Mar 07, 2008
My two and a half year old daughter has spina bifida. When initially diagnosed (birth) we were told she was probably around L4-S1 somewhere. About a year ago, because of her lack of function (she can't even roll over yet...), we were told she's probably got damage in her thorasic region somewhere. BIG change. She's had a shunt placed, 1 revision, had back closure at birth, and had a "chiari decompression". We found out when she was a little over a year that she's missing her cerebellum (they think she probably had a stroke in the womb). She had a spinal MRI done (first one ever...) in the beginning of Feb and we found out that she has spinal cysts along her spine. We were told it looks like a strand of pearls (all different sizes) along her spine. Obviously this isn't spina bifida related, just like the missing cerebellum. We're suppose to have some follow up tests run within the next couple weeks to try and figure out what's going on. They're going to inject some dye into her shunt resevoir so they can get some better pics of her spinal fluid when they do the CT scans. I'm VERY anxious and nevous about this. Not the tests, but just what's going on in general. I can't find anything online about spinal cysts and we don't have enought information right now to really google what type of cysts they are or anything like that. Can anyone with some medical background help me speculate what's going on? Please? I'm going crazy not knowing possibly what these are and if they're adversely affecting my daughter. Of course we've been through quite a bit in her short life thus far and are not worried about possibly having more surgeries (it's going to happen often in her life...6 so far in only 2 years...), I just hate not knowing some answers when I know there's questions about what they saw in her spinal MRI. Help please?
Also, anyone who wants to talk spina bifida please reply! I love discussing it.