Howdy Hydrocephalus

Understanding my unique gyroscope


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Relaxing

I think we lose how to rest and relax as adults.  Well at least I know that I have or maybe I just never learned how to turn everything off and relax.  I am used to doing many things at once and being very active.  I have never been one to really sleep in, even after a night out.  I don’t think that I am a 100% type A or 100% type B personality, but somewhere in between.  I just like keeping busy, trying new things and being active.

So today instead of feeling bad or how much of a slacker, or how out of shape I am getting when I am tired,  I made the decision to learn how to relax. I will be doing what I do best and researching the net for ideas.  Well the first site I went was a test on type A and type B personalities and was crap.  73 questions.  I think I did ten and decided the test results would be somewhere in the middle.  So the next site I looked at  to “How to Relax in 24 steps”  was interesting.  I’ll have to re-read to absorb more, but I know that I already practice some of the tips like avoiding toxic people.  Let the relaxation journey begin.  Now bring me a drink and a cabana boy!


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Super Powers

Copyright 2012 KB Photography

Growing up some of us wanted to know if we had super powers like flying or walking through walls.  Well I couldn’t fly – that is without a plane  or walk through walls – still trying that one (LOL) but I have discovered a super power that have developed from hydrocephalus.

This is not a super power, but can be part of the fashion sense of a hydrocephalus hero. For years, I have been sensitive to light where I generally wear sunglasses all the time.  No I am not trying to be the cool gal, but my eyes hurt during winter, cloudy days, foggy days and of course sunny days. The only sun glasses are that let in little light are the cycling style glasses which is great as I am usually an avid cyclist.

So my super power, a side effect of hydrocephalus, is having intensified hearing.  I am sensitive to sounds.  This has been going on years, where I  usually end up complaining that the TV, movie or radio is too loud.  Where I feel comfortable watching is where no one else can hear in my household, thus making me a crappy TV or movie partner.  The only movie theatre that I can enjoy in Medicine Hat is the Monarch Theatre where the sounds are not over the top.

However in the last nine months my hearing has gone into overdrive and although I mostly think it is  really cool, it can be overwhelming too.  There is noise around us all the time.  We generally just ignore the background noise and tune it out. However, background noise is no longer background to me.  It is like a kaleidoscope of cars, trains, people, birds, dogs, wind all swirling about.  It makes it hard to concentrate or sleep at night.

On most days I can deal with it, but on days when the pressure in my head is high, sounds like the zipper banging against the backpack you are carrying or the wheels of the trains down the hill, kids screaming or any renovation tool are beyond annoying and become painful.  I usually just pop some Advil or Tylenol to help alleviate pain. This past weekend, we escaped the renovation tool sounds, city sounds and television sounds went camping at Dinosaur Provincial Park.

It was nice, I relaxed and slept.  I even took pictures and enjoyed listening to the wind through leaves of poplar trees and prairie grasses.  Overall I am glad my hearing is intensified rather than losing it and missing out on all the sounds that surround our life.


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Laughter makes the house go round

Nothing makes a situation better than laughter. I have been trying to get a lot of laughter in my life. I try not to get angry or frustrated but it does seep through at times and the people who get the brunt are unfortunately family. I don’t go out much, but when I do it is usually for a few
hours where I can fake it quite well.
I am a master of disguise!
It has been amazing to see how the wonky my body has become. I have this intermittent speech thing where it can sound like stuttering, but I think it is my processor getting stuck on the words trying to come out. It occurs when someone has started a conversation and I have to answer questions or if I am stressed etc…. I can sound like a machine gun or a snake or a balloon letting out air. We laugh about it here. It really is quite funny and I should tape myself one of these days. Laughing helps bring down the stress of the situation and slows down the spastic speech.
I have been forgetting more and more where lists and Iphone are really not helping. The best incident that we laughed a lot was a missing can of paint. I painted our laundry nook and left a can a paint on the floor – or at least I thought I did. When we came back from Calgary, the damn paint was gone. We looked everywhere, in the garage, downstairs, upstairs, spare room (now temp kitchen), RV. Chris asked me if “I had put in one of the donate bags. We look – nope not there”. I swear gremlins took off with it. So we let it go. Two weeks later, I am going to go shopping and grab some re-usable bags from the hall closet. Inside was the can of paint. How the hell did that get in there…still do not have a clue. I laugh out loud and say that “this is the best dementia moment”.  I know that most of this will go away.  I am glad I can still laugh most the time.  Surreal experience that’s for sure.  Although I enjoy laughing at myself, and find it a great stress reducer,  I wouldn’t laugh at anyone else.  And if I don’t know you, don’t make fun at me, I might just bop you in the nose:)


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Snap

I don’t know why I snap.  Apparantly it is all I am really good at today.  I feel bad when I do.  I feel that I am failing as a parent.  So I am feeling pressure in my head and it hurts.  I mean my head always hurts, but you get used to it.  I guess I shouldn’t have lifted the sink and stuff myself, as it increased the pressure.  I know people offered to help but being a stubborn ass I, of course, declined any help.

The kids are hungry.  I told them I will get a loaf of bread from the freezer and will make them sandwiches once it thaws out.  A minute later – “I am hungry”.  I say “Soon, the loaf a bread is thawing out”.  This goes on and on every thirty seconds until I snap. I yell “Why can’t you listen.  I said the loaf of bread is thawing out…Jesus!”  Now my son has his head coverd and is cowering.  I immediately appologize.

So I am now hiding out upstairs away from them because they are annoying the shit out of me today and I can’t handle their screaming, yelling and behaviour in general.  I am sure they can’t handle mine either.  I think my kids are going to be messed up.


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Smothered

When I hear the word smothered, I tend to think of food – smothered onions, smothered pork, or smothered chicken and not brains.  When Hydrocephalus is present, the ventricles enlarge squishing the brains in your head.  For infants the skull is still soft and allows for the expansion, but for adults there is no leeway so your brains not only get squished, but also smothered.

When I was diagnosed a month ago, I was relieved to find an a word to describe what was happening to me.  I was also filled with compassion as I thought that I could related to people with brain injuries.  Duh – what a pretentious ass I was to think that.  When your brain cells get smothered, they die so Hydrocephalus is considered a brain injury.  When Hydrocephalus is treated early, there  can be minimal long term effects on your brain. However being a weird ass syndrome; it can be a crap shoot where one person may have physical or cognitive limitations and the next person is completely fine. The brain is a strange creature and still a mystery to many.

It get’s even more interesting when symptoms gradually appear over a long time because no one really knows what to expect after the surgery.  I have congenital hydrocephalus where I was born the pre-disposition for aqueductal stenosis where the pathway did not develop/developed improperly or narrowed over time of the flow of CSF between the third and fourth ventricles. This is called non-communicating or obstructive hydrocephalus where the lateral and third ventricles are considerable larger and the fourth ventricle is normal.  My body supposedly adapted to having a slow CSF absorption until December where my body decided enough was enough and now demands that I have help with CSF draining and absorption.  However, I did have a year 2003 & 2004 where my right side went numb and dizziness.  I was sent from Manning, Alberta to the MS clinic in Edmonton where the doctor couldn’t confirm if I had MS or vasculitus or some other affliction.  My GP in Manning, AB just said it was probably aura migraines without the pain.  Although I thought that was really weird – Who was I to argue with a Doctor, as I only know about trees and stuff.

At the Hydrocephalus clinic in Calgary, the Doctor gave me some testing.  researching on the internet, it is called Short Portable Mental Status Questionnaire.  I was asked what day of the week, where I was, my name, how old i was.  I was asked to draw a clock and put a time in it.  Super easy right.  then I had to read directions and follow a connect the dots pattern….this is where it gets messed up.  I was simple; I knew it was, but I had to say it out to follow then i messed it up, but caught it and corrected.  I was asked to memorize then recall a five minutes later/- crap I think i recalled 4/6. And of course I forget the rest of the testing. Although I did have some hiccups I thought i did okay.  I scored 23 or 24/30 and with my university education level puts me at a borderline mild cognitive impairment.

So where does that put me after the surgery…the Doctor’s could tell me that my physical symptoms would disappear, but can not guarantee how much improvement in my cognitive functioning will come back.  I sure in the hell hope that what ever is causing my machine gun word stuckiness speech will go away.  I can deal with anything else:)


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ultra sound – double edged sword

Ultrasound is a gift at letting you see your baby grow and progress during the pregnancy. Generally a parent-to-be is never concerned about the ultrasound because the pregnancy is normal. However, an ultrasound can also be a double-edged sword letting Doctor’s and parents know of potential concerns that most parents including me never even thought about.

To be told that your soon to be born child may have a potentially life threatening or debilitating issue can send parents into the black abyss of unknown and fear. It only takes a few moments of reading on parent discussion boards, Facebook pages to feel their fear and uncertainty of their future and the future of their families and soon to be born child.

Like a lot of news and televisions shows, the scary gloom and doom pitch is apparent on many of these sites. There are parents who tell their story of their children that have not survived and opted to terminate any male pregnancies after. There are plenty of stories sharing the severe mental and physical disabilities that their child has after they were born. This just adds more emotional fuel to the already tense situation. I don’t recommend reading any of the parent discussion boards or chat rooms, but instead turn to the medical sites or ask your team of medical professionals to provide information and answer your questions.

Basically there is no definite cause for Hydrocephalus but there is some hint that chromosomal and genetic abnormality that may be the cause use unless hydrocephalus developed due to a trauma or external factor such as an infection or spinal bifida.

I know that the first time I was told I had hydrocephalus, an image of a baby with a very head popped into my head. The large head or the rapid onset of a large head is definitely a tell tale sign of hydrocephalus in a newborn or infant.

There are two treatment options for newborns and infants: One is shunting where a tube is placed in the brain. This tube re-directs the CSF into the belly where it is re-absorbed. Endoscopic third ventriculostomy (ETV) can be done as well. Both have very good success at drain CSF and manage hydrocephalus. Babies can be shunted the day of birth or within a few days of being born. A child older than six months old may experience an ETV surgery instead.

Although the there is no cure, the treatment is early, it can be successful. A child may experience a large spectrum of motor or learning challenges but many children can show none of these challenges living a normal lifespan with normal intelligence. The only thing that is required with the treatment is the continued follow-up care to treat any infections, shunt blockages, ETV hole closure or shunt revisions.

The biggest thing is when you leave Children’s Hospital is to educate your GP and local hospital on the symptoms of infection and shunt malfunction. This is where you need to advocate for your child in an over protective parent way. If you suspect something is wrong – there most likely is something wrong.


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NPH – Normal Pressure Hydrocephalus

On my quest to find out more information about my condition, I have come to the conclusion that there is lots of info for children and older adults.   Normal Pressure Hydrocephalus or NPH it is commonly called, usually affects adults over 65 years old and can be from no known cause or developed secondary as a result of brain trauma (bleed, tumor, infection).  I was fascinated by how NPH can be easily misdiagnosed as  dementia,  Alzheimer’s disease, or Parkinson’s disease.  Approximately 5-15% of the patients with dementia have undiagnosed NPH.  Once treated for NPH their dementia often disappears and quality of life increases.

I haven’t watched Grey’s Anatomy for years, but I will have to watch season six episode eight because one of the cases is thought to have Alzheimers but instead has NPH.

TV Guide recaps season six, episode eight titled New History where

Izzie pops up at Seattle Grace, but reconciling with Alex is not on her mind. Instead, she begs Meredith to ask Derek to examine Dr. Singer, her high school biologist. Izzie crossed paths with him while staying with her mom in her hometown, and because he’s believed to have Alzheimer’s disease, he’s been removed from teaching and put in a nursing home. Izzie, however, believes he’s too young to have Alzheimer’s and believes he could have inter-cranial bleeding due to a fall.

Unfortunately, all of Derek’s tests come back negative, but because everything out Dr. Singer’s mouth is about Izzie at age 15, Derek assigns Dr. Percy to do a full dementia workup. Since Izzie partly blames being fired on Dr. Percy, she is less than thrilled to have him on the case. They argue about Alex and pretty much everything else, including Izzie’s demands that Dr. Percy do a spinal tap. He reluctantly does, but the results are also normal.

Suddenly, however, Dr. Singer is completely lucid. Because of the spinal tap, excess fluid that had been crowding Dr. Singer’s brain was relieved and restored his capabilities. Derek decides all that is needed is a permanent shunt.

During my Internet searches, I did find a closed facebook group called Adult Hydrocephalus that currently has 17 members.  There is a website attached to this group but it does not offer much information as the website is still being developed.  So far in this blogging journey I have met some great mother’s with children who may be pre-disposed to hydrocephalus due to their various neurological syndromes.  I will hope to share some of their experiences in the future.

If you have a parent, partner or friend who is over 65 and is showing signs of dementia, please have the doctors rule in or out hydrocephalus.  Adovcate for your friends and family and educate your doctors on the mimicing symptoms that NPH has to dementia.