I am sorry to burst your bubble, but there are many of us out here who have defied what the so called experts have predicted for our outcomes. Had my wife listened to the so called experts, I would have been warehoused in a nursing home on Christmas Eve of 1998. I went back to work in August of 1999 and haven't had any revissions since. Aquaductal stenosis is not always accompanied by mental retardation. 40 to 50 years ago, yes, but there are treatment options available now. Endoscopic lasers weren't available then as they are now, nor were shunts.
I was first diagnosed in 1978 at age 16 with aquaductal stenosis and am now 48 and live independently other than a very patient wife.
Amy - the "intimate relations" headaches - they're brutal.
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Originally Posted by amy.hs
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'?
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