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  1. #1

    Default Any info on myelocystocele

    I am currently 25 weeks pregnant and at 19 weeks my baby was diagnosed with sb (s4/s5) via our 20 wk ultrasound. This was a huge shock because my bloodwork came back normal. The ultrasound showed no hydrocephalus or chiari II, and everyone seems to think the lesion is probably skin covered. We met with a neurosurgeon at the hospital closest to us and he said it looked like a meningocele. That seemed way too good to be true, so we decided to do the fetal MRI. We live in Chicago so we had it done at Lurie's and got a second opinion. The doctor said that she believed it was a myelocystocele. Just out of curiosity I brought the MRI to the previous doctor and he's standing by his diagnosis of meningocele.

    I realize this is all a wait and see thing. My husband and I want to believe it is a better prognosis, but we also don't want to feel blindsided again. I've been trying to research myelocystocele but I'm not finding a ton of info about it. Is it similar to myelomeningocele? What can we expect in terms of prognosis? I have a million questions. Does anyone have any experience with this type and, if so, do you mind sharing with me? Thanks!

  2. #2
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,112

    Default

    Welcome! Congratulations on your baby
    "Myelocystocele" and "myelomeningocele" are the same thing, just a different name.
    Roger
    Sumus semper in excretum sed alta variat!

  3. #3

    Default

    Thanks! I was under the impression is was different because it is a closed defect. Right now they believe it is skin covered because my blood tests came back negative and baby doesn't have hydrocephalus or chiari II. It's really hard to find info on myelocystocele. I read some cases on here, which was helpful, but I still can't help but feel a little lost. We're obviously hoping that it could still be a meningocele, but don't want to bank on that bc chances are it is not. I wish the neurosurgeons were on the same page too! Anyways, thanks for the response.

  4. #4
    Join Date
    Oct 2010
    Location
    Perth, Western Australia
    Posts
    12

    Default

    Congrats on your new baby!

    Despite sacral SB, my DD is able to pee naturally but have always had retention and needs to be cathed 2x/day.
    Besides that, she doesn't have any other physical impairments.

    I found this video to be informative about sacral SB:
    https://www.youtube.com/watch?v=BgDM9r4QHUk

  5. #5

    Default

    Thank you! We're excited and quite nervous at the same time. I'm just anxious to find out more after the baby is here. Thank you for the video link. She does a great job of explaining things. Cathing is a huge concern for me, but i am sure we'll do what we have to do when the time comes. I'm really bad with medical stuff (makes me sick) so I'm extra nervous, but i am sure I'll just do it for my child. I appreciate reading people's experiences, especially the adults with sb that post. It makes me feel better for our child's future.


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