Monday, February 24, 2014


After much insurance craziness we finally were approved for James's MRI and spent the entire day at PSL getting this milestone accomplished. 

MRI's are commonplace in babies with hydrocephalus. It is important to have a baseline to compare to when there is a potential shunt malfunction. When we needed a revision last time, the radiologist compared his CT scans to the head ultrasounds from BEFORE James had a VP shunt placed. I realize that the radiologist was no neurosurgeon, but he was unable to figure out that the scans would be inappropriate to compare to. For instance, he didn't notice that James had a VAD in his head in the ultrasound and a VP shunt in the CT - two totally different devices! So we ended up delaying our revision a few days and making several unnecessary trips to the ER. When we finally saw our neurosurgeon she took one look at the shunt and could tell that we needed a revision.

These types of errors are exactly why we have baseline MRI's in the first place. For the professionals to compare the "healthy" brain to one that might need a shunt revision. 

We were also looking at the lumbar spine to rule out a tethered cord. James has some slight dimpling on his lower back that was indicative of this - and though it was on the bottom of the list of things to accomplish I figured it was time to find out for sure.

We spent the whole day at PSL. We saw a few of our old friends (Dr Hansen and Dr Randolph) and tried to keep Maisie entertained although what she really wanted was to walk and run around the whole hospital. The scan was done under general anaesthesia and was to take an hour and a half. It took nearly three hours - and when we met with Dr Osterdock we were enlightened as to why. 

James did phenomenally but as per usual, he had a few surprises for us. 

He has a tethered cord, for which we will do surgery for in the near future. It is a minor surgery but we want to take care of this before it impacts his motor skills or bladder / bowel functions. 

He has arachnoid cysts along his middle (thoracic) spine, which are compressing his spinal cord. The origin of these cysts are unknown - it could be from his IVH or another cause. Our neurosurgeon has yet to decide how she will handle this finding. 

James's brain is interesting - not unusual for him but maybe for someone else. Osterdock wasn't worried but seemed intrigued. He has no Periventricular Leukomalacia from the Intraventricular Hemorrhage. We figured he would be in the clear but several doctors kept pressing us that this was the case (he only showed echogenicity and never any cysts). Also, the MRI showed an unusual shaped cerebellum and we aren't sure if this may be impacting his motor skills. His ventricles are doing fine and the shunt is working. 

So: in a nutshell our neurosurgeon is conferencing with a few of her counterparts about our Little Dragon's scans and we will reconvene next Monday. 

1 comment:

  1. So glad his MRI went rather smooth, will be interesting to follow this and see what they make of his cerebellum shape, do they usually operate on children to remove spinal cysts ??