Thursday, October 25, 2012

this week..

This week 25 years ago,I was recently diagnosed with hydrocephalus and was having my shunt placed.I was diagnosed at 17 months and my parents were told multiple times that I didn't have it because of my lack of symptoms.A volunteer nurse ended up diagnosing me,and refereed us to a neurosurgeon.At the time my parents were told that I would probably need a revision every 2 or 3 years,and that it that my shunt *will* malfunction within about a 10 year period of time.He said if it didn't happen that it would mean that my hydrocephalus would have fixed itself and my shunt would have malfunctioned but I wouldn't have needed it anyway at that point.I made it past the 10 year point and this week I've had the same shunt for a quarter century.

I've found out since that both of those statements were wrong.50% of shunts malfunction or become infected within the first two years,so I had about twice the chance of my shunt malfunctioning as what they told us.70% of shunts malfunction within the first 10 years so although the risk is higher it's not impossible for it to keep on working.Also I know for a fact that my shunt still works because of a couple CT scans from a few years ago.At the point my shunt was working the same way it was 14 years earlier when I had my last CT scan done. I've had few problems with it until a few years ago,and the only time I really remembered thought of it was when I had to turn down playing contact sports as a kid.

I understand how blessed I am,and I doubt that it will be many more years before I need to finally get it replaced.No matter what happens in the future,I'll always be thankful for a "pain free" childhood and a normal life for several years out of high school.Thanks for reading..

Tuesday, October 9, 2012

not every case of hydrocephalus in the same

It's been a couple weeks again,and I've been busy or sick.During that time I've been having problems coming up with with topics as well.Something came to me as I was trying to fall asleep tonight.It's something I didn't grow up knowing,because I didn't grow up with other kids with and had little contact with anyone else with it around the time I was diagnosed and treated.It's something I didn't know when I was struggling with being "different" as a teenager.So I want to make sure that I can be a part of making sure this might not continue to happen.

Each case of hydrocephalus is different and many are not the "textbook case".For example unlike most babies born with hydrocephalus or diagnosed as a infant,my head didn't grow really any larger than normal.Then the average person with hydrocephalus end up having half their shunts last then two years.But since that's the average there's many who have shunts for decades,or need constant revisions there whole lives.Then there's the people who end up switching from one extreme to the other.

This is the same with many things to do with hydrocephalus.Many struggle to keep up with other kids when it comes to motor skills and some take years to keep up.Then there's kids who meet all their milestones without problems.

It also has to do with mental function,and not just with how well someone can learn.It also has to do with how much someone can understand things overall.If you get to know me you'll see where my problems are and how severe they are at times.But also if you ask to a lot of others with the same you'll learn how they can function etc etc and then compare them to me.

It seems like there's always a lot of people who are a lot better off or a lot worse with my medical condition in many ways.Knowing this it's helped me to understand myself a little more,not feel like such a poser,not feel so bad about myself and feel lucky to be where I'm at in life.Even though I still feel awkward and nervous that people won't see me,just the "disability".Sorry for the wait,and thanks for reading:)