Since I don’t post here as much as I should right now I figured I should post a link a blog that I do update on a regular basis currently. Just leave a comment on a post, or send me a e-mail with something in the subject bar letting me know that you’re legit. Also you can find us on a few different social networking sites that I (Tim) check on a regular basis, and on occasion a different admin as well. The links are below
I have no idea how the Reddit thing is gonna work out but I figured it’s worth a shot
It’s been a few months since I’ve posted anything on this site. I’ve been focusing mostly on appointments with my General practitioner and my neurosurgeon,work, the Gotshunt social media pages, my other blog(s), among other things. I wasn’t sure what I was going to write about in the blog part of my blog, and that resulted in putting it off as well. I was reviewing some comments and found a recommendation on what to write about from a few months ago.
I have a blog that I write every other Friday that focuses on day to day life with Hydrocephalus. Some of these topics focus on things that are unusual about me, that most with Hydrocephalus don’t deal with, or at least not the same way. While others are things that a lot of others with Hydrocephalus deal with, but may not have really thought about or considered to be part of Hydrocephalus. On here I’m going to share parts of my story and hopefully my fellow admins will have a chance to do the same. They keep busy too so it will be a while before they are able to post.
I’m going to post about the time period where I was diagnosed. I don’t know when I developed Hydrocephalus. It may have be congenital, but it also may have been at birth or during the first few months of my life. I didn’t show a lot of symptoms of Hydrocephalus, I was developmental delayed and couldn’t even hold myself up at all. At some point before my diagnosis I didn’t finally start and slowly started to crawl. I dealt with being “developmentally delayed” through childhood and still now, but I was a lot worse off before being diagnosed. This is common for people living with Hydrocephalus but usually there’s a lot more symptoms that go along with it. The only known symptoms I had was high pitched crying/screaming, and my head was slowly growing because of the fluid build up. My head was 50cm by the time of my diagnosis, but that was after over a year and most of my baby pictures my head doesn’t look much larger than normal.
My parents had at least two different doctors tell my parents that “nothing was wrong with me”. When I was about 14 or 15 months old my family went to a free clinic. At the clinic of the volunteer nurses noticed the size of my head. She found out where we were living at the time, and showed up at our house. She did measurements and told my parents that I had Hydrocephalus. She then confronted the doctors that had told my parents that I was fine, and got us a referral to a neurosurgeon. Before my parents realized how much she had done she had disappeared before they could thank her or even before they even found out what he name was.
I was diagnosed in August of 1987 when I was 15 months old and my shunt placement was about a month after. A MRI showed that I had very little excess cerebrospinal fluid in my third ventricle of my brain, possibly not enough to be diagnosed. But there was a much larger amount in my first and second ventricles.
I plan to post a couple more times in the next few days but I’m working a kind of a weird schedule during the next couple days so I’m not sure when I’ll be posting more of my story. -Tim
I’m probably not going to use to blog feature much yet,but I’m posting this so the front page doesn’t look so empty. For information about the page and resources you can find links in the menu above.If you want to help or have any ideas of what you want me to blog about let me know.-Tim Landry