Lexi's Neurosurgeon was like our very own McDreamy. He looked like he was about 15, but I quickly fell in love with him. He was kind, clear, and just the best doctor I've ever worked with. We felt very confident (well, as confident as we could have been) putting our daughter's life in his hands.
"So, here is today’s update… The information that we were given from the neurosurgeon (VERY nice, by the way) was not too different from what we have been told. He did explain the “tethered” and “attached” thing to us so that we finally understand it. He said that people use the term tethered to mean two different things… While her filum IS attached (which many people refer to as being “tethered”) it is not pulling the cord below where it should be. He said it’s like on a sailboat…you can have the boom tethered to the boat loosely so that it can still swing back and forth, or tightly so that it can’t move at all. Right now the spinal cord can still move up and down the spinal column, but, because the spinal column (the bones) grows faster than the cord, any time she has a growth spurt it could cause the cord to become too tight…which could then, in turn, cause all sorts of neurological damage. So, he highly recommended (and we agreed) that surgery is the way to go…
He did show us the images from the MRI (which was pretty cool) and he showed us where you can see the fatty filum and how it is attached… Well…he showed us a white speck on the screen and told us that was what it was…but it was still interesting. Also, when he looked at the hemangioma on her spine he said he wished he had medical students in that day because it was a textbook marker for tethered cord.
This is what we were told about the surgery:
It will take about 45 minutes. They will make about a one inch incision in her lower back and put a little microscope in there to see the filum. They will then snip the part of the fat that is attached, put two stitches in the cord, two stitches in her back, and send her off to recovery where we will be waiting. She will have to stay in the hospital for one or two days (depending on how well she is doing) where she will have to lay flat on her back. Then, once we bring her home, she can pretty much go back to regular activities!! (Which, by the way, includes CRAWLING now!!) The risks are VERY low, and the biggest risk – neurological damage – is the very same risk we are trying to avoid with the surgery. So, we all feel VERY confident in our decision.
Before the surgery we will have a urodynamics test to check her bladder function. This is really just to see if it is normal or not. If not, it will be good to see if the surgery improves the bladder functions. If it’s normal, it will be a nice baseline for the future – if she has trouble potty training, we can test her again to see if the function has gotten worse. If so, it’s a sign that the filum has re-attached.
The urodynamics test will likely be scheduled in the next three or four weeks, and then the surgery will be about a week later. We will have actual dates by Friday, we’re told.
Here is a link to the Children’s website that explains what I just wrote in a much clearer way. http://www.childrenshospital.org/clinicalservices/Site2163/mainpageS2163P0.html
Aside from all the craziness, Lexi continues to do so well. She is crawling, talking up a storm, and just the happiest baby on earth. We’ll be very happy when all of this is behind us."
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