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.

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.