Friday, July 26, 2013

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.

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

Friday, July 12, 2013

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.