My experience with missing hydrocephalus/shunt related symptoms as an adult.

I hit my valve hard in Janurary 2009, which had happened multiple times without any problems. Between my history of being fine after, and not having insurance at the time I didn't seek medical attention. I developed headaches soon after which varied when it comes to pain level, but got consistently really bad for a long time after. I had a CT Scan in June of that year which showed no signs of increased ventricles which I was able to pay for out of pocket. When my insurance from my job started at the end of the year I went to the ER. The scans came back the same, and I was referred to a neurologist. He gave me a diagonisis of TMJ, and it seemed that I couldn't get a refferal to my neurosurgeon. I had issues with my finances soon after including not always getting enough hours to have my health insurance through my job every month. When I was getting the health insurance. Between the two, and other issues I flkaed out for a while. I went back in 2013 after I was promoted at my job, and was able to get things in order. The scans including an MRI all came back looking normal. I was sent to a neurologist, and she tried multiple medications. It was mostly meds like low dose seizure meds that can also be used to treat headaches, because of not knowing for sure what the source was. She also tried botox, and the only time time that I noticed that it had been working was when I could tell it was wearing off months later. Between feeling like I was hitting a dead end, and having to deal with other issues I stopped going to appointments for what was supposed to be a short break in 2015. Due to finacial issues, and a lack of motivation I didn't go back until 2019. It started with more scans, and a couple other routine tests that I had done before. It ended with the same results, and no option to continue on at that point. I had a incident at work several months later that I was, and still am certain that it was shunt related. I went to my neurosurgeon, and got the same results. The scans were close to the same, but I was told that the previous neurologist had given me a referral to a neurologist with more experience that was right for me. From there I was referred to another neurosurgeon in the same office that the neurologist is at. After the routine scans, I was given a lumbar puncture which showed that the pressure of my cerebrospinal fluid was way higher than it was supposed. Since it's been confirmed that we found the source, I've been a lot more hopeful. I've had symptoms the whole time, some of which has gotten worse over time, the most noticiable one being dizziness. But since my scans looked normal, and I wasn't showing a lot of the major symptoms I wasn't able to start to get the needed help for over 10 years. Below is a link to my first post on this subject about having a similar experience as a baby. http://timothy-landry.blogspot.com/2022/06/my-experience-with-missing-major.html

Different types of hydrocephalus/shunt related headaches (Part 1)

 I was inspired to write this post a while back, and was re-inspired again a few months ago from a friend of mine who also has hydrocephalus, and has a lot of headaches that I didn't have at his age (he's a teenager). I haven't been putting much effort in getting the post time, because I've been able to spend time with him outside of our normal meeting spot this week, and it was very important that I focus on that instead during the summer. I was also planning on researching this topic more thoroughly, but I've decided to keep it more basic, and possibly go more into detail later. 

The first two is Over draining and Under draining headaches. It's seems to be commonly mistaken for meaning the opposite of what it is. Over drainage is when the shunt is draining more of the fluid that needed, and decreases in size, and may cause them to collapse over time. Which results in slit ventricle syndrome, which has the same symptoms as over drainage, but the diagnosis has to be a lot more specific. It also is most common in young adults who has been shunted since infancy. This might mean the same shunt for a long time, but I don't have a source for this. The symptoms for both resembles shunt malfunction symptoms but increases when standing, and decreases when laying down flat. From what I've heard this won't help immediately, it might be more like laying down for a nap. Just to be clear this is from the experiences from a couple people that I know, not something I found online. Underdraining headaches unlike Over draining headaches, will likely need to be fixed with a shunt revision because it's when the shunt isn't draining enough causing the ventricles to expand. It's symptoms are headaches increasing in frequency and severity. One of the symptoms is dizziness but the others are usual shunt malfunction symptoms. These are vomiting, and in older children increased irritability, poor school performance, and anti social behavior depending on the person. I also want to point out that this is all possible with adults of course, but there was a point where my source "Hydrocephalus Association" almost always focused of children, and not adults with hydrocephalus. But my source is also very resourceful,  and covers a lot in just the one article.\

Barometric headaches is going to have to require it's own post because of how resourceful I can make it. I'm going to write about it based on my experiences, and the experiences of my friends with hydrocephalus. I'm going to have do more research to explain exactly how it works. But barometric pressure can affect how someone's shunt works. This can include flying on a airplane, traveling to a different part of the State or Country where the sea level is higher, hiking, or more commonly when there's a change in barometric pressure when there's overcast or when it starts raining. People reactions to it usually differs too. For example having none to little reaction to it to severe headaches without any warning. There really isn't anything neurosurgeons can do about it either. The best thing you can do is take pain killers, make it through the day, and rest when you can. Feel free to ask me about my own experiences, but I try to avoid posting anything too personal regarding my health on my blog. The links on the bottom of my posts are ones that have been recommended to me. 

I should note that the source for dehydration headaches might not be as accurate as the one that I used from the hydrocephalus association, and I'm aware that people without or hydrocephalus gets dehydration headaches, but when I was researching for this post, I was told my multiple people that there's definitely a difference. The symptoms are headaches, fatigue, and change in mood. The questionable part is the article says that people with hydrocephalus should drink a lot more water, as in a glass an hour. This seemed questionable to me, and something like that should be recommended by a neurosurgeon instead. It wouldn't help that hydrocephalus and other disorders people with hydrocephalus also commonly have might cause them to not always get to the bathroom on time. 

 

Another type of hydrocephalus related headache that was mentioned to me was humidity headaches. I couldn't find much information on it, but one of the links of the bottom is by a blogger named Skye Waters talking about how heat impacts her hydrocephalus, and she includes more personal experiences in her comments. There's also malfunction headaches  but this at least should be known by anyone with a shunt, and there's plenty of information it online. 

 

The last one I'm going to mention on this post is headaches caused my scar tissue and corroding shunts which I need to research more. But both frequently is more common with older shunts, and has more to do with discomfort with the shunts than headaches. 

 

Let me know if there's anything I missed that should be added to my next post about the same subject. I'm also not saying that headaches are always shunt related, because that it definitely not true. But I wanted to help people understand that at the same time that there is a lot of things hydrocephalus or shunt related that can cause headaches. It doesn't always mean a malfunction, and it's also not "all in our heads".

 

Resource for over draining and under draining headaches 

Resource for dehydration headaches

 

Personal opinion for heat/humidity headaches 

Video by hydrocephalus association about barometric headaches (6:54)

Link dump for upcoming posts.

 https://www.hydroassoc.org/complications-of-shunt-systems/?fbclid=IwAR1DlnyI04d0Mgd8tgH6L1w36QZ0eRz6sXQmXxeGkNiwpoveyjvQ0TuPaKY (Shunts)

 

 https://www.hydroassoc.org/hydrocephalus-day-to-day/?fbclid=IwAR3LiG6oRkiJKDvDMcIsPO-NYtXPkB7enF13LVDERsiNCnUR2813wupyem0 (Headaches and barometric pressure)

 

 https://www.sensory-processing-disorder.com/an-adultand-a-recovering-spder.html?fbclid=IwAR3gcZazREgzP1EiOISFTFBS0v5a_WC_SJdj2JOKoMajVXrynTcgH-YNPSo (Sensory)

 

 https://shuntwhisperer.com/2017/10/16/me-and-the-barometer-2-0/?fbclid=IwAR3GSCM4shZj0xT9siGJAeuZEDjVNUh0SLCan9zxpN0fSeH-LUW9D3AtfGk (Barometric)

 

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4553745/?fbclid=IwAR2VwFEg9gPCWi16e36jcS78jiSej0KekK4mLH0jaS5ghPBSgvvJzVWsh-w (Calcification)

 

 https://www.theguardian.com/books/2016/sep/12/roald-dahl-medical-pioneer-stroke-hydrocephalus-measles-vaccination?fbclid=IwAR1nTgtVyiT5dFgX2W_49J3_QKm1KK5f3rxy30kVI7FgTahSMzQ7pwX50rA (Roald Dahl)

 

 https://www.wnycstudios.org/podcasts/radiolab/articles/248590-blanc (Looney Tunes)

 

 http://protomag.com/articles/roald-dahl-and-the-curious-shunt?fbclid=IwAR2rl-rVOqmFF0I8WLln8GTw4oWnUV45FTwv1CSU0JZohgg_ugy2lWiwvIs (Roald Dahl)

 

 https://dollecommunicationsblog.wordpress.com/2015/03/06/weather-app-helps-manage-barometric-pressure-related-migraine-headache/?fbclid=IwAR2TD5sQTT7JS7-_174EbqsAhKBYINXCsV7ehFC0gOMoR-Px271Np72QZyo (Barometric)

 

 

Paraphrasing the hydrocephalus association's teacher guide: introduction and links to each post.

 If this is the post first that you're seeing from this series of posts, I've been going through the hydrocephalus association teacher's guide, and paraphrasing each section. I've been doing it backwards because the information from it that isn't easily found online is at the end of the guide and in the middle of it. So it made sense to me to start at the end of it, and work my way to the beginning. Also my first post was written 5 months before the rest of it, because I quickly lost the motivation to do it. If you look through my posts from the last couple years of blogging before I took a long break, you'll see that this was a consistent problem. 

Since I skipped the introduction, I've decided to do that last, and skip all the information I've already covered. The main thing that was covered in the introduction, but wasn't in the rest of the sections was that children usually have traumatic childhood experiences revolving around surgeries, rehabilitation, and other experiences in hospitals. The only other thing that I find worth mention is that the hydrocephalus association mentioned that shunts are extremely durable, so very much not likely to break due to falls and bumps. They also recommend not stopping them from participating in physical education, sports, and activities. I'm mentioning this because I've seen parents in hydrocephalus groups on Facebook worry about their shunts breaking, and I want to try to put people's minds to ease. But at the same time I personally encourage parents to ask their child's neurosurgeon advice about this. The one exception to shunts breaking that I know of where they hadn't had the same shunt for decades was from someone who I don't speak to anymore because she made me uneasy enough that I couldn't trust her to be my Facebook friend after a while,

I personally never had any traumatic medical experiences in school, or during school. For me my experiences involved being diagnosed late, and having therapies that had to with extra physical challenges because of that. When it comes to sports I was advised not to play contact sports.Most other sports but I was normally pretty bad, and it wasn't worth making the effort to me to keep practicing, or even try.  

 Here are the links to each section in this series of posts:

 

Physical problems associated with hydrocephalus

Learning disabilities (nonverbal learning disability) 

Learning disabilities (math, memory, attention)

Learning disabilities (motor skills, organizational skills) 

Social problems (isolation, depression, anger)

Social problems (social cues, nvd) 

 

 

 

 

Hydrocephalus and sensitivity to noise

Edit: I've learned more about this subject recently, and I also started writing my blog again a few months ago, so I'll write more about it in March, and link it to this post. It turns out it's a sensory thing, and a disorder called sensory processing disorder is very common for people with hydrocephalus.

The link to the new post

.  According to the Spina Bifida Association there's no studies related to this specific topic, and I couldn't find much information outside of that site and a similar site. This is something that I sort of realized that was Hydrocephalus in at least Middle School, a few years before I started looking more into my condition (Hydrocephalus). It's not something that everyone with Hydrocephalus experience but it's common, and I've met many others online who have Hydrocephalus who deal with it. The sources I found refer to it as something people with shunts deal with, so it seems like it's something that has to do with the shunt specifically. Both sites that I found have to do with Spina Bifida instead of Hydrocephalus though. The two most common noises according to the sources I found are high pitched and loud noises. There is a range of reactions to noises that people can have, and for those that have seizures it can be a seizure trigger. There is no known treatment for those that have it as a side effect to Hydrocephalus but in general audiologists and ENT physicians can use a desensitization technique. Personally I've had sensitivity to high pitched noises since at least around the 4th or 5th grade and probably longer but I can't remember any specific situations having to do with it before that point. Except for being skittish I wasn't really sensitive to loud noises until I was an adult and now I'm sensitive to most noises. Especially with high pitched noises my reaction has always been anxiety, but in a way where it's not really noticed. Thanks for reading, I'm planning on writing about similar subjects or asking others to do it in the near future.

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8095331/k.983B/Hydrocephalus.htm

http://www.sbhi.ie/wp-content/uploads/2014/02/The-Effects-of-Hydrocephalus.pdf

(Guest blog by Mikayla) Weather and shunts

Tim!
(Thank you for this opportunity.)

In regards to the shunt putting up a fight when the  weather changes, its plain and simple, your shunt is going to give you grief at one point or another no matter what the weather is doing.

I myself find that when it is really hot I have the most trouble and I tend to get reasonably troublesome headaches, I have also found that really cold temperatures bring on some pretty nasty headaches as well.

I can't really speak for anyone, I can't tell anyone what the weather may or may not do... I can however, and with pride might I add, say that no one is alone with this, maybe under other circumstances you are, but hydrocephalus is something we can work through together, and the weather, be it; rain, sun, snow or hail, can't stop us in our journey to be unique in a way that only few understand.
Regards,
Mikayla

Noise sensitivity

I'm going to keep it short. I don't remember when I first became aware of being more sensitive to noises but I knew I was in Junior high. At the start at one of the school years we were each given a assignment organizer with a plastic cover, or a similar material. When we got them a lot of the other kids scratched them to make a similar noise to fingernails on a chalk board. I could barely stand it, but I at least don't remember showing it. With the assignment organizers it also reminded me of how hard it was for me (and still is) to stick to a routine. I associated both with Hydrocephalus, but I wasn't sure how exactly. Sticking to a routine has to do with Nonverbal learning disability but the noise sensitivity might have something to do with the shunt itself. It's common with people with Hydrocephalus but there are many who don't have that problem. The most known noises that are more of a problem is high pitched noises and sudden loud noises. People react to it differently, with some the reaction has to do with the shunt itself. Some get headaches, but others get anxiety like I do. It may go away after childhood, but not with everyone. Thanks for reading.

 http://www.sbhi.ie/images/The-effects.pdf

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

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

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/

Media views on Hydrocephalus: Roald and Theo Dahl

This is my third "media views on Hydrocephalus" post. It fits well into the original subject that I had chosen for my blog, and my previous posts on the subject are the ones that are most often searched for on Google, according to my blog stats. I have a number of people I've been planning on writing about, and someone had searched for something similar and ended up reading at least one of my posts this week. So if it's searched again, I want this post to be seen. Hopefully it's exactly what someone is looking for.

Roald Dahl was an author more commonly known as a Children's author, but he also wrote adult fiction and non-fiction, screenplays, short stories and also wrote for television. Some of his children's books included James and the Giant Peach, Charlie and the Chocolate Factory, and Matilda. Some of the screenplays he wrote Chitty Chitty Bang Bang. Some television shows he worked on includes Way Out, which was similar to Twilight Zone and several Alfred Hitchcock movies.

Dahl was married to Patricia Neal, he had five children. In December 1960, his middle child and only son Theo's son's baby carriage was struck by a taxi. This resulted in him developing Hydrocephalus. At the time there were shunts available for treatment, but it was a very new technology. At the time the shunts had a much higher failure rate than it does today (and currently half of all shunts fail during the first two years).It also had a higher chance of resulting brain damage if they not replaced right away.

In Theo's case his shunt had blocked six times in nine months. Each time he would go temporally blind and they were never sure that his vision would come back after each revision, or how much brain damage had been done. 

This inspired Dahl to develop a new shunt other than the Holter shunt that had been used for a few years at the time, and was the first successful shunt. During the next couple years with the help of Toy Creator, Stanley Wade he would succeed in the development of a new shunt. The main differences between his and the previous shunt was that the shunt wouldn't touch the brain during the placement reducing the risk of cerebral debris getting in and steel discs, which gave the shunt a wider area to drain the fluid.

By the time the shunt was Developed Theo no longer needed a shunt, but for the next couple years after (1962-1964) Dahl's shunt was used in two to three thousand children worldwide. This was Dahl's first major influence in medicine, but not his last. After his daughter died from measles encephalitis, he became an advocate for immunization. Then after Patricia Neal had a series of strokes, he created his own rehab treatment to help her recover.

I've been looking forward to writing about Dahl and his son more than authors, because of my childhood interest in him that in a way continues on into today. My third grade teacher had us read many of his books, At least six of his them that I can remember. We watched at least a few of the movies that was based on his books as well, and then I saw another in the theaters when it came out the year after I was in his class (James and the Giant Peach). I knew very little about Dahl himself at the time, but it's interesting to me now that the author that wrote all those books helped developed a medical device that has kept me alive the whole time. Thanks for reading; I plan on writing more "media views on Hydrocephalus" posts in the near future. But I'll be including some others and more guest blogs from my friend Keyt.

http://en.wikipedia.org/wiki/Roald_Dahl

http://www.telegraph.co.uk/culture/books/biographyandmemoirreviews/7930233/Roald-Dahls-darkest-hour.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029661/

this week..

This week 25 years ago,I was recently diagnosed with hydrocephalus and was having my shunt placed.I was diagnosed at 17 months and my parents were told multiple times that I didn't have it because of my lack of symptoms.A volunteer nurse ended up diagnosing me,and refereed us to a neurosurgeon.At the time my parents were told that I would probably need a revision every 2 or 3 years,and that it that my shunt *will* malfunction within about a 10 year period of time.He said if it didn't happen that it would mean that my hydrocephalus would have fixed itself and my shunt would have malfunctioned but I wouldn't have needed it anyway at that point.I made it past the 10 year point and this week I've had the same shunt for a quarter century.

I've found out since that both of those statements were wrong.50% of shunts malfunction or become infected within the first two years,so I had about twice the chance of my shunt malfunctioning as what they told us.70% of shunts malfunction within the first 10 years so although the risk is higher it's not impossible for it to keep on working.Also I know for a fact that my shunt still works because of a couple CT scans from a few years ago.At the point my shunt was working the same way it was 14 years earlier when I had my last CT scan done. I've had few problems with it until a few years ago,and the only time I really remembered thought of it was when I had to turn down playing contact sports as a kid.

I understand how blessed I am,and I doubt that it will be many more years before I need to finally get it replaced.No matter what happens in the future,I'll always be thankful for a "pain free" childhood and a normal life for several years out of high school.Thanks for reading..

importance of brain trauma awareness/research

One of the main reasons I started my blog in the first place is to write about my experiences on how hydrocephalus has effected me,more than in childhood than recently.Unlike many others I've had the same shunt since I was first diagnosed as a toddler,so most of what I write about is about dealing my with brain injury and everything that came along with it.When I say that I have a brain injury you may think that it means I was in some kind of accident.For me and many others,it's actually something I was born with or acquired soon after.I have mine because of hydrocephalus,which is a build up of spinal fluid in the skull and brain.I have a shunt,which is a tube and valve that  drains the fluid.The shunt causes some problems as well,but the neuro disorder and the brain surgery that was done to help control it has effected me too.You can't poke at someone's brain and not have long term side effects,no matter the age.Even if the person hasn't developed skills yet doesn't mean they won't have problems with them when the time comes.It also effects each person in different ways,so not every case in the same.Below  is a few links,and thanks for reading :)

This is a link to a earlier post of mine that describes some of my personal experiences

  http://timothy-landry.blogspot.com/2012/01/neurological-side-effects-of-brain.html

the  next link is for a great source to anyone living  with a brain injury

 http://www.braininjuryforum.com/

the last is one of many hydrocephalus sources,but this one gives you the option of finding people in your area.

http://gabrielslife.org/

limitations including career paths

Sorry I haven't been writing on a certain during lately,but I have been making it a point to write during the start of the week or at least before Thursday.Also I had a problem coming up for the my topic this week.Lately I've been thinking about career paths or other activities that I wouldn't be able to do simply because I have a neurological condition and more than I have a medical device in me.I don't know if this post will help others as much as like others posts during the last few months though.But it's been brought up on hydrocephalus groups on Facebook somewhat and it's something that I've personally thought about once in a while.

I don't know if I've mentioned it on here or not,but growing up I knew very little about hydrocephalus.Actually the only thing I knew about it except for my shunt and knowing that I'll probably need to have it replaced at some point was my limitations.I knew that I couldn't play contact sports,and I knew that I wouldn't be able to join the military.By knowing my limitations I'm talking about everything that I had to work harder on and fall behind me on when it seemed to be so easy for everyone else.The everyday limitations didn't always make me think of my condition though.But when I had to turn down every playground game that what a contact sport it did make me think of it,and it was lonely having to sit out on games.Thankfully my elementary school P.E teacher only planned things that I could be a part of,and the few times that I couldn't she made it a option for the whole class so I wouldn't feel left out.I didn't think about it much until I started to hear other people's experiences with P.E,but I'm grateful for what she did for me.

I knew that I couldn't join the military for as long as I can remember,and it didn't really bother me until high school.Either though I still think about not having career paths that I knew I'll never be able to do with physical contact,and one that I never thought about that I'll never be able to do which isn't usually something that's realistic anyway is being a astronaut.Not only would there would be a danger when it comes to the physical training,but being in space would most likely mess up my shunt.Not only would the pressure be a problem,but my shunt relies on gravity,and there's none in space.None of these options would really be realistic options except for the military,with or without my shunt so it doesn't bother me.

What does bother me is the career paths I can have now that I may not be able to do in the future.I'm not saying that it will happen,but with the condition I have there's always that chance that my condition will become more severe and there might be things I can do that I won't be able in the future.I'm not going to talk much about the career options that I won't be able to do because it's something I haven't put much thought into and most of it hopefully is things I won't need to consider doing for a living.However hopefully I do write about it can be used as a example or other career paths too.I currently work in the produce department for a division of Kroger.You might not think about it when you think about a produce department in a grocery store,but my job involves a lot of heavy lifting.Most of the boxes fruit come in tends to be heavy and it's not uncommon for apple boxes,melon boxes etc etc to be about 50 pounds.When/if I need a revision it's going to mean that I won't be able to work in Produce,or at least not the normal way because it would be months before I could do heavy lifting,if ever.So at some point Produce might be a option,and though I'll miss it there are other career paths in the grocery business.What would be a problem if there's ever a day where I lose my job in the grocery business and have to go back to working in restaurants like before.In that industry there is little that wouldn't have to do with heavy lifting,cashier/host only.

There are also jobs where we/I could do that wouldn't  be a rise choice because hospital stays and recovery wouldn't be a option.Personally that job for me is retail management.It wouldn't be a risk to my shunt,and if I tried hard enough I can do it.But it's a problem when someone in that position calls in sick at all,let alone suddenly be on leave.These our usually jobs that we can't do because of safety reasons,and these are jobs that we could be offered.But it wouldn't exactly be always wise to have them.This is just my opinion,and I know there may be people who don't agree with me.


I know at least some people see the limitations of career choices as discrimination to us,but it's really not.It's for our safety,and I'm neurosurgeons would agree with the military,professional sport leagues,and NASA to not hire us for these jobs.It's discrimination when it's a job that we could do physical that they would't hire us for just because we have a disability,and some of those jobs just aren't worth fighting for.Thanks for reading :)

history of hydrocephalus treatment and a hope for the future

I've tried to make it a point to write at least once a week,so I apologize for not writing in during the last couple weeks.

Although there really hasn't been much improvement in treatment in the last sixty years for hydrocephalus there has been some.Other than in the eighties there has been some development in shunts since when they first came out with them.The main reason that it took until then is because they couldn't determine what was causing it exactly because they didn't have the technology  to find out.Then they didn't have the technology to find out someone has hydrocephalus before they were born until decades later.The first treatment they tried for hydrocephalus was ventricular punctures,and it didn't work because he thought that it had to do with the outside of the brain rather than inside it.In ancient greece they attempted to treat hydrocephalus by wrapping bark around the person's head and in trephined holes.Several other treatments were tried to during the last couple centuries before shunt technology.Many were not successful due to lack of knowledge on what hydrocephalus,but some were close to knowing what the cause and wasn't successful for other reasons.One interesting treatment had to do with leeches,because a 19th century doctor thought that hydrocephalus was a inflammatory disease/condition.


The main two people who invented the first and still current shunt valve were actually not doctors.One was a toolmaker and the other is a famous children's author.They both were fathers of a son who developed hydrocephalus in childhood,and they both had the determination and the knowledge to make something that would not only save their sons lives.The inventor of the shunt valve is John Holter.His son Charles was born with severe spina bifida and after meningitis he developed hydrocephalus.This was 1950 and at the time the hospital they went to had developed a shunt but they didn't have a valve for it.After a failed attempt which resulted in the death of a young boy,he made the first shunt.Although it didn't save his son the shunt is still in use today.His model is the "Spitz-Holter" shunt.

With the first development in shunt technology was partially made by a engineer and a neurosurgeon the person who decided to make it and also had a huge part in developing the shunt itself was Roald Dahl.If you don't know who he is,he's a children author who wrote books who would later be turned into popular movies like Charlie and the chocolate factory.Although shunt problems are common and the need for revisions is far more likely than they should be,it use to be alot worse.After Dahl's son's carriage was hit by a taxi he developed hydrocephalus.Back before he created his valve shunts would jam more often and be more likely to cause brain damage and blindness than it does now.He ended up inventing the valve system that's still in use and at least at the time metal discs were invloved.His valve is no longer in use and his son didn't need a shunt anymore by the time he finished it,but it did save or at least made life easier for several thousand children.Kind of off subject but Roal Dahl was one of my favorite authors as a kid,and still is.I think it's pretty cool that he has a part in why I was alive and well at that point in the first place.

There was developments for shunt technology in the decades to follow nothing really worth mentioning.In 1997/1998 the programmable shunt was developed and released.The purpose of it is so that not every problem doesn't have to involve surgery and a new shunt.Instead the person's neurosurgeon can change the setting.The prolem is that even though that it makes that part of a person's life the programmable is likely to cause other problems,and just isn't worth it.Personally because of not having any revisions yet and having a shunt about about a decade older than the first programmables I can't talk about it from personal experience.

The newest known developed is endoscopic third ventriculostomy.It involves making a small hole in the third ventricle of the brain so having a shunt isn't needed.Although it was used pre-shunt for several decades and it was successful and replaced by shunts.It's more effective now but it still fails,and only a small amount of people are able to have it done.I already know without needing to ask a neurosurgeon that I'm not one of them.

There has been small improvements in recent years but nothing that's really well known or at least known to be effective.There is hope though,before 30 years there was no foundations for hydrocephalus so other than what was funded by the government which has never been much.Now more than ever with foundations,and social media with have more of a chance to raise money or just awareness.There working on new developments rather or not we hear about it alot.The way we're going there's hope for a cure,thanks for reading :)

http://www.medscape.com/viewarticle/405733

http://en.wikipedia.org/wiki/John_Holter

http://en.wikipedia.org/wiki/Wade-Dahl-Till_valve

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

introduction

I've had a interest in writing since the third grade.I remember the teacher who got me interested,and how he did it too.When I entered that grade I was always trying to get out of it by writing in ridiculously large letters.But a project having to do with the children's book "wayside school is falling down" changed that for me.He had us each write a short story about our fellow classmates.After until I finished high school I liked to write short stories.Some were for classes but most were for my fellow classmates.After high school that all stopped,and I don't remember why.Before Myspace wen't downhill I would blog on there but that stopped a few years ago.Yesterday a good friend told me that he had seen what I've written on facebook lately and that I have wasted talent.He encouraged me to use it,and to write a book.I'm not ready to go far since it's something I haven't done much of in years but I am taking his advice.I've decided to start this blog and to start taking gen ed classes to get a journalism degree no matter how I'm physically doing at that point.

I knew I wasn't going to have a problem trying to think of something to write about,that's never been a problem.I just thought I was gonna think of a topic I could write about.I knew I wanted to write about my neurological condition because it's became a passion for me since I'm stuck living with and there's no cure for it,only treatment.I also know that I don't know alot about,and there are already blogs about that topic.Instead I've decided to write about how it's effected my life in almost every way.

I have Hydrocephalus,it's either something I was born with or developed as a new born.Even with the severe lack of of motor skills and almost constant high pitched screaming there was a least a couple who over and over told my parents that there was "nothing wrong me".Thankfully at 17 months a volunteer nurse at a clinic for poor families told us that I have it and refered us to a neurosurgeon,and then one of the doctors still told my parents I didn't have it.I may have problems that I may or may not have had if I would have been diagnosed but I would have been in deep trouble if I wouldn't have been diagnosed at that point.

Hydrocephalus is a build up of spinal fluid on the brain,normally the fluid is drained normally but with someone Hydrocephalus that doesn't happen.Instead a shunt is usually placed to drain it.A shunt is a silicon tube and valve that drains the fluid,it's either a "non-programmable" like mine where it's just placed and you can't make any changes but with programmables a setting is set depending on conditions that stop it from draining as fast.50% of shunts fail within the first 2 years and for some people there childhood becomes a "merry go round" of surgeries and hospital stays.For me this didn't happen and mine hasn't malfunctioned yet after 24 years..Just because that hasn't been a normal part of my life and headaches hadn't been up until the last couple years doesn't mean I have struggled.Having Hydrocephalus or a brain injury in general has caused me to struggle daily,and for a long time I was "fighting alone".There's alot of stuff my neurosurgeon didn't tell my parents,and that's something that's very common.This blog is to help people understand how it's effected me,to help others dealing with the same thing and to help me get my writing to the point where I'll be able to write a book.Thanks for reading :)

-Timothy Landry