
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  9. #9
    Join Date
    May 2008
    Posts
    169
    Well hello you are back again, and then today I decide to have a look after many many months. You did everything any father could have possibly done for your daughter, investigated everything and I can remember you vividly. I even used to talk about you after you left here. Your daughter is going to be absolutely fine and you have truly done the right thing. Your beautiful girl will have a wonderful life and as Sharon said you will all move past it and things will go on normally. She is a very lucky girl, to have you as her father. All the very very best.


    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
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    CD....

    Welcome back. I was really sorry to read that your daughter was having surgery. It's just one more little bit of evidence that until they come up with something better, it's all really out of our hands. No matter how much effort we put into it, if someone is destined for surgery, there's probably nothing we can do to change that fact. I truly hope your daughter had a complication free surgery and that her recovery is an easy one.

    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  11. #11
    Join Date
    Mar 2009
    Location
    Arizona
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    Concerned Dad,

    I'm sorry to hear that your daughter's curve progressed but I'm sure she will make a full recovery after surgery.

    I'll send you some positive energy.

    Good luck!

  12. #12
    Join Date
    Mar 2009
    Posts
    1,090
    Hi CD,

    I'm sorry to hear your daughter ended up progressing. Darn the luck. Hopefully today finds your daughter up and around and recovering nicely!

    Thanks for coming back and updating, I think that is a good thing for people who post here to do over the years.

    Even though your daughter was skeletally mature at diagnosis, I still find it reprehensible that any doctor (or chiropractor) is not giving honest evaluations of cobb angles. As far as I'm concerned anyone who does that deserves to be put out of business. >:-(

    Nice to hear from you again.

  13. #13
    Join Date
    Apr 2009
    Posts
    1,258
    Hi CD ... Wishing all the very best for your daughter. Sometimes surgery is an absolute miracle, may it be that way for her. And thank you once again for all your truly meaningful sharing, made a difference in my life for sure!
    Idiopathic, from the Latin meaning: we're idiots 'cause we can't figure out what's causing it (TV Dr. House, MD)

    I'm not weird ... I'm simply - multifactorial

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