Help with pre surgery pictures

[kcbock]

Hi,

We just got back from china (This past Thursday) with our 3 year old daughter who was born with Spina Bifida and it was repaired when she was a newborn. She does very well with mobility and is potty trained both pee and poo. We got a CD with a bunch of pictures and a developmental diary on her from her orphanage and we were shocked to see a pre surgery picture and a right after surgery picture as well. It was odd to see the picture becuase I had envisioned the menengycle as a bag outside the body but that is not what it looks like at all. It almost looks like (and remember I know nothing about SB besides what I have learned since accepting the referral for our Daughter) the cord just grew out of the body and based on the post pics, it looks like they just shoved it back in. I have no idea if that is the way they do the surgery but it kind of looks that way and since she really does not seem to have any side effects besides a large lipoma above her scar, I wonder if that is what they did for my daughter.

Can anyone look at the pictures and give me an idea of what you think they did. We have an appointment on Feb 18 to see the neurosurgeon for an eval as we need to get the lipoma removed, but I am very curious what you guys think.

Thanks so much for your help.

Christy

Pre picture

http://i185.photobucket.com/albums/x51/kcbock/DSC00349.jpg

Post picture

http://i185.photobucket.com/albums/x51/kcbock/DSC01668.jpg

[Liznjohn]

I am not a neurosurgeon, but my instincts tell me that a full spinal and brain MRI would be in order.

The most important question an MRI would answer is not so much what was done as it would assess what is presently going on and if anything else should/could be done. Are there any Neurological deficits?

John

[kcbock]

no she does not seem to have any deficits at all neurological or developmental. The reason I wonder about what they did is becuase at this point my daughter does not seem to have any SB related issues. She is very dextrous gross and fine motor and runs and jumps well. She also has control over bowel and bladder and has since she was 2. So I guess I am just wondering if there is a form of SB that would allow a child to be so functional-- can they just push the menengycle back in?

[jveprek]

Hmmmm, that's not at all what Madi's looked like, pre or post. And, with how hers was, there was really no way they could have just pushed it back in at all. Even if they did, the damage from being exposed I would think would have caused problems. Madi's sack was totally attached to the skin all the way around. I don't think I have a picture since they covered it up right after she got off my chest but I will look.

[jveprek]

Here is kind of an 'after' picture


http://i235.photobucket.com/albums/ee5/jveprek/100_2160.jpg

but no good before ones. I have lots of pictures, but all from the wrong angle to see anything, and then the rest just show it covered up.

[kcbock]

Thanks for the pic. Our daughters was way low in comparison and most of the ones I have seen are like you described as attached on all sides. My daughters just seems to be sticking out which is what confuses me. Since she is so functional I just wonder how she could go unaffected with the menengycle. Im just confused.

[Liznjohn]

Yes, my daughter had a myelocystocoele which was closed. No surgery was required until she was 4 months old. If the nerve placode is closed, that is, if the covering of the nerve is not exposed and if the nerve isn't tangled in the deficit, then yes, it is possible to have minimal to no deficits. This is the case with my daughter. However, she did require some spinal surgery to release the ligament known as the filum terminale and some of the spinal roots to prevent the nerves from getting stretched and thus damaged during her growth.

John