I get so tired having to do things like reviewing actual MRI images and telling docs what they really ought to be doing. How does anyone without medical training advocate for themselves in today's horrible medical system?!
I mentioned my husband's huge ventricles to the neurologist, and her response was that we'd talk about it at the visit in May. Meanwhile Hubby is a little worse every day. So I did an end-run around her and got an appointment with the experts in the JHU hydrocephalus clinic in May, so that will place us 3 months ahead in scheduling, in case a shunt turns out to be appropriate. That could save Hubby 3 months of decline in the meantime. Am I impatient? Yes, I am, considering that I knew hubby was having neurologic problems at least by 1992, but the docs waited until he was falling down and drooling before saying he has "atypical Parkinsons." just 5 years ago. Yes, I am sick to death of their foot-dragging.
Our medical system itself is sick and needs to be fixed.
