This post is inspired by it being hydrocephalus awareness
(September) and a recent loss of few different people with mutual friends
through the hydrocephalus community on Facebook, one of them being someone that
I had connected with a few years ago and spoke to a few times. Hydrocephalus
has a much survival rate than it used to have 50 years ago. When the modern
shunt was first invented in the early sixties the survival rate was about 5%
and now it's basically the opposite with the survival rate being 95%. It's not
a death but people still die from it and I've lost a few that had spoken to
online, and some have their lives changed traumatically. I have to do with a
lot of pain right now at least partially because of hydrocephalus but I am very
fortunate compared to others.
It's also a lot common than people think
it is too, it’s just that it's a mostly invisible condition so unless you know
what to look for it's a condition where you might never notice that the person
has it or even if something is wrong with them. Hydrocephalus impacts everyone
differently and with some people you can tell that something is wrong a lot
more than others. Personally with me there are things about me where you can
tell pretty well that there is something different with me (especially with my
speech impediment and how I look).
1 in 500 babies are born with
hydrocephalus, and another 6,000 develop it within their first two years of
life (like me). Countless more develop it later on in life due to illness,
injury or other reasons and some that are unknown. It's the most common reason
for brain surgery in children, and the annual costs for hydrocephalus related
procedures alone are more than 2 billion dollars.
Shunts are thought to be a
"cure" by a lot of people who uninformed and that includes some
people who have a shunt, or the family members of the person with one. It's a
treatment and one that has few improvements in the last 60 years and those
improvements has been mostly been few and far between. Some of those
improvements (specifically programmable shunts) have caused more problems
although with some people those problems are worth how much it helps compared
to fixed valves. However with some people who have had fixed valves their whole
lives their bodies have a hard time adjusting to programmable shunts if it
happens at all. I don't mean to scare people by saying this, but I want it to
be taken as a warning just in case. I wouldn't say it if I haven't heard the
same thing from multiple people and have a link telling the story from one of those
people. I'm not a medically professional in any way, and you shouldn't take
advice from me like if I was one of them. What I say on my blog and basically
anywhere else (social media etc etc) should only be taken as someone who has
lived life with the condition and have spoken to many people who have it too.
Although the shunt failure was a lot worse
when they were first invented and the risk of serious injury was a lot worse it
still is a major problem today. Half of all shunts fail during the first 2
years, and after that the failure rate just keeps on going up so unfortunately
we're never in a "safe-zone". Nearly half of all shunt operations are
due to malfunctions, and another 12% are due to infections. Shunt operations
are performed every 15 minutes on average in the United States alone. Shunts
can cause many problems, and most of those things cannot be corrected by
surgery, it's just something that we have to live with.
There is a alternative to shunts, but very
few people qualify for it and it too has a high failure rate. The procedure is
called a Endoscopic third ventriculostomy and it's basically having a
hole put into the wall of a hole put into the third ventricle of the brain so
that the excess spinal fluid can be drained that way instead.
It's also common to think that after you put the shunt in
that we are just "fine". There are many challenges we have to face on
a daily basis because of Hydrocephalus and I have written about many of them.
The problem is that a lot of the problems we have (specifically pain and
neurological issues) are invisible so you don't notice to them and very often
it's not understood by a lot of people. A lot of times it results with people
just thinking that we are lazy or not trying hard enough. In some cases it will
cause bullying, even beyond childhood. I've personally had a lot of trouble
with bullying at work, more at the job that I'm currently at more than any
other. The time period I've been working there has had a lot to do with it (6
years as of this week, and the most I've stayed at any other job was a little
over 2 years). But still if I would have left after 2 years or just counting
the last 2 years that I've been working in my current department I still would
have had to deal with a excessive amount of bullying compared to any other job
I've ever been at. Some of it have been dealt with, but others can’t be proven
that easily or was brought up to management at some point just to be blown off.
We have to deal with a lot of problems growing up and then
as adults that doesn't necessarily isn't directly caused by hydrocephalus, but
it caused by having neurological problems in general. One of the most common
problems is learning disabilities, most commonly nonverbal learning disability
which is also very common with children and adults on the Autism spectrum or
people with attention deficit disorder. So we are commonly thought to have or
are actually misdiagnosed as having one or the other.
Another common problem is bullying as
adults too but more commonly as children. Basically it's done because of how
we're different and children who tend to be the bully look for kids who are
different or are just weaker. I
personally went through for 5 years of physically bullying started in
Kindergarten and ending in Fourth grade. The only times I was asking about it
was when the main kid doing the kid doing the bullying was caught a few times.
The campus monitor would always ask us if he was bullying me but they
would only ask when I was in front of him so I would always agree with him
saying "we're just playing". She would for some reason I don't
understand now accept the answer and not look into it further. I'm not sure if
I would have told her the truth right away if she would just pulled me to the
side and asked again later on, but I did always really wish that she would
have. I never told any teachers or my parents because of threats that was made
to me if I would have ever told and that I know of it was not something that
was always seen by teachers. I know some of my fellow classmates knew about it,
but either nothing was done or they approached me about it but never by trying
to force me to tell a teacher or them telling a teacher themselves. What
finally caused them to be caught was when my mom left my younger brother (who
was 4 at the time) with me at the school while she went home to for a few
minutes (we lived across the street of the Elementary school, and we still do).
What happened next was a normal thing for me but not something that had
happened with my brother around. When my mom left the group of kids came from
wherever they were across the street and jumped us. My mom came back catching
them in the middle of it and let the principal know what was
happening. They got in trouble and after that day I never had any major with
those kids again and even eventually became pretty good friends with a couple
of them. I regret not telling anyone before that day, just because my brother
was dragged into the situation along with me and he ended up being physically hurt
by a group of kids that were twice his age. It's not forgotten and probably
never will be, but at least most of those kids were forgiven a long time ago
even if it was never actually said. I'm not mad or holding any grudges at any
teachers or peers because especially with the teachers they didn't know what
was happening. Most of the time I was targeted was after school was normally
after school when nobody else was around anyway.
If you have a child with hydrocephalus or
any other disability or a caretaker of one like a teacher it's very important
to know the signs of bullying, and if you notice them to question the child if
possible on a one to one level. They might not admit it at first but the
response may indicate it even more so it's important to ask the child more than
once or at least keep a eye on what’s going on.
Another thing that a lot of people about
people don't understand about us is the emotionally problem that
comes with having hydrocephalus. This may include having a hard time showing emotions
when you should or having a hard time controlling them. Personally a problem
has been with anger, although I've have it under control more now than I ever
have before. A big part of it has to do with understanding it more, and that
has helped with a lot of things that has to do with hydrocephalus.
My biggest problem I ever had it with was
when I was going through puberty. Now it's pretty well known that people going
through that period of life has a lot of strange emotions. Imagine having those
emotions with a neurological disorder on top of it that causes emotionally
problems too. It's also about the age where a lot of us with Hydrocephalus
really begin to realize what people think of us, and often it's something that
is taken very hard. Most of time it's something that's not something that we
understand. I don't have any references for this when it comes to links, just
again my personal experiences and hearing other's experiences. In my case and
with many others it can cause us to become really angry at the world, depressed
and in some cases (like mine) have suicidal thoughts.
There's many other problems that come with
the condition that a lot of people don't understand and many of them I've
covered in other posts. You will also find a lot of them in the hydrocephalus
teacher's guide and other links I'll be posting below. Thanks for reading, I
hope I've helped you understand me, yourself or someone in your life a little
bit better. If you have something that you'll like me to talk about in the future
please don't hesitate to ask.
A lot of the facts I used was taken from
the Hydrocephalus Association Facebook page.
Pediatric Hydrocephalus
Foundation,specializing with families with children with hydrocephalus but
not necessarily just them.
More information of Third Ventriculostomy
Signs of being bullied
Signs of suicidal thoughts
Teen depression guide
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