I want to start by saying your partner is a lucky guy to have someone like you in his corner. Hydro can be scary and if not treated properly a severe health risk. The good news is it can be treated and that there are treatment options. Shunts are not normal procedure and as luck would have it (or not) as the case may be, they have never, ever worked for me. But another procedure called ETV has. No need to go into the long explantation here. With an ETV you don't have any hardware in your body but the procedure has a shelf life of about 6-7 years and then you need a redo. But, it does give you your life back. A
As to education - I have a postgraduate degree, work full time for the agency that regulates health care. My colleagues may have their own opinion as to my "normalness".
As to the other suggestions on the website that your guy access his health records. There is no good reason why they should be withheld from him. Honestly. Unless, he doesn't know who the original doctors were, of course. Medicine has made amazing strides including the perception of doctors towards peoplw with rare conditions. Ok, it could be better but I assure you, it isn't nearly as draconian as it once was. Consider taking to someone to get a baseline and then go forward with a good/happy life.