Gage's PT let me know a few weeks ago that she was concerned with his lack of progress, and even regression with his walking. It seemed that he was getting weaker and dragging his feet in his walker. We talked to the nurse at Spina Bifida clinic and got an MRI scheduled to check things out (and a new neurosurgeon in the process). The MRI was Wednesday and we saw the new neurosurgeon yesterday. Gage has 2 things going on that require surgery.
First, almost all people with spina bifida have something called a Chiari II Malformation. This is where the brain stem gets pulled too far down into the spinal column and it makes the cerebellum misshapen. We saw that on ultrasound before he was even born. The neuro ordered a flow study with the MRI, to see how much cerebrospinal fluid (CSF) was moving through the opening. Turns out it's not much at all. He will go in and remove part of his 1st couple of vertebre to give the brainstem room.
Second, and what's probably causing the problem, is an arachnoid cyst at about shoulderblade level. It's pressing on his spinal cord and probably causing his leg weakness. It's made up of stuff that's supposed to be there, so as far as I understand it, the surgeon will be unsticking it from the spinal cord. This will at least halt the damage it's doing and hopefully he'll regain the little bit of function he's lost.
All of this will require a night or 2 in the PICU and 3 or 4 nights on the floor. We thought surgery would be next Thursday, but apparently that day was overbooked, so as of right now, it will be June 22. We have requested that it gets moved up if there are any cancellations. This has been affecting him for over a month now. As we see it, the sooner we can get it taken care of, the better.
Of course we hurt to think about Gage having to have surgery again. This will be #6 in less than 2 years for him. We know that he's in God's hands, though, and this needs to happen. We appreciate everyone and their support and prayers! As Tony has said, it is what it is.