Learning issues/disabilities
 

Hello everyone. I'm in my mid-thirties with congenital hydrocephalus. I am so foggy headed, I feel so frustrated and incompetent. Lately it's really been bothering me, I guess the older I get the more it troubles me that I'm not "normal." Honestly, I feel like such a dummy and it seems like nobody understands. Does anyone else have similar experiences?

Really, just me?

response
 

Hey whats up? I'm Brian. I got hydrocephalus at 37 from an arachnoid cyst. Brain surgery always changes people. I get foggy sometimes and it is from the days that i'm bedridden from the severe pain. I'm on social security disability. I still have trouble coming to grips that I have this horrible condition. If it rains or theres a pressure front I have to stay in bed all day. Did you file for ssd?

NY....

I was foggy for some time after the shunt, but I have been improving.
I know what it is like.... a strange, almost drunken state, and poor concentration and memory.

I am fortunate that it has improved though.

My only symptom now is the abdominal discomfort from the CSF re-absorbtion in the olde abdomen.

Thank you for your replies. I was born with hydrocephalus so it sounds like what I'm dealing with may be a little bit different from what you folks are experiencing - for me it's really just cognitive issues/learning disabilities. As much as I struggle, I know in some ways I'm lucky that things aren't worse.

Zubenelgenubi, glad to hear you're improving. Brian, sorry to hear about your pain, I know how hard it must be. You're in my thoughts.

I'm not sure if SSD would be an option for me, it's something I hadn't thought about.

Regards,
NYG

I'm 27 and have had Hydrocephalus since I was 8 weeks old. I had some delays in motor skills but then picked up when I started to school. Since about junior high though (when I started facing things that required a level of complex thinking) I've had some issues. Things that are common sense to others isn't so much to me. I have issues with concentrating and staying focused. I had my shunt replaced this year with from a fixed pressure valve to a programmable valve. It's caused lots of headaches and dizziness. Still not feeling 100% but someone able to function in my daily routine. I have my days. I'm working full time but it's so hard some days. If I get off track of what I'm doing it takes awhile to get back on track. It takes me awhile longer to do things than most people. Also, have problems with anxiety (get stressed in crowded stores, worrying about what people think when I'm trying to complete a task, etc) It's so crazy b/c as a child I never had all these issues. Just in the last few years.

hello, i was diagnsed with hydrocephalus at the begnning of this year (2012) at age 19. it was caused by a benign brain tumour n the pineal gland. this caused alot of different systoms for me. ill attempt to list them but i may forget to include a few (funnily enough memory is one of them!). dizzyness and headaches which seem pretty common, my periods stopped 3 years ago after a very delayed start, poor balance, incontinence (this has got to be one of my least favourite symptoms), poor concentration, lack of focus, awkward movement. i remember once when i was walking to work i had forgotten how to use my legs to walk! i had to sit down for 20 minutes to stragetize how i would get to work on time. my speech often did not flow well and i would forget what i was saying.
i could go on but i wont bore you!

im currently studying very much part-time however im finding studying unbearable 1.because i cannot complete tasks in the required time frames and 2. ive developed depression from the shock of it all! These 2 sysmmptoms are really the only ones remaining apart from light sensitivity, dizzyness and insomnia occasionally however theyre enough to impact my life greatly.

i dont know how to move on and make peace with myself when these symptoms are ongoing. i used to be so capable and now i am constantly pushed down :(

I definitely know the feeling!!! I also have congenital hydrocephalus due to a ventricular brain aneurysm. I have had it my whole life(45yrs.). My (ex)wife n' my (ex)fiance(even though she has it too, due to being abused) blamed me for having hydrocephalus.

What you are going through, is what I went through in college. I ended up, dropping out twice. While my hydrocephalus is congenital due to a ventricular brain aneurysm when I was born. I always had trouble studying in(and for) school.

I also know the feeling of constantly being pushed down.

I have an online friend, who was just diagnosed in July 2012 who thinks she will have no problem when she goes to nursing school to become an LPN. I know otherwise.

:)you are normal my friend. Young family member 42 with hydrocephalus following brain surgery at 12 months. I know it is rough out there. You make it a point to let uthers know you are ?"
"ok" he is 42 and maintains the fight. Read, talk, discuss things with others, sing like no one hears, dance when you can and laugh as much as you can. Good luck

We are normal...normal is over rated anyway
 

I knew I was Hydro Cephalic since diagnosis at age 9. All I was ever told through life was, don't hit your head. But I was told I would have to try harder to keep up with everyone else. I had a stress ulcer and lost 90% of my stomach during my original hospital stay. Most issues I have ever had came from the stomach issues, and those were all due to scar tissue issues. I was a study case when diagnosed as they did not yet know much or anything of "Onset Hydro Cephalic condition. It was said I must be like a miracle to have survived so long. I only had two brain surgeries at the age of 9. The shunt being put in during my second. Since, I have lived what I think may be an above average life. I won Music, Art, and Photography awards, became a three palmed Eagle Scout, went to college and eventually earned a degree, married a body builder young grandma at age 27 and became an instant PaPa. I went to the Philippines the summer after 9/11. And I have a small but world outreach ministry. We are all different as others have said. I was told of my life expectancy of 30 at age 33 while my wife was losing her battle with Cancer. Point is... I am soon turning 50 in February. No one knows the future. Live life to the fullest possible, considering our individual conditions. Cherish what we have now. And thank God for having each other for all this support. I have been seeking to find you for a long long time now. Thank you again for being here. I am definitely here also for you.:grouphug:

Foggy with a chance of brain...
 

Hi All,

My name is Lon (or nickname Diffie). Although I have had hydrocephalus since I was a baby, I somehow survived without treatment until I was 36. I always had the feeling of being "foggy" - difficulty organizing my thoughts, staying on track, focusing, etc. It has been considerably better since my last surgery (April 2012), but I still have days when I do not feel "clear." In school, I was called "slow" and a "daydreamer," and although I tested well on IQ tests, my grades were average or below. I had a lot of problems finishing work on time and became frustrated when time limits were placed upon me. I hope that things improve for those of you who are still navigating through poor "visibility."

Btw, I am happy to respond directly to anyone who would like to connect personally. I am active in many social media outlets. Just pm me.

Best Wishes,
Lon
(Diffie)

I think anytime the brain is messed with, including surgeries insertion of foreign objects, etc., I think you injure a little part of the brain and the more you have the more damage is done. I am convinced I have learning disabilities because of hydro and the many shunt revisions I have had. Sometimes I feel angry that no one caught on to my LDs. But inspite of it, I graduated college with 2 degrees. I totally get the foggy-headed feeling and the feeling like I just am not as smart as others. But I try hard to focus on what I can do and what I have accomplished. Still though, it's hard not to feel bitter. I totally get what you are feeling.