Today we got a better idea of the physical details of Mason’s brain and spine with an MRI. It took about 2 hours and Mason was under general anesthesia. Having talked to neurosurgery over the phone here is what we’ve learned:
- Mason’s ventricles (fluid spaces in the brain) are looking great. His shunt is working well for now.
- He has good fluid flow in his brain above the brainstem.
- He has diminished fluid flow below the brainstem - expected because of his Chiari (brain grew out of position down into Cervical vertebrae of his neck).
- There are currently no syrinx (fluid pockets) along his spine. This is a good thing. Fluid pockets = pressure = nerve damage.
- His structural opening in the spine begins at the 3rd Lumbar vertebrae (L3) and goes down into sacrum. This is about what we thought based on prenatal ultrasound.
- His cord/nerves do look like they may be attached to the back closure scar over the area of L4-L5. Not unexpected and may require surgery as he hits growth spurts later on, we won’t know unless it happens.
The great thing is this baseline scan gives us a place to start if Mason ever begins to exhibit further nerve damage or a loss of function. We can repeat the scan and see if there have been changes. It also looks pretty much how they expected, which is good, no surprises.
What we do not really know is why Mason’s function is so much worse than his structural opening would suggest. He functions as if his opening began 4 vertebrae higher, around T11/T12. What that means is that all the nerves in those four higher vertebrae, which are enclosed by bone and protected, somehow were damaged in utero.
It also shows why so much of Spina bifida is ‘wait and see’. While a doctor can look at the physical structures on a scan and make an estimate of what nerves are going to be affected it is just a guess. The reality can be better or worse. In our case it happens to be worse.
What this changes for us is absolutely nothing! Mason is our determined, cheerful little man who continues to bring joy to every day. His body has been created on purpose by a loving God. There were no mistakes or accidents. Mason’s earthly body is the temporary house of his eternal spirit and will one day be perfected. We’re enjoying it just the way it is for now!