James Update

So we saw Dr. Ciricillo and Dr. Hart on Wednesday in Sac. My grandma Audrey came with us, which ended up working out GREAT, and made James a lot more happy and comfortable.. Thanks, Great Grams! And thank you, mom, for watching Josiah all day.

So, I guess Dr. C and Dr. Gumpta (from UCSF) had already spoken on the phone before our appointment and basically made a decision about James. They both agree that there is really nothing that can be done surgically to address James' recent function loss or other symptoms.. The conclusion is that James' spinal cord itself is compromised, and further surgeries could just make the problem worse by causing more tethering along the spinal cord by adding scar tissue. I guess Dr. Gumpta recommended doing a shunt revision to his VP shunt, though, (the one in his head) in order to rule that out for good as the cause of his abnormal CSF flow, and Dr. C agrees that that is a good idea, since it is "common practice."

I basically don't understand this conclusion, because the MRI shows the ventricles in his head looking exactly the same as they did two years ago, indicating NO problems with the shunt...

So, I need to talk to the doctors about this some more before we decide whether to go ahead a try a shunt revision.. I am still processing all of this...

The immediate concern for everyone involved right now is this new diagnosis of autonomic dysreflexia (you can read about it here: http://www.sci-info-pages.com/ad.html) -- because when he is having his headache "episodes," he is also having some pretty severe spikes in his blood pressure, which can be very dangerous. Dr. Hart said that we need to sit James upright and think about cathing him if he hasn't been cathed in a while whenever he is having an episode. But he also said that we need to get more information about managing it from Dr. Houtrow, and make sure that he doesn't have any kidney stones or anything like that -- basically we need to find out what is triggering these episodes so that we can prevent them..

Apparently Amy Houtrow, head doctor at spina bifida clinic at UCSF, is an expert in autonomic dysreflexia, and that would be a great place for James to go to have that managed. Duh. I've been saying that he really needs to get into clinic ASAP for MONTHS now, and now that the best Dr. in the world - Dr. Hart - has made a few phone calls on our behalf, we have an appointment at clinic, with a bladder and kidney ultrasound, on Friday October 29th! YAY! And Seth is taking the day off work to go with us. So that is great news!

That's about all I know for now.

The saga continues.......