I was diagnosed with hydrocephalus in 1987 and shunted after numerous revisions and a complicated case with elevated protein in spinal fluid,stroke,muscle weakness,visual problems, continued headaches, a search was on for other diagnosis which was finally determined to be neurosarcoidosis/central nervous system sarcoid/sensory polyneuropathy,arthralgia,and possible ms I have been on immunosuppressives basically since 1995 and now they are not working. I am discouraged and am currently waiting to see an immunologist for further treatment. I guess what I want to ask is I basically have never been completely headache free except for maybe right after my first shunt was placed. I have went on other forums and have found that lots of adult onset hydrocephalus have chronic headaches also but we basically get the run around from our neurosurgeons that our shunts are working so where do we turn from there it is really difficult to wake up with a headache every day of your life. Help in texas, jeanna