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  1. #11
    Join Date
    Dec 2008
    Location
    Alabama
    Posts
    7

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    I still don't know which one I have...I can walk but with a sway..my left leg is shorter than my right one...and also have no feeling from the waist down on the back of my legs. The doctor's told my mother when i was younger that i had a mild case..but I'm not sure.lol either way I was born with SB.
    Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will direct your paths.--You are great at putting your trust in God. Keep following him and you will be amazed at what he does.

  2. #12
    Join Date
    May 2010
    Location
    Watertown Mass
    Posts
    18

    Default

    Quote Originally Posted by eng188 View Post
    Very interesting writeup, and it solved what has puzzled me recently: Only in the past year have I heard the term "cystica", and I thought it was just a synonym of myelomeningocele. But according to the above quoted text, it's an umbrella under which meningocele and myelomeningocele fall.

    Never even knew that (I am myelo, btw)

    I am also under the category of Myelo.

  3. #13

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    My daughter is also under the category of Myelo (L4). I still remember the first doctor when my wife was pregnant. He tells her that the baby will have Spina Bifida and she will be brain dead and tells her she needs to have an abortion. My father in law looks over to my wife and sas, "Let's get the hell out of here."
    She is now 9, in a above level school in a regular classroom, always on the honor roll. I am sure many have heard similar things from naive doctors It just boggles my mind.......
    I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. __Maya Angelou

  4. #14
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,112

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    Has that negative doctor ever met your daughter?
    Showing these people how wrong they are is the only way we'll get them to change their tune.
    Roger
    Sumus semper in excretum sed alta variat!

  5. #15

    Default

    No. The wife switched doctors and never looked back. I look at it that the doctor isnt worthy enough to be in the same room as my daughter
    I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. __Maya Angelou

  6. #16
    Join Date
    Jun 2012
    Location
    Kentucky
    Posts
    31

    Default

    31 yrs old SB myelomeningocele, I still have fatty tissue/tumor that is wraped around my spinal cord that can't be removed in risk of permanantly paralyzing me or killing me. I have a bad limp and bad hips, I wear plastic insert braces fron the knee down when I walk, otherwise I use a wheelchair most of the time. I'm finding with age and chasing a toddler wares one out quickly.
    ~Jennifer

  7. #17
    Join Date
    Jul 2014
    Location
    Milan, Italy
    Posts
    38

    Default

    Hi everyone,

    since Aurelia was born and we were told that her issue is not clear, I have read so many scientific publications about spinal dysraphism that I think I could take a university exam in Neurosurgery

    However, I think that this article here --> http://www.em-consulte.com/showartic.../pdf_57356.pdf <-- is well written and clear about the different types of SB.
    (Even if it does not include the particular type that my daughter may have).

    Hope it helps.


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