As both a healthcare professional and a person with a chronic disorder that is not well understood, I expect my healthcare provider to take my concerns seriously, which means that if I tell him/her that something is "not right" then they need to address it, even if that means helping me understand why I shouldn't be concerned. Just telling you not to worry about it, it is not enough, especially with a condition like hydrocephalus where the early warning signs that you are having a problem vary greatly from person to person.

I have many examples throughout my life where doctors treated my concerns with the respect they deserve and where they didn't. In the summer of 2009, I had two VP shunt revisions related to a peritoneal cyst and then a VA shunt placement when it became clear my abdominal cavity had enough of being a reservoir for CSF. I relocated to another state that fall and when I had my first appointment with my new neurosurgeon, I asked about a bulge in my abdominal cavity that wasn't there before. The doctor said that I had a "unique abdominal landscape" (and I was quite overweight at the time) so I shouldn't worry about it. When I persisted, he ordered an abdominal CT "as a baseline." He called me with the results about a week after I got the scan and said "everything was okay" and that I should follow up with him in about a year.

Over the Christmas holiday, my sister and I went shopping and while we were in the fitting room trying on clothes, she voiced concern about the bulge in my abdomen that "looked like something out of Aliens" and suggested I get a copy of the radiology report. When the report arrived, radiologist clearly stated that I had AN ABDOMINAL HERNIA, which my neurosurgeon never bothered to mention when providing me with my radiology results.

The whole thing turned out very positive because I wound up losing 85lbs after my general surgeon recommended that it would help decrease the likelihood of such a thing reoccurring and I was highly motivated to avoid any more surgeries but I definitely got a new neurosurgeon!

I hope that provides you with some direction/understanding/support