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  • Toddler Spinal Cord

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    Old 05-08-2012, 01:46 PM   #1
    Sabby1
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    Toddler Spinal Cord

    My three year old son just had an MRI and it revealed his spinal cord is too long. (it's causing a bunch of issues for him) Has anyone ever heard of this? When I google it for more information, nothing comes up? Just wondered if anyone has heard of such a thing. Thanks for reading!

     
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    Old 05-08-2012, 04:59 PM   #2
    jennybyc
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    Re: Toddler Spinal Cord

    Has anyone mentioned that he has a tethered spinal cord? From what I understand, that is the big problem with a long cord.....that it gets caught at the bottom of the canal and they have to release it.

    You might try doing on search on tethered cords and we do have some people here who have had tethered surgery both as children and adults if that is the problem.

    I think your docs need to give you more info so you can educate yourself and understand what your dear little one is suffering from. I hope and pray he'll be okay. Nothing worse for a mom than a sick little one.

    gentle hugs.............Jenny

     
    Old 05-08-2012, 06:14 PM   #3
    Sabby1
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    Re: Toddler Spinal Cord

    Hello and thank you for the response- originally, the surgeon thought it was a tethered cord, he did the MRI and it did not show tethered, but that the cord itself is too long. We have an appt with him next week. I was just wondering if anyone has ever even heard of this. He is three, and he has hypotonia, and severe constipation. He falls a lot. The doctor said this spinal cord that is too long could be the cause of all of his issues. There just isn't a lot of information out on this that I can find. Thank you again for the info... I just want to get it fixed so hopefully his issues can be resolved.

     
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    Old 05-08-2012, 06:45 PM   #4
    VinG
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    Re: Toddler Spinal Cord

    As someone who has a somewhat rare congenital disability (muscular/skeletal), I have found that it is extremely helpful to go to a university hospital setting in a big city, as opposed to regional doctors. I'm 48, and I grew up 2 hours north of NYC, and my mom would drive me to Columbia-Presbyterian for care. Even now, I live in NJ and an ortho surgeon out here told me to go to Hosp for Spec Surg for my ACDF. Not sure where you live, but it might be worth the trip. Most cities have great pediatric centers.
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    Had 3 level ACDF C3-4, C5-7 in May 2012 for "severe" canal and foraminal stenosis

    - Vin

     
    Old 05-09-2012, 02:41 PM   #5
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    Re: Toddler Spinal Cord

    I agree with Vin on that.....get to the biggest and best children's hospital you can get to. It can make a huge difference.

    Hugs............Jenny

     
    Old 06-10-2012, 04:13 PM   #6
    Sabby1
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    Re: Toddler Spinal Cord

    We go to Rainbow Babies and Children Hospital in Cleveland, OH- I was wondering, could an MRI miss a tethered cord? We don't know what to do next, would we see a neurologist, or a neurosurgeon for a low lying cord?

     
    Old 06-10-2012, 05:53 PM   #7
    Sabby1
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    Re: Toddler Spinal Cord

    We go to Rainbow Babies and Children's Hospital in Cleveland, OH. I was wondering, does anyone know if an MRI can miss a tethered cord?

     
    Old 06-10-2012, 06:03 PM   #8
    jennybyc
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    Re: Toddler Spinal Cord

    I know an MRI can miss a tethered cord as we've had adults here who just found out they had a tethered cord and previous MRI's had missed it.

    But hopefully you're at a really good hospital that will work to find the answers you need. You're a good advocate for your child, mom....keep it up.

    hugs.............Jenny

     
    Old 06-10-2012, 06:24 PM   #9
    Sabby1
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    Re: Toddler Spinal Cord

    Thanks for that! I am sorry for all of the questions, but, we have an appt. with a neurologist on July 5th, should we be seeing a neurosurgeon instead? Just wanted to pick your brain on this....... Thanks!!!

     
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