Sunday, October 23, 2011

Neuro Update

So, as I talked about during my last post, Ruth's MRI report from her MOMS trial follow up in San Francisco showed some concerning areas.
  • The quarter size hole in her skull he made to perform the ETV has not closed, in fact the MRI shows there is fluid built up and the bone actually has a slight upward lip to it, indicated there is some pressure.
  • Her ventricles are still enlarged.
  • She has syrinx (build up of fluid) in her spine, and her spinal cord has become tethered to scar tissue at the bottom instead of floating freely.

We expected these things meant a shunt was likely in her future, although we did not talk to a neurosurgeon while in San Francisco, we did already have a scheduled appointment with her neurosurgeon back home the week after we returned. Rachel was nice enough to overnight all the reports and MRI disk (since we had to leave too early to wait for them all), and I called her neurosurgeon nurse and spoke with her. She said as long as Ruth is acting fine there is no reason to bring her in sooner than her scheduled appointment (a week out).

So, the day of the appointment we were all but certain her doctor would be having us schedule a shunt surgery. We were pleasantly surprised! Her head circumference is back on the normal growth curve, and her ventricles are SMALLER than her last MRI before her ETV surgery. He was not happy with the fact the bone has not healed, but unless it gets worse, he can "live with it" like that. So for now, the main things we are watching for is her head circumference to start increasing too fast (go back off the normal growth curve), and the fluid to start bulging out of the opening in her skull. He didn't feel like she would exhibit other symptoms of hydrocephalus, since it is mild and has a very slow progression.

I asked him about the syrinx and tethered cord. He said unless it's causing problems, they do nothing about them. So, that may mean a surgery a few years down the road, or next year, or never. Another one of those wait and see things.

We will continue to watch her closely, and she has a scheduled "rapid" MRI - with no sedation, and a follow up appointment in January. Please continue to pray for no surgery! It is working!

Here is the only photo I took (with my phone) during her appointment. Ruth was sitting in my lap and I was holding my phone out trying to grab a photo of her, and her Daddy decided to be a goof in the background. So, I'm sure he will love that I am posting this, but that's what he gets!! :-)