My husband is 41 and just diagnosed. He is a programmer/analyst with an IQ in the upper range (>130). We were told that 40% of the time, cases do not become syptomatic until adulthood. Now whether or not that's true remains to be seen, but that's the information. We're waiting on our neurosurgery consult. He has severe headaches, breaks out in sweats, nausea, and has worsening sypmptoms when he exercises, has 'intimate relations,' etc. In other words, when his intercranial pressure rises, so does his headache pain.



UOTE=manikinxvx;461104]I'm a 35yo male from Wisconsin born with aqueductal stenosis. I have had several shunt revisions, and I'm kinda just looking for some answers to some basic questions.

1- I have been told by 3 different medical facilities that I am the oldest living survivor of congenital aqueductal stenosis. And, that I should have died years ago. Is this true? Is there anyone else out there born with C.A.S. who is now over the age of 35? (I hope so)

2- I was born with ONLY aqueductal stenosis. I suffer from no mental deficiencies, however am afflicted with many 'behavioral disorders' (eg: depresssion, social anxiety disorder, OCD, etc.) which has progressed to a debilitating level, and I am now on total Social Security Disability. Is anyone else on this forum as lucky as me, born with no other conditions other than aqueductal stenosis?
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3- I have three biological children (all girls). I have been told that, because my condition is always accompanied by mental retardation, from what I've been told, that my children are the only children born to someone with congenital aqueductal stenosis. Is this true? Are there any other parents/offspring of someone with CAS 'out there'?[/QUOTE]