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

recognizing the differences between neurological disorders and Attention Deficit Disorder.

My intentions are not to claim that all kids diagnosed with Attention Deficit Disorder are misdiagnosed, because there are many children and adults who actually have it. However there are many more that are misdiagnosed either because the problems they have are even misunderstood or just not looked into. I am one of many kids with a nonverbal learning disability that was misdiagnosed as Attention Deficit Disorder. I ended up never taking Ritalin for it, but it was something that teachers and others had fought to try to get me put on. Even though they were fighting to put me on Ritalin years earlier I wasn't diagnosed until near the end of elementary school (at least that I remember). I remember testing for it a couple times but I don't remember for sure which time I wasn't actually diagnosed. I do know that I tested out when I was either 18 or 19 when I was transitioning from high school/college to the work force with vocational rehabilitation. I know many others with nonverbal learning disability was put on Ritalin, some tested out or were taken off it when they were young. But I'm sure that there are adults who were misdiagnosed with it as kids who are still taking it.

Nonverbal learning disability is something that's common with people with neurological disorders, either something like Hydrocephalus or a Autism Spectrum Disorder. It is also common with people with Attention Deficit Disorder, but shouldn't be thought to be limited to it. Putting it very basically, it’s when people have really hard time processing information when it's not in verbal form. For a much better description and for information that you would usually not find online I posted the Hydrocephalus Association's teacher guide. It explains a lot of what I had to deal with as a kid but the information wasn't available to my teachers, parents or me so it was thought that I wasn't trying or at least not trying hard enough to do some pretty basic things.

Also there are other side effects to Hydrocephalus and brain injuries in general that affect how well people can pay attention including just simply not being able to pay attention for long periods of time to certain tasks, memory and organizational skills.

I really do encourage anyone with Hydrocephalus, or especially a child with it check out the information Hydrocephalus Association has posted. The same if you're just interested in learning about it and you're a teacher with a student with it or may have one at some point. I think there's a lot more than could have been done for myself and others, if people would have had better access to the information in the past. Thanks for reading.

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

Media views on Hydrocephalus:Chi Cheng (of Deftones)

This is the first time I've written about someone that has recently passed away. I had found some info about his brain injury, and I was trying to find more when he passed away on April 13th.I decided to put off writing about him because I didn't want it to seem like I was writing about him just to get views for my blog because of how many people must have been looking him up that week. While I have some other ideas for what I want to write about, none of them is anything that I would have been able to finish on time.

Chi Cheng was the original bassist for the alternative metal band Deftones, and played with them for two decades until his accident. Chi was seriously injured in a automobile accident in November of 2008. He had spent the last four and a half years slowly recovering. He had several surgeries and after being in a coma, he was recovering at home and was able to at least move his limbs and he was starting to be able to speak. He passed on April 13th when his heart stopped after being rushed to the hospital.

I had heard about his accident, but I didn't think about what the result of his brain injury could have been. Recently I saw that he had surgery to replace a bone flap in his skull that was removed shortly after his accident. What caught my attention about this was that this is the same surgery that former state rep Gabrielle Giffords had and she was later had a shunt placed and diagnosed with Hydrocephalus. I decided to look more into, and I never found anything about him ever been diagnosed with Hydrocephalus however he did have surgery that treats it. The surgery he had is a ventriculostomy (sometimes also called or referred to as a ETV, or a Endoscopic Third Ventriculostomy).

I don't want to claim that he had Hydrocephalus, but the surgeries he had and the descriptions of what was going on makes it seem that way. I don't know why it may have never been brought up, but it's common that people who to be treated for the condition without finding out what it's actually called. What I do want to do  is use this post to raise awareness for people who may have gone through the same but was never diagnosed. I hope that I can encourage those people to look into it, and find the help that they wouldn't be able to if they didn't have a name for it.

I also want to use this post to encourage people to donate or at least bring awareness to a cause. The "one love for Chi" site was put up soon after his accident by a Deftones fan, and posted updates on a regular basis on Chi. You can even help her out by going to her merch page or leaving a donation on her own page. All the money earned goes to whatever needs Chi's family has now that he has passed, and also the Chi Ling Cheng Special Needs Fund. Thanks for reading :)

The first link is to the "one love for Chi" site

http://oneloveforchi.com/

The second link is the Hydrocephalus association ETV Fact sheet,so the procedure that he had can be  better understood.

http://www.nhs.uk/conditions/chiari-malformation/Documents/ETV.pdf

The third is my source that I used that talks about the second procedure that Chi had,the first being the bone flap operation he had.

http://oneloveforchi.com/chi-in-neuro-icu/

What makes you happy? (Guest blog by Keyt Harrington)

The last few guest blogs I have done have been pretty grim so this time I thought I would talk about something a little more light-hearted!

For those of us with medical issues we spend a lot of time talking about it to everyone from doctors to friends and family. Honestly, my family wasn't really one to talk about it without making me feel like I wasn't going to make much of my life. It was early on my life, around 5th grade that I fell in love with photography. My parents didn't care much for it so on every vacation we took I became the one responsible for the camera. Because back when I was kid doctors always thought people with shunts couldn't go in airplanes, we always drove from Michigan to Colorado or Washington State which is where most of my mom's side lives. I didn't mind it for a few reasons; I absolutely love car trips, we got to see all sorts of tourist attractions and it was the only time my parents got along lol.

My 6th grade year I only went to school a few months because I ended up having 3 shunt revisions in a row. That was when I enrolled in a photography class and won my first award from the local paper that held a photography contest. My teacher told me at the end of the class that I had a real good eye which i thought was ironic since I was legally blind at the time!
Since the award I received from the paper wasn't such a big deal to my parents, I knew the teacher's praise wouldn't be either so I kept my love of photography to myself and continued to be in charge of the camera if we went anywhere, secretly using those moments to practice.

Fast forward 10 years or so, I had spent that time practicing on the animals at my sister's ranch, the children at our family's in-home day care and now I was having my own kids to take hundreds of pictures of. People were starting to notice I had a talent despite what my parents thought. I was told for years that it was something I should do for a living but I didn't think I was that good so I quit for a little while. I went to college the first time for a teacher assistant/sub degree and later for a systems analysis degree (computer programming). I also had many more surgeries and lost a few jobs because of it. I didn't really like those jobs anyway, the only thing I liked was taking pictures!

There was one photo though that changed my life. It was a picture I took of my daughter in her Easter dress when she was almost 3 in 1992 and a parent of one of the kids we had in our day care saw it. She said she really loved it and wanted to know if she could have a copy so I gave her one. I think about a week later I received a call from a man that owned a small photography business in town and he asked if I could be a "Second" at a family gathering he was doing a session at. I was about to say no when he said he would pay me $200 for the day. As a young, basically single mother of two toddlers, that was a lot of money so I agreed. I didn't find out until many years later that the parent who showed that man the picture was the man's sister!

Fast forward another...many years...I have since learned that with medical issues it's always good to have something you really enough doing. When I'm not feeling well and need to force myself to go outside, I grab my camera. When I need to cheer myself up, I grab my camera and find some kids or animals. I don't leave the house without my camera anymore, even my expensive one! In fact, it's a running joke in my house that my boyfriend does the run-down of things I need to grab: wallet, keys, camera! I can't even begin to tell you the moments I was glad that I had it with me!

Now I'm a little better at my craft and I have my own small business. I still find myself questioning whether I'm good enough to take a job but I will take the challenge. Animals and children are still my favorite things to photograph all these years later:

These are mine taken last summer. 

A client's daughter taken last fall

I have also had to convince myself I was good enough to take on other projects:

High definition resolution editing

Photo restoration of a friend's grandmother and uncle

I have only taken one photography class in my life and never took one for the last two. 

Now when I hear someone say "I can't do anything", I tell them if I can teach myself stuff, anyone can. I also taught myself how to crochet when I was 18, now I can make anything, like this:

I learned photography and crocheting all by myself. Now days people are lucky, they can watch tutorial videos on YouTube if they want to learn how to do just about anything, that's how I learned HDR and photo restorations.

In the words of Oprah, "Find something you like or that you're good at and run with it!". If you don't know what you're good at, ask a friend or family member what they think. Maybe it's baking cakes for special occasions or making jewelry for presents. Almost anything can be created and sold too! That flag sold for $145! Summer is almost here and you can find something to make a bunch of and take to an arts and crafts show around Christmas time to make money for gifts or just for some spending money! I have also learned over the years that something like crocheting is great to take my mind off any pain I may be having at the time..unless you're a perfectionist like me and rip out rows and rows of stitches just because I did ONE wrong! haha!!

Media views on Hydrocephalus:Gabrielle Giffords

Because my last post has gotten more views than any of my other posts than I've gotten since I started writing this blog 14 months ago, I’ve decided to continue writing about the same subject this week. If this is your first time reading I post on "Media views on Hydrocephalus" once in a while where I pick a celebrity or character that either has Hydrocephalus themselves, or they somehow were/are affected by it. It fits into the subject I picked out in the first place, because it's something that's usually not written about or at least not in detail.

Like last week's post (Roald Dahl) this post means something personally to me, other than the Hydrocephalus part. Gabrielle was the State rep in one of the three districts where I live. On the morning of January 8th, 2011 she was shot in the head by a gunman outside of a Safeway north of Tucson, during her first "Congress on Your Corner" gathering.19 others were shot, including 6 who died.

The results of her injury were a shattered skull and swelling of the brain. They left a hole in her skull for a few months after to allow the swelling to go down. At some point during those first few months, she developed Hydrocephalus. It's common for this to happen after any kind of brain injury that involves swelling of the brain, or a brain bleed. When they replaced the part of her missing skull, they placed a VP shunt for her Hydrocephalus. 

Unfortunately the for the most part Hydrocephalus and her shunt is left out when the media talks about her health problems. But it's been done many times before with other celebrities, and it won't be the last. But that's one of the reasons I've picked this topic in the first place. I hope that by posting about it, people will be able to find my blog when searching for public figures and that it will make people more aware of the condition. We can also try to reach out to these public figures, offer resources if they are needed and encourage them advocate others using their popularity.

I remember the morning this all started because I work in another local grocery store. It was during the last few months of being a courtesy clerk before I was promoted. So I spent most of that morning in the front end, and we didn't know rather they caught the gunman or not. So as least some of ourselves and kept on catching ourselves keeping a eye on the front doors, because we didn't know rather or not that the gunman would show up at our work too. All we know that she was shot at a Safeway, we didn't know until later what she was doing there so we thought that it all happened inside the store.

I also never thought that she would become a hero to the other people I've met with Hydrocephalus on Facebook. I knew about head injuries and Hydrocephalus, but I still didn't think that Gabby would have been diagnosed with it. Both before, but especially after the accident she did what she could for people with disabilities (including a job fair for people with disabilities). She resigned last year, but she still has the power to make a difference.

I don't know how much she knows about Brain Injury or Hydrocephalus, but I know she's strong enough and will be able to deal with it. I hope that you've learned something learned something new from reading this, and I encourage you to look into it more. Thanks for reading.

http://www.cnn.com/2011/HEALTH/05/19/giffords.surgery/index.html

http://www.kvoa.com/news/job-fair-to-focus-on-hiring-tucsonans-with-disabilities/