Hydrocephalus And Aqueductal Stenosis Question
 

Hello,

When I had my last shunt revision I found out I had aqueductal stenosis. I was not born with hydrocephalus. I got hydro at six months of age due to menengitis. I thought that aqueductal stenosis was usually gotten at birth?

How did I get this disorder and why was it never caught when I was younger?And are there other ways of getting this disorder than at birth?

Ripplegirl99

New Member
 

Hi to everyone. I am a "newly diagnosed" aqueductal stenosis and NPH patient who ias desperately tryiong to learn som eobjective first-person reports of the outcome of shunt surgery. Remember when yioui first learned of "the only thing you could do" to reduce the headaches, the fatigue, the urinary spasms, etc. Please supply me with good info and/or accounts. Thank you. Charles K. Miller
Havertown, PA
(Biff.pa52GMail.com)

Hi I am new member. just had a VP shunt installed at 59 years of age. I have ben diagnosed with aqueductal stenosis also. The Neurosurgeon says it is congenital. In my case, it was initally discovered when I had serious balance and dizziness problems 6 years ago. At the time they said "it's chronic so we won't worry about it. The balance was attributed to a TIA or mini-stroke.

This current episode of balance and other issuesfinally brought the hydrocephalus to a head ( no pun intended). Only at this time was the connenction made with the bad headaches I had for years and years in my 20s and 30s.

In any case, I can't really answer your question but at least you are not alone.

It's Complex, According to the AMA...
 

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'?

Aqueductal stenosis and age
 

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?
____________________________





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]

Hey, manikinxvx....nice to meet you!

I'm 39 (well, one month shy) and I've had hydro since birth that the NS determined was a result of CAS...The first shunt failed in a matter of months, but the second lasted 23 years. This last one has made it 11 years.

My only real issue that developed from having hydro was weakness on the left side, due to the 2nd shunt paralyzing me...fortunately, I've managed to compensate for the weakness. :-)

Glad to see another long-lifer...

Anna

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.

[/QUOTE]

Hi Ripplegirl99,
I'm a 50 yo, I was diagnosed with enlarge ventricles and tention headaches 1987. I was hit on the head during combat manevurers in 1980. The actual ediolgy is unknown,however I can trace my headaches back to that incident. I had shunt surgery 12/2006, because of complication during surgery a Subdural Hemotoma developed requiring additional surgeries 4 to be exact. I guess I'm doing well, still on pain meds to control headaches, My short term memory got worse I currently am 100% IU 80% SC P&T and getting SSDI at a 100% rate. I can no longer earn a living. Its good I had paid enough into Social Security and served 18 years in the military. My life has totally changed.

Don't mean to scare anyone, but this is a terrible condition. According to my wife I'm much better, because I use to passout alot, get lost, lost by vision and the headaches were unbarable. I still have bad headaches,severe memory problems, depression, balance problems etc.. I would have the surgery again if I were in the same situation. I'm tried of writing. If someone has specific question to ask me I'll do my best to share my experience with you.
God Bless you

cyberlady29: Shunts can overdrain . I had that problem. I am an adult with hydrocephalus/aqueductal stenosis with a shunt to the atrium.

Did the VA do your shunt for hydrocephalus?
 

I was wondering if the Veterans Administration did your shunt for the hydrocephalus. I am a veteran rated the same as you but I am having a hard time with them wanting to treat my hydrocephalus or send me to a neurosurgeon. In Wichita it is fee based, both the MRI and the visit to the neurosurgeon. They keep getting me the run around. :)