Hello brother! I am about to turn 32 yrs old. Living in Chicago, born with aqueductal stenosis. Extra-cranial shunt placement at age 9 in 1991, revision at age 12 in 1993. Some mild depression and OCD, but generally pretty mentally and very physically happy and healthy.
Maybe because the shunt placement and revision were when I was a child? but I haven't done much to educate myself as an adult about aqueductal stenosis, or ask questions, or stay in touch with a neurologist/neurosurgeon.
Also perhaps because the shunt placement and revision were when I was a child, no one made mention of low lifetime survival rates or that it might inhibit starting a family, living a long happy life, etc. I was told the opposite: that my shunt and aqueductal stenosis would have no bearing/present no barrier to pregnancy or a family.
This week I've experienced a mild "burning" sensation around my where my shunt travels down the side of my neck and on the hemisphere of my skull where the valve is. Very different from the headaches and nausea I experienced at ages 9 and 12. But still worrisome. So. I'm scouring the Internet for What That Might Mean to prevent Freaking Out Too Much. Talking to my GP later today.
This is an old forum, but hoping it still points to your current email address, that you're a happy and healthy 40-yr-old :)
Quote:
Originally Posted by manikinxvx
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?
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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