Reasons for not being able to write as consistently right now..

I've been writing this blog for about close to 2 years, and I've been posting at least something every other Friday since the start of this year. Before that I had taken a break for a few months when I was stressing out about work too much and pretty much dropped everything I had been doing at the time. I might be hitting that point but with medical problems this time. I'm not going to discuss any of it here. People can access my blog simply by looking up my name on Google, and I don't want to talk about it much on a page where everyone can see. It might sound silly considering how much I've written about my past and some current struggles, but that's the past and I at least don't feel people could use that against me now much. When I've spoken about current struggles it's usually things where the people who may know me or maybe have only met me a few times can use it to understand me a little bit better. Yes, it can be held against me and be used in a negative way but because it would only be the way I'm treated as a person I'm willing to take that risk. With medical problems it's something I'll rather keep it between people I'm close enough and trust enough to be Facebook friends with, and also others with the same condition but I'll still only give them a certain amount of information unless it's someone I've gotten particularly close to.

I don't want to stop writing altogether during the next few months, but it might not be necessarily every other week like it has been for the last 10 months. I had a couple posts that was a couple days late but except for that I've been pretty steady. I understand that writing is something that you can only do when you feel like it, and most if not all of friends that write blogs or other blogs don't do it on specific days so people who read it on a regular basis can get a idea of when to look for a new post. The Hydrocephalus Association and other foundations may, but I haven't been following their blogs very closely and haven't paid attention to when they post. Of course there's nothing wrong with posting just whenever you think of something to write, or as soon after as possible rather it's finding of time or just finding the desire to write. Posting on specific days was a idea that was brought up to me when I first got the idea to write a blog, and was asking for feedback from Facebook friends.

Considering you have to want to write to really do it, then I'm pretty impressed that I've been able to be this consistent with about 20 straight posts every other week, give or take a day since my last hiatus. Of course a few of these posts were guest blogs and others were ideas that I've gotten from others. As long as I still have ideas floating around in my mind, getting ideas from others and I have friends who are willing to write something once in a while I don't plan on stopping writing this blog completely any time soon. Medical problems might keep me more behind at some point, but if I know I'll need to take a hiatus again at any point because of it or other problems I'll try to post about so it wouldn't just been a sudden stop. I know people have many reasons to stop writing their blog but with a few of the blogs I've found I've noticed that they just came to a sudden stop a while before without any explanation at all. Of course people have reasons for a sudden stop like that, but it's something I'll rather do differently. I realize that people find my blog all the time because one of the posts show up in a search they do on Google, or on other transferring sites. I rarely get new followers at least that I know of but if they do or they just go digging through my other posts I'll rather not have them wonder.

By the time I had remembered to write it was the day after I normally post and I knew I wouldn't have much time to sit down and write something for another few days, forget thinking of a topic and doing research ahead of time. Thanks for reading and I hope that I'll be able to get back on schedule for my next post on the 2nd of next month.

Life with P.T.S.D (Post Traumatic Stress Disorder) Guest Blog by Keyt Harrington

Well, I haven't been here in a while! It's been a very busy summer with a bathroom remodel, a old-time buggy wagon restoration, farm remodel and me being sick with...what else..shunt issues.

I wanted to touch on something that relates not just to those with Hydrocephalus but everyone that walks with Earth. It's called P.T.S.D. Most people know it as Post Traumatic Stress Disorder, but I call it Please Take Seriously Disorder.
I was diagnosed in 1997 after having gone though a tumultuous marriage and divorce and subsequent issues between my parents that I was put in the middle of. I began therapy in 1999 and only stopped a couple of years ago. Here's a good description:

http://www.webmd.com/anxiety-panic/guide/post-traumatic-stress-disorder

Most people think of P.T.S.D. as something people who have been in war deal with. That is far from true! Only in the last 10 years or so are doctors starting to recognize this condition in various other traumatic issues. If someone has been through anything from physical or emotional abuse or even medical traumas can have this disorder and I fit the bill in both of those areas.

Really, my issues could go back to when I was in school. Most kids didn't understand why I was sick all the time. No one knew how could I be out of school for months at a time and come back looking a lot different than the last time I was there, or why I would come to school with bandages or bandanas on my head. Some people thought I had Cancer or some kind of contagious disease. Most kids were decent to me, but I did have a good share of them who took what they didn't know and turned it into something it wasn't. I learned to take it and even tease myself before anyone could and it eventually got better. That was until I got married.
Whenever my ex and I would argue, he would say things like "If you weren't so stupid" or "Why are you acting like a psycho", etc. That would set me off in ways I now find embarrassing but it eventually tore my marriage apart. Subsequent relationships didn't work out well either because I would think my boyfriends hated me for one reason or another when in reality, I hated myself because I was letting the past control my every day thoughts.

In 1997 after a terrible argument between my parents that led to me having a major emotional breakdown, I went to my room and was crying so hard I couldn't breathe. That was the last thing I remembered because the next thing I knew I woke up in a hospital. A short, stocky guy in a suit was sitting on the edge of my bed and he asked me how I was feeling. Other than a raging headache I thought I was OK. I sat up to talk to him and my stomach started to reel. The guy in the suit asked me if I wanted some water and he had some questions for me. What the hell, I wish this idiot would go away because I just want to sleep. I figured I was there because my shunt failed again, it's not like it was the first time I woke up in a hospital not knowing why!

During our conversation I learned I overdosed...again. No, it wasn't the first time and it certainly wasn't the worst but it would eventually turn out to be the most pivotal. I remember asking him why he even cared, I've never met a neurologist that did. He said he was a Neuropsychoanalyst - basically a doc that studies mind and brain. I asked if attention was brought to him because I had gone as crazy as a person could go. He said the best 4 words I had ever heard a doctor say; "You're far from crazy!". I spent the next week in the hospital being asked every question imaginable when Dr. Small said my issues were caused by P.T.S.D. I had never heard of it but I was very glad to have a name for it!

It's been 16 years now since that visit from the, as he called it, "Small name, long title" lol. I was on meds for years but when my neurologist changed my anti-seizure meds, I had to go off of them and increase the dosage of one of my anti-seizure meds which helps with the "freak outs". I still have issues now and then. For example last year someone called me a retard when I was acting silly. I hadn't told that person my issue with that word but it shut me down immediately and I wasn't able to speak to them for a couple of days. More recently someone had pushed me out of plans that meant a lot to me after we had talked about them for over a month. It reminded me of my childhood when kids would leave me out of something because they thought I was too stupid or embarrassing. I ended up saying some things to that person that I now totally regret and it still puts me in tears to think about it!

This is why I have spent the last 10 years not having too many close relationships. Telling people about my Hydro and shunt and multiple surgeries, etc is bad enough. Most people know what P.T.S.D. is and that has such a negative stigma it's worse than telling people I have a seizure disorder which really freaks people out! I have even had friends tell me it's just an excuse for crying, saying things I don't mean or shutting down so easily. It doesn't give me an excuse not to have friends and be a hermit because I'm afraid a social situation will set me off either, it's just a matter of finding a balance.

So, P.T.S.D. isn't about people who have been in wars panicking when they hear thunder or having bad dreams in their sleep. There are many forms of trauma which means there are many types of P.T.S.D. and doctors are finding more every day. Someone's anger, crying easily or shutting down may because of something they are going through now or have experienced in their past. Maybe they just need someone to talk to instead of being yelled at or ignored. Having Hydro and a lot of health problems with P.T.S.D on top of it is a personal hell to say the least. Going to therapy helped but it's my family and friends who were patient with me that helped the most. I can probably count on one had how many there are but they mean the world to me!

By the way, if you look at the symptoms of P.T.S.D., one of them is difficulty falling or staying asleep. I'm finishing this at 4:30 am...while talking to Tim =)

Putting things into perspective..

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.

https://www.facebook.com/HydroAssoc

http://www.hydroassoc.org/

Pediatric Hydrocephalus Foundation,specializing with families with children with hydrocephalus but not necessarily just them.

http://www.hydrocephaluskids.org/wordpress/

http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

More information of Third Ventriculostomy

http://neurosurgery.ucla.edu/body.cfm?id=428

Signs of being bullied

http://info.character.org/blog/bid/128143/19-Signs-Your-Child-Is-Being-Bullied-and-What-to-Do-about-It

Signs of suicidal thoughts

http://www.save.org/index.cfm?fuseaction=home.viewpage&page_id=705f4071-99a7-f3f5-e2a64a5a8beaadd8

Teen depression guide

http://www.helpguide.org/mental/depression_teen.htm

Attention needed from schools for children with Hydrocephalus (a view point of someone living with it)

Sorry I'm a few days late, I ended up working a really weird schedule this week and didn't have much time except for working and sleeping. I also had a hard time picking out a topic. I had some ideas but nothing that I could write a significant amount about it, and some that I feel would be going off too much off subject. I've decided to go back to a subject that I've talked about before. One of my main goals for this blog is to help people, and while I don't know about this from a parent's point of view I can write about this on a point of view of someone with the condition itself and from what my parent's have told me. I'm going to talking about what was does to keep me safe in Elementary school, and I realize that it's different for everyone. Some had more limitations because their childhood experiences with Hydrocephalus is a lot different, or because their parents or teachers were more cautious usually because it was a different time period.

With me most of what was done when I was participating in mainstream classes, I was unaware of until years later. I did have speech therapy until high school,and a few years of adaptive P.E, both in small groups or one on one along with a Individualized Education Program meeting each year. Each thing up until Special Ed classes starting in Middle school were things that I was pulled out of class for. So I still participated in regular P.E and it wasn't too obvious that I was getting help with either thing, although it's always been pretty obvious that I have a speech impediment, especially in Elementary school.

One thing that should be done with anyone with a shunt is that is either young or not be able to recognize their shunt malfunction symptoms is to have someone who knows what they are to look after the person. This includes parents,teachers or any other care taker. I didn't know that they were, and for years every time is was brought up I didn't know what they meant by it. Some did a better job than others and in some cases a lot better of a job, but with most it feels good now that they made a point to do that for me. Thankfully nothing major ever came up and except for the shunt placement as a toddler I had a surgery free childhood.

Another thing was that I couldn't play contact sports because if I got hurt it might have damaged my shunt. It might not sound fair to some people, but it was the one thing that my neurosurgeon told my parents I shouldn't do. I wasn't interested in playing sports anyway because of other physical limitations caused by Hydrocephalus. I learned a few years ago that many kids were left out completely out of P.E and had to sit out everyday. Most of these people were born a decade or two before me, and they were the first generation of kids to be born with Hydrocephalus to have survivors who could function, due to the invention of the modern day shunt. But there are some that are closer to my age who still had to sit out. My P.E teacher never had me sit out, instead she made rules that everyone had to follow that allowed me to play football, dodge-ball etc etc. The few times the activity was something that I wasn't supposed to do she made it a option for others to sit out too so I wouldn't be alone. If it something I needed help with due to physical limitations or not having depth perception when it came to gymnastics, I was it was offered help or given it without option.

 The one thing that was done that I was hadn't been done, was when she (or the school) had been participate in the track and field day at one of the high schools in the district. They didn't explain to me what was going on at all, and neither did my parents or they wouldn't have let it happen. They had me participate in a run with the more severely disabled kids. I don't mean to offend anyone, but there's a lot more I'm capable of than some others with disabilities. At least in high school the reason I stayed in Special Education classes was because of problems not getting into habits, and organizational problems. If it wasn't for done I would have been taken out of those classes my Junior year. It really hurt being compared to people with more severe disabilities in that way now. It hurts a lot more when I get treated that way now, but that was a major part in realizing what people think of me.

I'll love to talk more about this subject either on social media or by e-mail. It's the same with other topics, but this is one of the subjects I would like to talk about again in the near future using other people's experiences. Thanks for reading.

Pediatric Hydrocephalus Foundation

 http://www.hydrocephaluskids.org/wordpress/

 



 

What I wish I would have known about Hydrocephalus as a kid

I've probably already covered this subject, but now that I've made it half way to 100 posts (this is my 50th) I've decided to go back and write about certain subjects again. Some reasons is knowledge that I've gained since started writing, or things that I thought that I knew that are actually false. I want to reach people doing this, that I necessarily could reach when I first started this blog. Also if I write the same thing in a different way I also have a chance to help people that might not have understood the way I wrote it last time.

When I was 17 I knew very little about Hydrocephalus, even if it was something that I had since I was at least a toddler. The main reason for this was because I had only had one surgery, the shunt placement when I was about a year and a half. I knew that I had a shunt and where it was. I understood that I was dependent on it and what I shouldn't do to protect it. Different neurosurgeons advise their patients their parents to avoid different activities, and for me it was only one thing. My neurosurgeon told my parents that I shouldn't play contact sports. I also knew what my major shunt malfunctions so if there was ever a emergency with it that my parents and teachers (in Elementary school at least) weren't around then I would know what to recognize so I could alert someone right away. Thankfully it didn't happen during my childhood, but I was better off knowing it than taking a risk. I knew that my motor skills, and lack of muscle control had to do with it and that's definitely the hardest part for me, both now and then. I also always knew that I would need surgery at some point but I also figured it would happen in my childhood, and it never did. It didn't really get me down; it was just always something that was in the back of my mind but not something that I thought to hard about it.

It was my senior year of high school that I started to look more into Hydrocephalus. The site that helped me begin to learn about it the most and gave me a glimpse into the lives of people of others with the condition was Hydrocephalus Association. Just ten years there were still very few Hydrocephalus foundations and at the time HA was the only major one I could find. I did some serious lurking on Hydrocephalus/brain forums and e-mail groups but very rarely said anything. My main reason that I was hesitant to post was that I was having no problems with my shunt that I knew of and compared to how long the average shunt lasts before it malfunctions in some way my shunt was (and is) older than dirt. I wouldn't find out about all the smaller daily problems associated with Hydrocephalus until a lot later on with social media. If I would have known about the daily problems, and that I'm not the only one who has a shunt that has lasted far long that expected than I'm sure I would have taken advantage of at least the forums. I didn't look much farther into condition for several more years after that. I had no major problems at all until a few years ago so I had no reason to.

I had a few people with Hydrocephalus add me on Myspace because I mentioned it on my profile, but we but I would avoid conversation because I felt like telling anyone else with the condition how old my shunt was would make me look like a poser. I'm not sure if he was my first Facebook friend with Hydrocephalus but he was the first one I could remember at least. Around the time I started to have problems with my shunt request I got a friend request. Even if I don't know the person, I usually like to give people a chance to tell me why they decided to add me. With this person, I ended up not needing to ask once I took a look at his profile. He had everything I needed to know to keep him around in his "about me" section. He mentioned in it in his about me section that he has Hydrocephalus and that his current shunt has lasted him over two decades so far, and that the shunt that he had before that was one that he got as a kid. He was born in the sixties, during the first decade after the first couple of shunts started to be used. At the time he was born only 5% babies born with Hydrocephalus survived. It's the opposite today, but without sugar coating it people still die from Hydrocephalus or complications. It's definitely not a death sentence but it's not a condition that cannot be taken seriously and it's something that has effects of people's daily lives. It may be because of pain, but there are many other complications from it as well.

Through this one person I started to meet several others, and over the last four years my Facebook friends has slowly became more and more people affected my Hydrocephalus than people that I actually know. It sounds really weird, to both before who don't have the condition and even some people who do but it's been great always have someone to talk to if it's just something that someone without the condition won’t understand. Almost right away because of seeing the Facebook activity and having people with Hydrocephalus seeing mine, I quickly started to realize that a lot of things that I didn't think had anything to do with the condition is actually really common with it.

There are things that I didn't know for sure that had to Hydrocephalus but in the back of my mind suspected it for years. Some of those things included my lack of organization, problems with studying and short term memory. It turns out that a lot of the problems that I've had have to do with Nonverbal learning disability (not just Hydrocephalus).

You can learn about a lot of what Hydrocephalus or neurological disorders in general can cause just by searching for it online, though it might take a while and you really need to know what to look for. You can also find out about it with any of my blog posts that tagged with "brain injury side effects". It might sound kind of harsh by just putting it all under the subject under that one subject, because a lot of people with neurological disorders hate being thought of as having a brain injury. But a lot of the problems that people with anything having to do with neurological disorders are the same for people with traumatic brain injuries. It might depend on how you think of it, but having pressure on our brains (at least people with Hydrocephalus) and then having a medical device placed in our brains has to have some kind of damage to our brains, no matter how minor it is.

Personally, I think it's great to understand myself from information that has either been looked up by a Facebook friend, what I appreciate knowing even more is the little things that you might only be able to find out about by talking to others.

It's all stuff that I would have really liked to find out a lot earlier, but it's still comfortable to know that quirks that I had as a kid, that I never knew anyone else who had deal with it wasn't just me. It's sad at the same time but it’s comforting to know that I wasn't the only kid who would constantly lose jackets, school supplies and unfortunately a backpack once in a while. It's comforting knowing that I wasn't the only kid that had a hard time telling right from left, and had a reputation from getting lost and being left behind on the occasional field trip (I hope). Also that I wasn't the only kid who took forever to learn how to tie my shoes, and desperately try to hide it until I finally caught on. It's comforting to know that I wasn't the only kid (and adult) to constantly got crap for dragging my feet and not "walking straight".

The last thing that I mentioned sounds kind of weird and probably something that I could and should probably have been able to control. At least with dragging my feet usually it's something that I could help but I would have to really constantly have to focus on it. It's not something that I can prove but the first "Hydro peep" that I met on Facebook has a "Tennis shoe" theory. He's always had a problem with dragging his feet too, and his shoes are proof that he drags one for more than the other. I've always known that I have a problem with dragging my feet but it wasn't until around the time that I started having more major problems with Hydrocephalus that someone pointed that I tend to drag my one foot more than the other. The theory is that the foot opposite of the shunt is the weaker side so the foot on the opposite side of the body is more likely to be dragged.

 When it comes not being able to walk straight, it has to do with my ankles. It's caused my abnormal muscle pull, the closest thing to it that is commonly known is being "clubfooted" but the only images you would find on Google is severe cases. The ankles and feet don't have to be crooked to be described at that though. My ankles still aren't straight though, and I would get crap for it because it was close enough to being straight, that people thought that I was doing it just because I was "lazy". Constantly dragging my foot along with that didn't exactly help my case. It's most common with people with Spina Bifida, Cerebral Palsy, and Dandy Walker Syndrome. I don't have any of these conditions that I know of at least though, just Hydrocephalus. It's not uncommon with kids with another condition (like Hydrocephalus) to have it either, and it can be caused by other medical problems that aren't necessarily common muscle or neurological disorders. It can be fixed by leg braces and surgery, but both of them might not work. Braces were never mentioned as a option, and I didn't find out it could have been until I had help finding out about the surgery. I personally didn't have the surgery to fix it, and I only regret not wearing the braces. The surgery is controversial but it's still a pretty common surgery, where the ankles are broken and screws are put in to straighten them. I'm glad that I didn't have to go through that and I understand why my parents made the decision more now than I ever did as a kid.

Edit: We weren't charged for the appointment. But my Parents would have had to pay for the braces, if that was a even a option at the time. There was a 23 year gap between when the surgery would have happened, and when I found the information on it.

I've already got in mind what I'm going to be writing for my next couple of posts, and I needed to write this post to make any of it make much sense. Thanks for reading, and if this is the first time you've read one of my blog posts or only have a few times in the past, I promise most of them isn't this long :)

More information on foot and ankle deformities

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221758/

Pediatric Hydrocephalus Foundation

 http://www.hydrocephaluskids.org/wordpress/

Hydrocephalus Foundation

http://www.hydroassoc.org/

Information on shunts

http://neuroanimations.com/Hydrocephalus/Shunts/VP_Shunt.html

Teacher's guide to Hydrocephalus,including a lot of information I wish was more available when I was a kid

http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

misconceptions about shunts (that have come up in some recent conversations)

Hydrocephalus has always affected me in different ways, but it wasn't until I started to have my problems with the shunt itself that I started to talk about it. Up until a few years ago,the majority of the time that I mentioned it was on a need to know basis. Even then there were times where I feel I should have mentioned to people that was in the care of me, as a kid and especially when I was a teenager. When I started getting headaches a lot more often was when I decided not to say quiet about it. I talk about on Facebook once in a while, and I post a link to my blog there whenever I write something new. I've also at least tried to explain my condition when to my department heads,and whenever it's brought up at work. There's some parts where it seems to really hard to understand, no matter how much they want to. The most common is probably has to do with shunts. I'm writing this because I'll be posting it on my Facebook, where some of those people that are confused with the subject will be able to read this. Also if it's brought up at work,I'll be able to direct people to this blog post.

There are different kinds of shunts,and not all of them are used for Hydrocephalus. There are some that are used for heart or liver problems instead. But most commonly it's used for Hydrocephalus or other similar neurological disorders. Shunts are a valve and a catheter that drains cerebrospinal fluid from the brain to another part of the body,when the person's body cannot do this by itself. The drain usually ends in the peritoneal cavity, but with some people it drains to the heart or other organs. The shunt is usually placed in or around the skull going into the brain,but underneath the person's skin. The result is that it's usually visible,but it might not always be noticed by someone who doesn't know anything about it or doesn't know what to look for. Shunts could also be programmable or a fixed valve. A fixed valve is one that is placed at some point, but then there's no way of controlling it without surgery. With the programmable shunt the neurosurgeon can control the settings without needing to do any kind of surgery. Both kinds of shunts has it's own sets of risks and complications. Mine is a fixed valve, because the programmables weren't available until about a decade later. In some cases surgery isn't necessary but it's really rare. Then something that is a option for a limited amount of people is Endoscopic Third Ventriculostomy, where a hole is made in the wall of the Third Ventriculostomy so the fluid can be drained that way. But that options fails often as well, because the hole could close itself up.

What people seem to not understand is my shunt and why it's lasted so long. Mine was placed on September 15th,1987 and at least for now it has lasted me 26 years. For the first 22 years, it rarely even bothered me and the times it only did bother me enough to be noticeable a handful of times. When it did start bothering me  I went to the hospital for during a period of several months and both times I was told the shunt was working fine and it was probably something else. I was sent to the neurologist that I ended up stopped seeing when I was trying to transition from working two jobs to just one part time job.

It's very rare for a shunt to last as long as mine has, but it has nothing to do with a shelf life. There actually isn't any for shunts,and I've met others that has had the same shunt for years or even decades longer than I have, and most of them have very little or no problems with it still. So even if one of the reasons that I'm trouble with mine because it's old, that doesn't mean that's it's past a certain shelf life, because others with older shunts would be having the same problems. It's also pretty common for people to have constant problems with shunts, that are a lot newer. Also not all problems with shunts can't always be fixed by surgery, it sucks but it's just something that a lot of people have to deal with on a daily basis. 

The reason that it's a rare case, is because half of all shunts malfunction in some way during the first two years. Not because of a "shelf life" but because they either break, become infected, or become blocked. I've had people ask or tell me that I should try to force my neurosurgeon or other doctors to replace my shunt just because it's "too old". The reason that I don't do this is because just because this shunt has lasted so long doesn't mean that the next one will. When I do need surgery I will be facing the normal statistics of the life span of shunts. There's a 50% chance that I will never have a shunt last for more than 2 years ever again and I'll like to avoid that until I get to the point where I need to have it replaced. This may be soon, but this last something that people have been telling me since I started talking about it more. 

I covered a couple of the main misconceptions of shunts, specifically mine or others that has lasted a long period of time. If you want me to add anything else or have any questions, please feel free to contact me. If there's anything that needs to be talked about on this subject than I'll write about this subject again in the near future. Thanks for reading.

Media views on Hydrocephalus: Zach Roloff

If this is the first time reading one of your posts or haven't on a regular basis, my main purpose of writing is to talk about Hydrocephalus related topics that aren't easily found online. This can range from my own day to day experiences but also includes topics that aren't necessarily about Hydrocephalus, but about other neurological problems and brain surgery. Today I'm talking about a topic that I've written about several times already. I've been writing about people who are in the public eye (including film characters).

This week I'm writing about one of the first celebrities that I ever heard about having Hydrocephalus. Most of the public figures with Hydrocephalus that I've heard about has only been diagnosed during the last couple of years, or I didn't hear about it until the last few years.

Zach Roloff along with his family, are the stars of the Reality Television show "Little People,Big World". Zach along with his parents have Dwarfism, and the show focuses on living life day to day with it. Zach also has Hydrocephalus which was mentioned during a few of episodes during the first season, when he had to have a shunt revision.

Something that I noticed at that and really appreciate now is that not only was it mentioned on the show but his Dad was able to talk more about it. That's something that is normally not mentioned by other public figures who have Hydrocephalus normally wont or cant mention. If it is mentioned than usually there are few details mentioned,or wrong information is given.

I posted a few links below providing some more information, and a clip from one of the episodes where his Shunt and Hydrocephalus is mentioned.Thanks for reading :)


http://www.tlc.com/tv-shows/little-people-big-world/bios/about-roloff-twins.htm

http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm