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.

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)

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 

 

 

 

 

 

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) 

 

 

 

 

Epilepsy struggles (guest blog)

 My name is Keyt (Kate), I am 51 years old and I have had Epilepsy caused by Hydrocephalus since birth. Unless you are someone who has known me longer than 15 years you may not know this fact because I have been lucky enough to have found a drug cocktail that has stopped the seizures. However, it was a very long road to this point which included all kinds of medication trials, hospitalizations, various doctors and even comas and dying.

Like I said, my epilepsy was caused by Hydrocephalus. Because this is a hydro blog I won't go into too much detail except to say it's an overabundance of spinal fluid in the brain causing a swollen head and various other health problems, including seizures.

I began having seizures at 3 months old. My mom took me to numerous doctors but because infant neurology wasn't common in the late 60s/early 70s i was hospitalized often and placed on the few medications available at the time. 

By the time I reached 5 years old I had become so sick doctors said I would never be able to go to school. Finally at that age I was placed in C.S. Mott Children's Hospital in Ann Arbor, Michigan where, while in a coma I was finally diagnosed with Hydrocephalus.

School wasn't easy from kindergarten through graduation. Kids never understood me because if I wasn't having seizures I had major temper and behavioral problems because of the seizures or the high doses of medications I was on. Teachers tried to handle me but the older I got the harder to handle I became. Some thought i was just incorrigible and my parents were just making up this thing called hydrocephalus.

As an adult, seizures affected my life more than most people knew. I was still having breakthrough seizures (seizures despite being on medication) and by the time I was in my late 20s I gave up and stopped taking any meds at all. I began drinking a lot and acting out with every boyfriend I had. I didn't care what was happening with my life because once anyone heard the word epilepsy they would stop talking to me as much or just disappear.

In 2001 I was in a very bad car accident. I remember feeling as if I was about to pass out and while driving down a busy road with few open spaces, I ended up in a swamp. Witnesses say I traveled at least a mile and miraculously never hit a car or a house! Call it a miracle or a wake up call, or both, this was when I decided maybe medications were necessary. Since then I have been on Tegretol and Neurontin and ive only had 1 seizure. That one was because I had a kidney removed and couldn't take the doses I had been on. 

Epilepsy happens in many forms. Some people have reactions to light or extreme temperatures (I dated a guy once who would have full blown seizures up to 40 times a day if it was hot outside!), others can't handle quick movement like in cars or amusement park rides. Some people have full blown fall on the floor, twitching and drooling seizures, others stare off into nowhere for a while. 

Epileptic patients rarely talk about their condition even when it's very obvious. We want patience and understanding for our behavior because even if we aren't having seizures, epilepsy still has an affect and so do the medications we have to take for a lifetime. Seizures will seriously affect the brain, some more than others.  In my case I have a speech impediment and bad anxiety disorder. I know some people who can barely talk or walk at all.

As with any other disABILITY, most people would rather others asked them about their illness than be judged for it. I've had seizures at school, at family gatherings, with friends and various places in public. I don't mind answering questions as long as others are really interested.

Paraphrasing the Hydrocephalus Association's Teacher's Guide: Physical problems associated with hydrocephalus

 I've been paraphrasing the Hydrocephalus Association's teachers guide so I've gotten to the point where it's the first couple of sections, and information that's a lot more easily found online. So I'm going to keep things shorter, and not try to include as many details. 

 

The first part of the section covers that children with hydrocephalus usually have other medical conditions like Dandy Walker syndrome, spina bifida and cerebral palsy. Other ones that aren't listed that I know of is epilepsy and Chiari malformation. It also covers needing physical therapy and occupational therapy. The part that might not be as well-known is the hydrocephalus association recommending comprehensive development testing, and a neuro-psychological evaluation early on. 

 

I'm not sure how well known it is but CSF can cause vision damage that ranges from very mild vision problems to very severe vision damage, including being legally blind. Of course there's other causes of vision problems, and the HA isn't trying to say this is the only cause. It can also cause eye misalignment problems that can be fixed with surgery. From hearing about personal experiences, eye misalignment issues at very common with at least cerebral palsy as well. 

 

The next sub subject covers precocious puberty which can easily be found online, but I feel like it needs to be covered still. It might be caused by the brain anatomy associated with hydrocephalus affecting the pituitary gland. This is more likely with children that had brain trauma including brain tumors and meningitis.It can also cause behavior that isn't normal at a earlier age. The sections that I decided to skip is shunt revisions, headaches, seizures, and hand/eye coordination. I've covered hand/eye coordination in my blog before, and I plan on writing detailed posts about headaches soon, and I've had someone guest blog for me about barometric pressure headaches before as well. 

 

Next week I'll be covering the introduction to the teacher's guide, and general information. Then posting the links to each of my posts covering the sections. I still plan on writing regularly, but it will be less frequently because I need to do research, and breaks are necessary.

 

 

Source:  https://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

The guest blog about barometric pressure headaches: http://timothy-landry.blogspot.com/search/label/Weather

Paraphrasing the Hydrocephalus Association's Teacher Guide: Learning Disabilities (Part 3)

 The last two sub-sections are motor skills, and organizational skills. I'm going to keep both pretty limited, and then do more research,and post about the same subjects later on. I've posted about motor skills talking about my own personal skills during my first year of blogging which can be found by clicking on motor skills label at the end of the post. I've just recently started to figure out how to write about organizational skills in depth through mentoring, and I plan to work on that soon.

 

The three kinds of motor skills that tend to be effected with children with hydrocephalus is psycho-motor coordination, fine motor skills, and visual motor skills. According to the Teacher's Guide psycho-motor skills shows in clumsiness, and not being aware of how much space their body occupies.The guide was most specific with fine motor skills effecting writing but it also includes cutting with scissors, tracing, artwork, and participating in games. Children with hydrocephalus may have problems with printing and writing cursive. Their handwriting may be in poor quality and unevenly spaced. They may also write slowly compared to their peers. The hydrocephalus association encourages using computers for all writing assignments, but from experience that might not be financially available, and may cause their handwriting to be worse later on. With the visual motor skills section I'll have to do more research on it, and include it in another post because of my inability to understand what the Teacher's Guide means by everything. What I do understand is that it includes not being able to tell distance and direction. The distance part I've always assumed was poor depth perception because of my eyes. The direction part is another thing I want to research more about, and post later on. Another part of the poor visual motor skills is having trouble keeping in the lines when coloring, and finding their place on a page. Another thing they have problem with is spatial orientation which includes having problems telling the difference between left and right, over and under, and backward and forward. 

Children with hydrocephalus may have problems following with one step. The next paragraph mentions that may have trouble understanding the information as a whole, and finding the meaning of it. So the two things are most likely related. It may affect the neatness and quality of their work. It also means trying to understand every detail instead of the information of a whole which quickly turns into a information overload. According to the Teacher's Guide this may result in them using familiar habits or routines to cope which resembles misbehavior, inattentiveness, or laziness when it's really the opposite. 

I was diagnosed late, and a big part of what was affected was my motor skills being worse than what is considered to be normal. The only other person with hydrocephalus that I know that I could really compare this to has cerebral palsy, so it's really hard to tell how much of a difference it is. But with the part about telling the difference between left and right is something that is still a problem, at least when attempting to give directions. But when I was younger I couldn't tell the difference between my left and right shoes. 

Source: https://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

Also this a post I wrote the first time I was working on my job describing how I discovered my lack of sense of direction: https://timothy-landry.blogspot.com/2013/08/how-i-found-out-i-have-no-sense-of.html

Paraphrasing the Hydrocephalus Teacher's Guide: Learning Disabilites (Part 1)

 

I've been paraphrasing the Hydrocephalus Teacher's guide section by section. I was lacking motivation to do it after the first post, but I'm fairly confident that I'm ready to start posting every other week, or every week depending on my days off, or if I need a break. The next section I'm going to focus on is learning disabilities, and I'm going to be splitting it between multiple posts. I'll be focusing on mostly nonverbal learning disability. There a 4 different specific learning disabilities that's the most common. The first is Nonverbal learning Disability. The others are difficulties in understanding both complex and abstract concepts, and retrieving stored information. The last one is spatial/perceptual disorders, 

 

When children with hydrocephalus have learning disabilities it usually doesn't become apparent until the 3rd or 4th grade when the learning material becomes more complex and abstract. Children with hydrocephalus are likely to have learning disabilities involving processing information as well, and this also becomes more common around the 3rd or 4th grade as well. 

 

People with Nonverbal learning disability have problems processing nonverbal information. They struggle with learning new concepts, which definitely isn't limited to school work. It causes them to need to have the new concepts multiple times, and it takes them longer to pick up the pace if needed. Same with picking up social cues. Children with nonverbal learning disabilities tend to do well in early Elementary school with a few exceptions including fine motor skills. It becomes far more apparent later,  possibly as late as the beginning of Middle School when they are left to handle tasks on their own. The Teacher's Guide lists a lot of common things that happen at least during these years that may appear to be laziness, but isn't necessarily, These include not being prepared for class, missing assignments/homework, having trouble understanding texts, Social Studies specifically. Other common things are misunderstanding directions and their teachers and peers.  Again these behaviors may seem like bad behavior, but it's actually the result of child struggling. When it comes to verbal abilities usually have a easy time learning words and pronunciations, but have trouble understanding the meanings via text. 

 

Two other things that were mentioned was children with nonverbal learning disability often being in denial or their learning disabilities, or even their Parents. Also it mentioned that they are commonly anxious in public, and angry at home. 

 

Coming from my own experience I started falling behind in the 4th grade. I might have in the 3rd grade, but I had a great teacher who helped me a lot more than the last 2 teachers I had in Elementary School. I was failing almost all of my classes in the 6th grade mostly because of the sudden work load. I worked what I definitely felt was a lot harder that some of the kids in my friend circle, and ended up only getting C's. My biggest issue was not remember what I would read in my textbooks. Then retaining that information until I took my test, and needing to do the same thing again for the next text. So in a sense I gave up, and put very little effort into until my junior year. Somehow I managed to only be one semester behind, and half a credit from graduating on time.