I posted last week about cognitive issues I've had my whole life - to be honest, I was under the impression that this was rather common for people with hydrocephalus and I was looking forward to hearing how other folks have dealt with it. So far I've had quite a few views and no responses. I'd love to hear from some of you, even if your experiences are very different from mine. Just trying to wrap my head around everything.

I'm struggling with this issue myself. I've known for many years that my brain anatomy is unusual, and last year I had headaches and was diagnosed with triventricular hydrocephalus from aqueductal stenosis. To make matters worse, or at least ironic, I'm a practicing neurosurgery PA for the past 11 years. I've seen a specialist who utilizes endoscopic third ventriculostomy surgery, which is much better than a shunt and avoids most of the complications of implanted hardware. It is considered ideal for my condition, because there is evidence that my body can absorb CSF, if only my large ventricles are allowed to drain to the arachnoid granulations at the top of the head. My wife, who is a Family Practice MD, and incidentally, or not, has been separated from me for just of 6 months, thinks that it "causes" my so-called anger problem. I had about 5 episodes of urinary spasm resulting in frank incontinence over the past year and a half, which had prompted my neurosurgical advice. I've been feeling better for the last few months, and I'm kinda blowing off those signs(if they are connected) and thinking that I just have "arrested hydrocephalus" which probably will not change with treatment. Stress definitely has a negative effect. There is more I can say, but this is getting long. What are your symptoms, may I ask??


"I posted last week about cognitive issues I've had my whole life - to be honest, I was under the impression that this was rather common for people with hydrocephalus and I was looking forward to hearing how other folks have dealt with it. So far I've had quite a few views and no responses. I'd love to hear from some of you, even if your experiences are very different from mine. Just trying to wrap my head around everything."

Wow a neurosurgery PA, that's great. But it sounds like you're in the perfect position to continue to get good advice so I hope you won't continue to blow off any signs. Better safe than sorry!

You and I definitely have a very different situation. I would never have the capacity to work in neurosurgery! For lack of a better word, I've always been incompetent in a lot of ways. I have such a hard time thinking and focusing and understanding so many things. If I'm at a meeting at work I'll have no idea what's going on. If I've read a book or watched a movie, though I may enjoy it, I'll usually have a very hard time remembering what it was about. My sense of direction is absoutely horrific. I can't drive a car myself (from what I've read that's common for folks with hydrocephalus) but that's good, because I'd never ever be able to remember where I parked. If I visit your house and have to walk down the block or something, I'd better hope I've written down the house number or else I may not know which house is yours when I come back. My motor skills are terrible when it comes to games and spots and things.

I've given specific examples but the truth is that the bulk of it is something that I can't really describe - again, incompetence is the word that comes to mind. It's very frustrating, at the very least I wish it was something I could clearly define/explain so that people would understand what I'm dealing with.

I cold say I have some cognitive issues, too. I can't say I definitely thought it was the hydrocephalus; just all the surgeries Ive had and stuff. But could it be? I guess so. Good to know someone else feels that,too.

Thanks Kzpk. Believe it or not I posted that months ago and I still check back here every once in a while to see if I get any responses.

hello and welcome. I have cog issues, but no hydro issues. Maybe the title of your thread drew in some folks who walked by and wished you well, but didnt have anything constructive to add, or advice to give. Maybe some were hoping to find answers in the answers you got, but were surprised when they saw no responses.

We talk about this all the time. Even tho there are 150 or so in the MS place, sometimes a thread will get 500 views, and only 5 responses. We did a poll and asked folks why they didnt respond, and the answers were all over the place. From "I didnt think i could add anything helpful" to "i was being nosey when I stopped in" to "just wanted to read the post, offer a prayer and move on" to "started to write a quick response that was quickly turning into a novel with me venting about MY situation, which clearly wasnt going to be helpful so I deleted my post, wished them well and moved on." other said "felt horrible. had cog issues, and couldnt formulate a good response, so I moved on, hoping to come back later. its hard to expect a bunch of sick folks to come up with instant good ideas some days. Weather changes, season changes and holidays tend to be the worst of it.

I do hope you are starting to get some answers. As for ME dealing with cog issues, I take notes. I depend on my smart phone for my calendar, my pill reminders, books on tape, cause I cant follow a written story line any more. and the timer function on it is amazing! I can set 4 different timers, so I can set limits on what I am doing without becoming lost in it.

Feel better (hugs)

Thanks Dejibo. I do a lot of list-making and leaving notes for myself, it helps a lot. To those of you who who fit Dejibo's descriptions below - bah, leave a dang response!