We have a plan

I have some Interesting/exciting-ish news (depending on who you ask). I saw Benny today. My neurosurgeon. And he told us that he just got back from an out of country conference and he spoke with a few different surgeons there. He said that a dr in Germany has a patient with 7 shunt assistants and an on/off button for her shunt. It’s under the skin and is basically a bubble like a regular valve that you push on to turn it on and off. So when she thinks she is over draining, she just turns off her shunt.

Well, it’s not fda approved in America yet. But he put in a request to the hospital for permission to put one in 3 people as “compassionate care”. His word, not mine. And I am one of them. He expects to have an answer in two or three days. Two weeks at the most.

If it’s not approved he’ll just put in more assistants (I have 3 right now). If it’s approved though then I hope I’m the first one he puts it in (pretty sure I would be) so that not only would I be the second known person in America to have a jugular shunt put in but I would also be the first known person in Wisconsin to have one of these put in. 

I’m just happy we have a plan. I’ve been suffering from severe back pain lately. It’s so bad that some nights I just lay in bed and cry. I’m praying this works out. 

This is a link to the device. My favorite part is where it says “non-invasive” but it requires surgery to place. 

https://www.raumedic.com/fileadmin/user_upload/PDF/Telemetry-Flyer-EN.pdf