Ugh. That’s what comes to mind after talking with the nurse practitioner at neurosurgery. Mason’s surgeon moved to a different state last month so we were going to be under the newest neurosurgeon. Well, it turns out she is only at our hospital 2 weeks at a time, then she’s at a hospital in Boston for 2 weeks, and so on. She also thinks that come January she will be moving to another state. So we’re not going with her. We want continuity of care for Mason as much as possible. So now we will be assigned one of the other two neurosurgeons and start the process.
The process, unfortunately, doesn’t look like fun. The first route may be brain surgery or brain/abdominal surgery to check all the parts of Mason’s shunt. Ugh. Ugh. Ugh.
Then they’ll do imaging for the spine checking to see if there has been any major changes like a tethered cord. But the MRI for that is done under general anesthesia and they’re booking in November/December.
Then we may end up with spinal surgery and the attendant risks of further nerve damage and paralysis worse than he already has.
Oh, yeah, and the foot and hip may end up needing surgery to cut the now tight tendons, casts, and a healing process. They’re not sure.
Where we’re at now:
WAITING. Because whichever neurosurgeon we end up with (both I like, have met, and Mason had one of his shunt revisions with) has to review the case and make an official plan.
I hate that they think that digging into the shunt should be done first. After 5 shunt revisions in 4 months last fall/winter (brain surgery – UGH) it has been working perfectly since November. If they open it up and bump things around we may spiral back into a series of revisions as the brain matter is stirred up and clogs tubes again. Ugh.
Needless to say we’re going to be praying about it all. I understand that if it is just the shunt we can get into that soon and hopefully fix it, all while we’re on the months-long waiting list for the Spinal MRI. But if it is NOT the shunt and they stir things up in there we may end up with a bunch more brain surgeries to fix clogs when everything is stable right now.