After Weeks of Waiting, Answers and More Questions

On July 26, 2006 Lexi had her MRI. It was another scary day that gave us answers which prompted more questions... Interestingly, a lot of this information is wrong...it took the neurosurgeon to finally explain it to us...her cord was technically tethered.

July 26th
"Lexi had her MRI today. This was a bit of a last minute surprise, but a good thing in the end. She did GREAT!! She was able to be sedated orally rather than with an IV, and came out of her little nap pretty much on her own, smiling and talking up a storm. We were at Children’s for several hours, but the actual MRI only took about 20 minutes.

Tonight we got a call from Dr. Raffalli, who is the Neurologist who ordered the MRI. He told us that while the results did rule out all of the really awful things we were looking for, they did find something funny. Lexi has a fatty filum, which is basically a part of her spinal cord that should be thin, but instead is thick. This is often a cause of tethered cord which means that the cord is pulled down below where it should be and causes neurological problems, however her cord is not tethered (and I think they are unclear about whether it could become tethered in the future, but I can’t really remember what he told me about that). But, we have to meet with a Neurosurgeon (appt. yet to be scheduled) to discuss our options. From what I understand, there has been some recent debate about whether it makes more sense to wait and see if the child has problems before doing surgery or if they should just do the surgery right away. From what I gather, *if* this at some point caused some neurological problems, they may not be able to fix the problems with surgery, so I guess some feel that it’s safer to just do the surgery. Also, apparently of all the tethered cord surgeries, this is the easiest and least invasive to do. I guess they just go in and clip it, and since the filum has no neurological function, there are no side effects to cutting it.

So, obviously this is really disjointed information. I forgot about 90% of what Dr. Raffalli told me 30 seconds after hanging up the phone, and then tried to do some research of my own to figure things out. We won’t know much more until we meet with the surgeon, and I’m very unclear about how quickly that appointment will be scheduled.

It’s scary, and now, of course, we’re going to be faced with some really tough decisions, but I’m glad that in the grand scheme, this is actually quite minor. I will keep you all updated as we get more information, but I don’t know when that will be.

Interestingly, Lexi saw a fantastic physical therapist yesterday who gave us some really great tips on how to help her to get crawling and walking. She is really motivated now, and hardly ever sits still… This poor kid is such a trooper…I feel so bad that she has to go through all of this. I was so hoping that we were saying goodbye to Children’s for the last time today…but I do realize how lucky we are to have such a fantastic hospital in our backyard."