Thursday, July 28, 2011

Encephalocele vs. Meningocele

     I've joined a few encephalocele groups on facebook recently and done some more reading about it on the web trying to understand more about it and I'm a little confused. It seems like an encephalocele almost always has brain tissue herniating into it. I know that wasn't the case with mine. It seems like what I have is more of a meningocele which from what I've gathered is just a sac filled with csf like what I had. But I'm still confused because I only read about occipital encephaloceles being located where mine was on the back of my head, and meningoceles always seem to be located down further on the spine and are only associated with spina bifida which isn't exactly what I have. Maybe I have a hybrid of the two conditions? I'm wondering if what it is I had was supposed to be an occipital encephalocele because it was a defect in the skull in the back of my head, but maybe it was so small that only csf and meninges got through the hole making it more like a meningocele. Maybe that's why they used both terms in my medical records. Maybe the doctors weren't sure what to call it. I've never really been told by a doctor what the difference is or what I should be calling mine so I usually just refer to it as an occipital encephalocele/meningocele just to cover all bases. Make sense? Anyway, if anyone knows anything about this I'd love to know more so that I can understand my condition better. Feel free to leave a comment about it!

1 comment:

  1. What FB groups are you apart of?? My daughter was recently diag with encephalocelle and I'm interested in meeting people with kids who have this spinal tube defect. email me at krward79@gmail.com. Thanks!

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