To the zero readers

I think it’s about time for an update to the zero people that read my blog. My neurosurgeon called asking if my mom and I wanted to go see a play with his family and a few nurses from his office but my mom told him I wasn’t doing well. He said “what do you mean she’s not doing well?” I’ve been having high pressure pretty much every night and have been sleeping with my bed up (it’s adjustable).

We thought my shunt was intermittently getting clogged but that didn’t make sense since I was still over draining during the day. He said he thinks all the shunt assistants are keeping it from draining when I’m laying down and we could switch them out for the miniNAV. I’ve also been having severe back pain. 

He gave us an update on the icp monitor. The fda did approve the device however the company in Germany refused to give it to us and the more my surgeon talked to the company he decided that it wasn’t a good fit and he didn’t want to pursue it any further (try to get it). I was really disappointed. However, there is another company in the us that is a well known medical device company and I have had their shunts before (I can’t remember the name right now) that also has one but again, it’s not fda approved and is currently in the testing phase. 

He is trying to get approved to be a testing site (again for three patients). He’s hopeful that he will get approval since they approved the previous one. I just hope all this happens soon. The amount of pain I am in is crazy.