Guest blog (Berkley's life story)

Hi, my name is Berkley, I'm 18 years old, and I'm from Ontario, Canada. So, I was born with hydrocephalus, which is caused by an accumulation of fluid in the ventricles of the brain. I have a shunt that drains this excess fluid from the ventricles to my abdomen where it can be absorbed properly. I have had 21 brain surgeries, and 27 all together because of it. 15 of those surgeries have been in the last 3 and a half years. Before I was even one year old, I had 9 shunt malfunctions until a second shunt was placed. I was fine from my first birthday to around my 15th birthday. I had shunt tube lengthening when I was 9 and ended up having emergency surgery because I was playing soccer at school and was pushed into the ground. This caused my stomach incision to come open. In October of 2010, because I had been feeling nauseous in the morning since about July of that year, I went into the clinic to have a shunt series, and a CT scan done. In November, I went back to review the results with my neurosurgeon. She then informed me that the shunt tubing was disconnected at my neck, so I had surgery the next week to reattach it. My shunt tubing was worn on both sides (I had 2 shunts at the time) so my neurosurgeon decided to take out the tubing on both sides and replace it with new tubing. 

In the months following, I developed symptoms of chest pain when I was breathing deeply, a constant headache, abdominal pain, and shunt pain. In March of 2011, I went into emerg with pain in my side. They suspected appendicitis so they took my appendix out. On April fools day of 2011, a constant headache started. A few weeks later it hadn't let up so my mom took me into emerg again and they admitted me to do some tests. They did a shuntogram (basically a spinal tap in the shunt rather than the spinal column) and a couple of days later, they put an ICP (intracranial pressure) monitor in my brain so they could monitor the pressure in my head. Right when I came out of the operating room, my neurosurgeon found out that I had a shunt infection. She finished the monitoring and then gave me the options I had for treatment, and I opted for the surgery over 2 months of IV antibiotics. I was absolutely terrified because this was a surgery I had never had done before, and I didn't know what to expect because they'd have to drain the fluid outside of me into collection bags. I was expecting something completely different from what it was actually like. 

They put the drains in, and gave me heavy doses of IV penicillin over 13 days. When it came time to put my shunts back in once the infection cleared, my neurosurgeon decided that she was only going to put one shunt back, remember, I had issues when I was a baby until they put the second shunt in, then I was fine until all of this. A few days after they put the shunt back in they discovered that the tubing was balled up in the wrong place in my stomach so they had to go back in and fix it. I was discharged the next day.

 Over the next few months I had developed more symptoms; dizziness when standing, nausea, the headache and a bunch of other things I had with the infection were still there. I had been admitted over the summer a few times for observation, and a different neurosurgeon finally decided to try a VP programmable shunt. They didn't believe it would make a difference, but they still put it in, and did another ICP monitoring at the same time. This all happened to be on my 16th birthday. In the months following that, I still had the dizziness, constant headache, now shunt pain, and trouble sleeping with the new shunt. I went to see a different neurosurgeon in November of 2011 who did nothing for me, and said that my headache would go away once my body got used to the new programmable shunt I had placed. I had been on multiple different medications to help with the headache and nothing touched it, and still doesn't. 

In January of 2012 they did another ICP monitoring because I developed papilledema (swelling of the nerve in the back of the eye). It is also a sign of increased pressure in the brain. The numbers were fine (typical for me) so they still have no idea what is wrong or what they can do to fix me.  

Since the pressure monitoring, I had still been dealing with these medical issues. I was sent to a new neurosurgeon in December of 2012, who, in the beginning, was unsure of what to do for me. He originally thought of once again doing an ICP monitoring due to the fact that he's at a different hospital from my original surgeon, and wanted to see readings on his own equipment. After this appointment, we did not hear from him for more than 6 months. When we finally did in July of 2013, it was because of the fact that the headache had become even worse. I was admitted the same day, and had an MRI the next morning. My neurosurgeon, upon reviewing the results and comparing them to past CT's and MRI's, realized that my ventricles were slightly larger than at times when I was well. Although there was very little change, he decided to go with this idea, and opted to do exploratory shunt surgery. Through doing this surgery, he discovered that my shunt was blocked, and had likely been since shortly after it was placed in August of 2011. He replaced the component of the shunt that was blocked, and I was sent home a couple of days later.

After this surgery, once I had healed a little bit and the pain from the surgery was gone (about a week later), I realized that my headache was no longer there, I was so happy! Life felt like it was beginning to go back to the way everything was before all of this started. On August 4th (A day after my 18th birthday), the headache returned. I went back to the hospital the next day, and had another MRI done. This came back with very clear results, showing that my ventricle that did not have a shunt placed in it anymore, had blown up to be almost 2 cm in diameter. This made diagnosis very easy, and led to another surgeon who was working while my original surgeon was on vacation, to decide on placing a second shunt back into this ventricle. It was successful, and my ventricle went down in size right away. After the surgery, my headache was still there. My neurosurgeon was once again unsure of what to do for me, as I had my second shunt back, and my ventricles had shown to still be very small (slit-like at the time) based on MRI's I was having done monthly since the second surgery that summer.

The incision from the surgery in July had never healed properly, so on January 21^st of this year, I went in to have an incision revision done to reclose it. After this was done, I was sent home on antibiotics. When I was in the OR, a shunt tap was done. A couple of days later, we got a call from my neurosurgeon who told us that my shunts were infected, along with the area around where the incision that never healed was. They asked us to come back that same day to re-do the shunt tap to make sure it wasn’t just a contaminant that interfered with the culture results. The next day, we received another call from my neurosurgeon because the results had already come back with a fast-growing bacterium. I was told to come back to the hospital the next day (January 31^st) for emergency surgery to have external drains placed. I had a PICC line placed on February 3^rd, and was put on vancomycin and meropenem to treat all of the 3 infections that I had (2 in the shunts, and 1 in the incision). The meropenem was stopped a couple weeks later because they didn’t think that it was helping with anything, but I was kept on vancomycin for 6 weeks.

On February 12^th, I had the ETV (Endoscopic Third Ventriculostomy) procedure done in hopes of not requiring a shunt once the infections had cleared up. It basically involves burrowing a hole into the floor of the third ventricle to allow fluid to flow through it, and this theoretically allows for the CSF (cerebrospinal fluid; the fluid that protects the brain and spinal cord) to absorb within the brain like it would in a normal person. After this surgery, I ended up with aseptic meningitis (blood in the CSF), which is extremely painful. I was on steroids for a couple of days, and was left to let the blood clear from the CSF on its own, which was not a pleasant process. Over the next couple of weeks, my drains were clamped and unclamped a few times to see if my body could handle absorbing CSF the way a normal, non-shunted persons body does. Even when the drain was open, I leaked CSF from the drain insertion site. I had to have extra stitches put in, and this didn’t seem to fix the problem. We were told that when this happens, the only real solution is to have a shunt put back in. So, on February 27^th, when Infectious Disease had finally cleared me, I was booked in to have a new shunt placed. This time, it was going to be just a regular fixed pressure VP valve (this is what I had up until my 16^th birthday), rather than a programmable. After the shunt was placed, I was unable to sit or stand without getting sick, and had severe neck and shoulder pain. They figure that it was caused by there being a lot of swelling and blood along the shunt tract due to a reaction from where the shunt was placed, as I had never had a shunt in this ventricle before. The only relief I had from this pain came when I was lying completely flat. I was sent home on March 1^st on PICC line antibiotics. A week later I returned to the hospital still in as much pain as I was before I was discharged. They did an MRI, shunt series (x-ray along the path of the shunt tubing), abdominal ultrasound, and shunt tap. These all came back to be normal, so I was sent home after consulting with the pain team who told us to try a muscle relaxant, which didn’t help with the pain at all. I had to lay flat as much as possible for just under 3 weeks before the pain finally subsided enough for me to function.

I have now been transferred to an adult neurosurgeon here in my city, and am waiting to see him still. I'm hoping that with this new surgeon, something will finally be figured out, and that my headache will go away.

 My Life With Hydrocephalus: Berkley

What I wish I would have known about Hydrocephalus as a kid (part 2)

This is the second part of a post that I wrote several months ago, and intended to finish a lot sooner or not at all. Part of the reason why I'm writing a second part to it now is so that I could refer to it later on instead of writing a post that will end up being several pages long. The link below is the first part.

http://timothy-landry.blogspot.com/2013/07/what-i-wish-i-would-have-known-about.html

If you're someone I've known for more than 5 years you its most likely to never have known that I have Hydrocephalus. It was someone that my teachers knew about but wasn't spoken about unless it was somehow brought up or on a need to know basis. Especially at church, I'm not sure who was told about and who wasn't. I assume that more of my caregivers were told about it when I was younger and my speech was still pretty limited. I only started to tell people about it when my actual started to become a problem in 2009. I started talking to other people with Hydrocephalus on Facebook at the same time, and everyday challenges with Hydrocephalus were brought up early on and it sparked a interest. It wasn't until then that it's normal for people with Hydrocephalus to have the same problems learning as me.

My source is the Hydrocephalus Association's teacher's guide's third section which explains a lot of the problems I had in school and church, most of them I didn't think of having to do with Hydrocephalus. The first couple of things that I could really relate to in the guide have to do specifically with Nonverbal learning disability. It mentions that problems seem to become more noticeable around junior high and children (and of course adults) with Hydrocephalus or just nonverbal learning disability tend to have problems with math. I did start to really struggle during the last couple years of elementary more than before, and it got worse during the transition from Elementary to junior high. With math I had a few setbacks but I did pretty well until high school Algebra. I ended up graduating high school without ever actually passing Algebra or Geometry. They would have me take a lower math class and I would do great, but when I would try Algebra I bomb and fail the class every time.

Something else that's mentioned in the guide is Fine motor skills, which I'm sure which a problem was because how big of a problem it was outside of school but it's something that was easier to deal with in school than anything else. It's something that's mistaken less for a lack of effort, and it's something that I always knew had to do with Hydrocephalus. I remember it being a bigger problem at church specifically for the mid-week Boy Scout type programs for elementary school aged kids. During the first couple years it just meant that I had to ask someone to help me cut paper for projects, but later on when the projects were more about learning to tie different knots and building birdhouses I knew that I wouldn't be able to handle it. I was getting really frustrated a few weeks in and the amount of issues I had with fine motor skills was beyond just asking for help once in a while. The one specific experience having to do with fine motor skills that I have to do with school is when they had all the students tie a ribbon to a fence to make some sort of design or to spell something. I got anxious knowing that I wasn't able to and ended up having to admit that I couldn't do when I was questioned about it by a staff member and watch her tie it for me in front of my peers. It also mentions handwriting which I got a lot of help with from a teacher in elementary but it's something I still have some problems with especially if the paper I'm using doesn't have lines. It's eligible though and usually when I have to write a lot it's done on a computer.

The first thing that comes to mind in the visual motor skills section is finding my place in a book which was a problem then and still ends up being a problem once in a while in the workplace. It's also probably what caused me to not be able to space things out very well when I had to draw.

The next part of the section is organizational skills which automatically think of struggling to make and break habits, which would result and still does end up resulting in things not being done either because I would constantly forget to do something day after day or because of letting things, specifically assignments in school get organized. The few times I tried to use a organizer to write down my assignments it would last a few days but as soon as it was something that wasn't strictly in forced I would begin to forget about it which pretty much killed the purpose of having it in the first place. I would also consistently not use folders and toss stuff into my backpack which would result in a black whole effect and by the time I would find it again it would be crumpled up or not even in one piece. I think this is one of the major things that would have helped a lot if it was known about. It was the major reason why I was kept in special education classes. I don't know if it could have been handled differently, but if it could have it sure would have helped. The section also mentions not being able to follow a set of instructions which definitely was and still is a problem, especially if it was verbal instructions as a group. I would get stuck on something and get a few steps behind and not be able to complete the assignment.

Memory was something that was clearly a problem very early on at church when each of the kids would be asked to memorize a verse and they would erase one word at a time. I would always be the last to remember and be able to recite it. It was frustrating especially in front of everyone else but it meant a lot to me that the group leader wouldn't give up until I got it or get noticeable frustrated with me. It became a problem in junior high when I couldn't answer questions or recite something right after I read something in a text book or essay. It continued to be a problem in all through school but it was so frustrating my first year that I didn't put much effort into it and get by with really low grades and ending up not finishing high school on time. It's something that's even more frustrating in church small groups which have made me try to avoid anything where small groups are part of it.

The last section I'm going to mention is attention problems. There are a few sections that I've skipped but this is a long enough post without them, so I just picked the ones I could personally relate the most to. If you're interested I encourage you to check out the guide or even just that specific section. Struggling with attention ended up resulting almost has to go on Ritalin and being misdiagnosed with attention deficit disorder. This and memory effected my school performance too more than other things, and if it was possible it would have really helped getting more help in these two areas.

Thanks for reading, I hope that I've hope you understand me, yourself or whoever you may know that has Hydrocephalus or nonverbal learning disability. I hope that I've helped someone get something out of this, and make things easier for you. I'm going to write more about this subject in the next couple of months and my next post will be the one that is going to refer to this one. Below is a few links to Hydrocephalus foundations and the teacher guide I've been referring to and also a sample of my handwriting that I sent to a friend.


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

http://www.hydroassoc.org/

Pediatric Hydrocephalus Foundation--> http://www.hydrocephaluskids.org/wordpress/

This is a sample of my handwriting that I sent to a friend. I decided to make my handwriting more creative to entertain a couple of teachers in the process of doing my work. It worked and it's something that stuck, but ended up getting more sloppy over the years. Notice how the spacing is off? The size of the letters is kind of too but that's the main thing a teacher in Elementary school helped me with.

Connection between childhood bullying and social anxiety as a adult

I'm going to try to start posting every third week instead of every other week for a while. If that doesn't work well either I'll take a break from writing again. I've made commitments that has to do with Hydrocephalus and social media, I intend on keeping them but other than that I'll like to try to start thinking on the condition less even if dealing with headaches, the way people see me and my speech impediment makes it pretty hard not to. This post has to do with the way people see me, or at least the way that I think people see me.

I can't remember when I started having social anxiety, but I know I had it when the physical bullying stopped close to the end of the 4th grade. I get noticeably anxious in a way, where especially I'm in a group of people that I don't know well that I do what I can to avoid socializing. It also makes me paranoid of what people think of me, and usually gives me the impression that people are picking on me or making fun of me when they're not. If they are it makes me overreact often. Anxiety problems in general has also had an effect on my sleep. I realize that a lot of people have problems sleeping because of anxiety but it's something that's been a constant with me since at least high school a decade ago.

I thought that it was caused directly by Hydrocephalus until about the last year or so. I found on talking a few others and sharing experiences with each other, most of them people that I've met online because of Hydrocephalus but not all of them. I've heard about anxiety disorders, especially Post traumatic stress disorder being the most common, but most of the time it had to do with domestic violence and experiences in the military overseas. I didn't consider it being really traumatic until thinking about my past more recently. It was a pretty constant thing during the school year, and off and on I was being physically hurt during the experiences. Unless something happens or someone says that really reminds me of something that happened I've blocked out in my mind too.

Thanks for reading, this is something that has been bothering me a lot often and I needed to get it out rather or not it was time to write a post. I've got some ideas that I've meaning to work on, but most of my posts are probably going to be more ranting than anything in the near future.

Media views on Hydrocephalus: Miracle in Lane 2

This blog along with several others that I've done is about well-known people with Hydrocephalus or shows or movies that have focused on it. I've written about most of the well-known people that have Hydrocephalus that I know of. Now I want to focus on shows and movies which involve more research, which is why I haven't written about this topic in a while.

I'm focusing on a made for TV movie this week that originally aired and used to be played frequently on the Disney channel. The movie originally aired when I was in the 8th grade (2000). At the time I didn't know anyone else with Hydrocephalus. I discovered the Hydrocephalus and talked to a few people from a Hydrocephalus e-mail group but I wouldn't meet anyone in person or really connect with anybody with it online for almost a decade. Also at the time my only surgery was when my shunt was placed at 16 months, and rarely had headaches. Currently I've been having headaches and migraines on a daily basis but for now I'm revision free still. I had and still have other problems that have to do with my Hydrocephalus but not the childhood brain surgeries that most kids with Hydrocephalus experience. I realized that on average normally people with Hydrocephalus would have to have a shunt revision every 2 or 3 years, so I knew that in that way I was different than the main character in the movie and most people with Hydrocephalus. It's also why I avoided talking about Hydrocephalus with others because I felt like I was a poser because of the lack of surgeries I've had. What changed that ended up being the first person I met on Facebook who had part of his experiences with Hydrocephalus on his profile. He's about 25 years older than I am and only has had a few surgeries since childhood and his current shunt is about the same age as mine. I met a lot of others with Hydrocephalus through him within a pretty short period of time, and the first few were within the next couple of days. Another of those few people was someone who has become one of my closest friends out of all the people I've met online, had a revision free childhood and had his first surgery when he was a adult a year or two before I met him.

The movie is a true story about a kid living with Hydrocephalus and Spina bifida named Justin Yoder. The movie is about how was inspired to become a boxcar racer and win. His family fought a rule that you could only use a foot brake and not a hand brake. Even if I didn't had to deal with surgeries or being in a wheelchair there was parts of the movie I could relate in one way or another. It didn't matter much to me because neither of my siblings played sports, but contact sports was the one thing that I was told not to do so I wouldn't get hurt and ending up damaging my shunt, so I would have to sit out a lot of the time. When it came to his family talking about his surgeries, the struggle to play medical bills and also his revision during the movie I could relate to it because I knew that it could happen to me without warning too even if it's something I never experienced. Our finances were usually tight growing up, so that made the thought of the possible emergency surgery more stressful.

There's a link to a site where you can stream the movie online. It does ask you to download a movie player but the movie should play without needing to download anything. Thanks for reading :)



http://putlocker.bz/watch-miracle-in-lane-2-online-free-putlocker.html