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