Participating in a Special Ed Track Meet against my will (in 5th grade).

Before I start I have no medical problems other than hydrocephalus. The last 14 years has worn me out, mostly having to deal with the problems with my shunt. When I was in Elementary especially later on I had trouble running because of my ankles, dealt with my speech impediment, and motor skills. Special Ed classes didn't start until Middle School, and it made me normal enough because of the other kids in the class. We would have a feeder school track meet for Elementary Schools going into the High Schools in the district. They went through the process of finding the fastest kids in each participating class in each grade. I didn't expect to not come in last. I didn't question it when I was called into the office to be given a shirt the day of the track meet, and was sent along with everyone else. I wasn't told at all what was going on until I was called to run with kids from other Elementary Schools that actually had severe physical/developmental disorders. We all got a blue ribbon after, my main it just as far a the closest trash can. I had no choice than go through with it, and get out of the view of the other students as fast as I could. This changed the way I see myself immediately. People are way more likely to jump to assumpations about me as an adult than when I was a kid. I'll post again if I find a way to deal with it, other than complaining whenever someone makes themseleves obvious. Purposely getting away from certain people has been the best option so far, but not always possible. One thing I didn't mention at first. My Parents weren't notified at all, and my Dad was pissed. My Teacher that year went out of his way to have my back, and the Principal did too. They would have found out last minute without being able to get me out of the situation.

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

My experience with missing major hydrocephalus symptoms as an infant.

 My shunt was placed when I was 16 months old. But I was showing symptoms long before that, possibly as early as when I was born. But it only became obvious that something was wrong with me when I missed multiple milestones. My major symptoms were missing milestones that involved having to pulling myself up. I was eventually hitting them, but it was a very slow process. My other major noticeable high pitched screaming. But I was either missing the majority of the others, or they wasn't noticeable enough for my Parents to get a referral to a neurosurgeon. What got me my referral was a nurse at a free clinic noticing me. She showed up to my Parent's apartment did head measurements, and got me a referral to my childhood neurosurgeon. It all happened so quick that my Parents didn't realize what was going on in time to thank her. My developmental delays that I had as a infant immediately got better. I had other delays that I still struggle with, but most of them got way better with different therapies as a child. Most of them are normal with people with hydrocephalus, or other neurological disorders. But there are two that my parents were told directly involved my late diagnosis. Those two are my speech impediment, and my hand tremors. I couldn't speak until I started speech therapy in Preschool. It slowly got better, but it got to the point in high school where being pulled out of class was a bigger issue than not getting the last few years of speech therapy I would have gotten before finishing high school. My hand tremors started around the time I started puberty, and hasn't stopped since then. My current neurosurgeon told me that it's not necessarily because I was diagnosed late, but it may have been caused at that age because of certain hydrocephalus symptoms coming back, or starting later on in life. I'll talk about both more in future posts. I'm hoping to write another post this week, about my experience with a lack of shunt malfunction symptoms this week.

Barometric pressure headaches (hydrocephalus)

There's a lot of blog posts about the barometric pressure headaches, and the connection it has to hydrocephalus that are either pretty long, or hard to understand so I'm going to try to avoid both. 

There are two studies that I've found online that explains this problem. The first explains in scientific terms the exact point barometric pressure gets high enough that it effects ICP (intracranial pressure). The second one explains that the cerebrum either increases in size or decreases in size depending on the weather including stormy weather, but also when it comes to temperature or humidity. To be more specific the rest of the brain stays the same size, but the cerebrum changes sizes. In stormy weather, the heat, and when it's humid the size increases. But in cold weather it decreases. So if your barometric pressure headaches are worse in the summer than the winter, this might explain why. Also I live in Arizona where it normally doesn't get too cold. So between that and other desert weather patterns. I would like to eventually like to visit a colder State in the Fall to see how much more of a difference it makes when it comes to my headaches. 

I also found a source while researching for this post explaining that barometric pressure issues might just be lethargy, which I've experienced far longer than the headaches itself. I noticed it as a teenager because of my age, but probably dealt with it during stormy weather long before that. My headaches started when I was 22. and I've definitely made up for not really having them in childhood during the last 12 years. Lethargy is of course is the minimum for barometric pressure headaches. The other end is headaches that so bad that you can't get out of bed when you might normally have a very high pain tolerance.

Sources are below, and I'm including more of a experience that a guest blogger wrote for me years ago. 

https://pubmed.ncbi.nlm.nih.gov/33839865/

https://healthnewshub.org/new-research-weather-changes-brain-size-affecting-physical-psychiatric-conditions/

 

 https://waltersdegree.blogspot.com/2017/09/did-you-know-some-interesting.html?m=1

 

http://timothy-landry.blogspot.com/2015/04/guest-blog-by-mikayla-weather-and-shunts.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)

Alien Ant Farm's Dryden Mitchell's spinal injury

This is one of several posts where I'm going a little off subject. I've done it some before but definitely plan on doing it more often in the near future as I run out of ideas. I figure that considering the condition I normally write about there are probably people who will see this with spinal injuries, or at least spinal related birth defects. I really started to like Alien Ant Farm when they peaked when I was High School, and liked them even more when I got their album Anthology. Between Anthology and their next album Truant they were in a bus accident in Spain when they crashed into a semi that was pulled over on the side of the road. The driver Christopher Holland was killed in the accident, and caused serious injuries to the lead singer Dryden and the band's head of security, David Zajic. David suffered a fractured skull and Dryden fractured his C2 vertebrae which was made worse by the way he loaded into the ambulance. The injury caused him temporary paralysis, but could have easily caused permanent paralysis by the injury itself , or how the way he was moved right after. In a article several months later, Dryden said that the long term affects of his injury that was still a problem at the time was a lot of nerve damage and not being able to feel his finger tips. In a recent interview, he mentions the nerve damage again but not the numbness in his finger tips. He started to perform again soon after little by little and they released their next album a little over a year later.

The links below are my main sources and include that I left out, partially because I wrote this post and did all my research on different days and based it off what I could remember. The first video is a recent interview and includes Dryden talking about the bus accident and also their new album that came out this year. The first music video is their most popular singer, and a song that may be the only Alien Ant Farm song they've heard. The song is a cover of Michael Jackson's "Smooth Criminal". The second music video is their song "Glow" is from their album Truant and one of the first music videos after the accident. The third music video is "Movies" which is on the same album as Smooth Criminal, and it received minor airplay on at least MTV when it was released. The Fourth music video is "Let Em Know" from their most fifth album Always and Forever.

I wrote this blog post 6 years ago, and ended up not posting it until now. I'm trying to get back into the habit of writing my blog frequently. and decided that finishing this blog post would be a good choice, forgetting that I had finished it, and never posted. I added an extra link with more information about his recovery. I also want to add that I saw AAF at the Pima County Fair 5 years ago. I couldn't afford to go see them at their peak, and missed them my first chance or two after their hiatus ended.

http://www.mtv.com/bands/a/alien_ant_farm/news_feature_030710/

http://www.billboard.com/articles/news/75599/alien-ant-farm-recovering-after-bus-accident


http://www.mtv.com/news/1455168/alien-ant-farm-singer-still-recovering-from-bus-accident/

http://www.thefader.com/2002/09/25/dryden-mitchell-of-alien-ant-farm-slowly-making-his-way-back-after-crash

 

New link:

 

https://www.nzherald.co.nz/lifestyle/alien-ant-farm-starting-small-again/UOS67WFUXEJQYC6WOP6W26S62M/ 

Neurological disorders and sensory issues.

 I've been meaning to post about sensory issues since before I started writing my blog again last year. I was going to wait until I was able to research it a lot more, but I changed the way I decide to post about a recently, and a post that I wrote about noise sensitivity has been viewed frequently since I started paying attention to my blog stats again. Also this is important, I'm going to be mentioning sensory processing disorder in this post. It's possible to have sensory processing or sensory issues in general without having the disorder. I do not try to diagnose people with stuff, but it's also a thing that usually doesn't get a official diagnosis a lot. I'm going to mention two other people in my post. One is a minor, and the other is unable to give permission to rather she would want her first name included, and it would be quite a while before she's able to.

Sensory processing issues in common with both hydrocephalus, and cerebral palsy. Just from what I've been told it sounds like it's common with other neurological disorders too, but I'll rather have someone else write about that later on, so they can at least include personal experience. I'm including hydrocephalus because both me and a kid I'm mentoring has it, and my mentee has cerebral palsy. With hydrocephalus it's common because of the pressure build up on the somatosensory/sensory cortex. With Cerebral Palsy it has to do with the injury to the brain.

Basically when you have Sensory processing issues some or all of senses go haywire. This isn't limited to the 5 main senses either. It might include things like spatial orientation, or sense of balance. For me the big things are noise sensitivity, and not liking to be touch, or be crowded. With my mentee, it's different things but I don't want to go into detail yet without his permission or the permission of his Parents. But I have a friend with cerebral palsy that's a little older than me that had some of the exact sensory issues as my mentee. I wasn't aware of the connection until I was looking up some things I noticed about him that I at least thought was "tics" and found info online for SPD.  

My friend that isn't available to give permission for me to use her name, was given a official SPD diagnosis when she was in the 10th grade, so when she was around the 15 or 16. She spent some time in DES/CPS custody, and has been told that she would have been diagnosed earlier if it wasn't for that. She found out through special education testing. The advice she gave me was to look the kid eye to eye, explain things to him like he was younger than he is, and tell him one thing at a time so he process everything if I have multiple things to explain. My friend's main things are noises and crowds. With her it's more loud noises, but with me it's just certain noises especially scratching noises, or a bunch of people talking all at one time. She also mentioned being triggered by words or things. But I'm going to include that in another post when I've done more research, and I have two days off in a row to write a post. 

 

Hydrocephalus (sensation and perception) 

A little more information about hydrocephalus and sensory issues 

 Cerebral Palsy and sensory processing issues

Adult experience with SPD (hydrocephalus) 

Previous posts about noise sensitivity