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Any info on myelocystocele

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

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    • #3
      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.

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      • #4
        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

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        • #5
          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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          • #6
            I'm not sure if anyone is on here (it seems so quiet), but just wanted to post a little update. We had an ultrasound last week and baby is looking great! Still no changes in the brain, the lesion is still pretty small (about 1 cm), they still believe it to be skin covered, and nothing really new to report. Our MFM doctor seemed very pleased with the report (which I thought was great bc it seems like most people experience doom and gloom with MFM doctors).

            We're just praying now for little to no nerves being involved in the lesion., but only time will tell.

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            • #7
              Good to hear! If the lesion has good skin cover it means the first surgery does not need to be done in a crazy hurry.

              Yes it gets quiet here sometimes, but please don't let that stop you, the only way to end the quiet is to post something. We've had a few people join recently but they seem to be too shy to introduce themselves.
              Last edited by Dodger67; 02-27-2017, 08:00 AM.
              Roger
              Sumus semper in excretum sed alta variat!

              Comment


              • #8
                Thanks for responding. I feel like I have a million questions, but nowhere to start because as of now my child's condition is relatively unknown. I guess to start, is it true that skin covered lesions have less nerve damage? If so, why? Any advice or info would be great.

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                • #9
                  A skin covered lesion means the spinal cord is not exposed to amniotic fluid, which is a significant cause of initial nerve damage.

                  The "wait and see" period between diagnosis and birth is commonly said to be the worst part of having a baby with SB. After birth so many questions, that cannot be answered before, are resolved.
                  Hang in there, talk to us whenever you need (about anything), be kind to yourself and don't forget to breathe....
                  Roger
                  Sumus semper in excretum sed alta variat!

                  Comment


                  • #10
                    Hi there,
                    I used to frequent this forum but lately life has been so busy, my youngest about to be 7 has lipomyelomengingocele, which is rare, about 1/2 babies out of 10,000 are born with it. She was not diagnosed until birth, so that was a big surprise for us. However, we made it through, she had her first surgery at 6 weeks to detether her spinal cord and remove some of the fatty tissue. She did not require cathing right away, in fact we only did so for a week after her surgery. Life progressed, she recovered, had trouble walking, ended up with AFO's, physical therapy and began to walk on her own by 2. She did have a second detethering surgery at 18 months old and at that time we had to start cathing regularly (every 4 hours). Cathing is really simple, it seems scary but by the end of a week or so, you'll be comfortable and can almost do it blindfolded! My now 16 yr old has been doing it since she was about 13 for us so hubby and I could go out on a date.

                    I would love to talk to you more, you can read about our sb journey at my blog, but warning it's not been updated in a year or more but may be helpful right here at the beginning! www.oursbjourney.blogspot.com
                    Frances - Mom to 3 Lovely Girls
                    Our Spina Bifida Journey

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                    • #11
                      Thank you Rocketcitymama, I went on your blog and read through it. Wow, such an amazing journey with such a beautiful girl. How is she doing now? It sounds like she was thriving in your blog. Your journey started out so crazy. I guess I'm grateful that we found out 1/2 way through my pregnancy so we have time to process everything and prepare. Although it has been so emotional and hard, I can't imagine finding out just after birth and having to process while recovering

                      I hate the waiting and not knowing my baby's prognosis aspect of this condition. I've found some cases of myelocystocele on here and the stories seem promising, so I'm hopeful. I just don't know for sure if our baby even has myelocystocele. The other neurosurgeon seems to believe it is a meningocele, with no neural involvement but that seems too good to be true. We have about 2 more months or so before we'll know anything.

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                      • #12
                        Dodger, thanks for responding. You said it perfectly and I appreciate your understanding. I'm sure it's hard having us new moms come on here and freak out.

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                        • #13
                          Please freak out all you need, that's what we're here for.
                          Roger
                          Sumus semper in excretum sed alta variat!

                          Comment


                          • #14
                            Originally posted by Jelly83 View Post
                            Thank you Rocketcitymama, I went on your blog and read through it. Wow, such an amazing journey with such a beautiful girl. How is she doing now? It sounds like she was thriving in your blog. Your journey started out so crazy. I guess I'm grateful that we found out 1/2 way through my pregnancy so we have time to process everything and prepare. Although it has been so emotional and hard, I can't imagine finding out just after birth and having to process while recovering

                            I hate the waiting and not knowing my baby's prognosis aspect of this condition. I've found some cases of myelocystocele on here and the stories seem promising, so I'm hopeful. I just don't know for sure if our baby even has myelocystocele. The other neurosurgeon seems to believe it is a meningocele, with no neural involvement but that seems too good to be true. We have about 2 more months or so before we'll know anything.
                            You are welcome, it has been a crazy ride there in the beginning but right now things are going very well, hence the lack of posts on the blog LOL I should continue to blog so I can stay updated on there, life is just so busy these days between all 3 kids. She is still wearing AFOs and we are cathing every 4-6 hours depending on the day and fluid intake, we are working on a bowel regiment. Other than those things, she's a typical little girl. We attend a dance class for special needs students, and she absolutely loves it. We do homeschool right now, because that is what is best for her, but it may change down the road.

                            IMG_4256.jpg

                            IMG_4042.jpg

                            Truly the worst part is wait and see what happens for us. I mean she could need another surgery, but she may not. Due to the lipoma she does have a higher chance of re-tethering, but we just take it day by day and enjoy life. Enjoy your pregnancy the best you can, I guess that was the perk of not knowing, not as much daily stress of wondering the what ifs. We are here for you!
                            Frances - Mom to 3 Lovely Girls
                            Our Spina Bifida Journey

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                            • #15
                              She is absolutely beautiful! I'm glad to see/hear that life is more ordinary, despite everything going on. I have older girls, as well, and one of my biggest fears in the beginning was how all this will affect them. I, myself, grew up with a sibling that had significant medical issues so I know how hard it can be. My brother is doing well now and I wouldn't trade him for the world, so I know my girls will be fine too. It is hard to look at this from the parent perspective though. I want the best for ALL my kids and it hurts my heart knowing all that we will face as a family. One day at a time though. Your story and seeing how ok you are gives me hope that we, too, will be fine, so thank you for that.

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