Member
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Join Date: Jan 2014
Posts: 124
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Member
Join Date: Jan 2014
Posts: 124
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So you started having these problems on earlier wonky shunt and haven't seen improvement on current valve? I've always read that regaining lost function in nph is not a given, have you seen other function regained after the bad valve was revised? My daughter has taken years to recover function, didn't even seem like a major loss at the time, thought just a minor setback (revision at 20 months, so her brain was still growing, surgeon thought she should snap back, ha! not even close to accurate, and soon after I realized that doctor is exceptional but my kid is not easy, but language recovered at different rate than gross motor skills - just one example). Have you had any neuropsych testing to determine problem cognitive areas and ways to strengthen or deal with the issues they can identify? How is the osv valve otherwise? What does your surgeon say about the fatigue? Can there be damage or other disfunction going on? Have you had the rest of your body checked out just in case (non neurosurgeons sometimes assume all problems are shunt related but I only encourage such lines of thought if it gets rid of a problem person or roadblock and moves us over to someone better able to help, have thyroid/low level csf infection/other suspects been cleared)?
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