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!

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.

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:)

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.

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:)

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.

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.

Hear Me Roar

I have had some great feedback about my last post. I would like to clarify a few things. I understand that our local healthcare professionals are doing the best that they can. I have generally been so happy with the care my son, W, has received everytime we have to make an appearance at the local ER because his asthma decides to act up. I just feel that I fell through the cracks and it frustrates me to no end.
I am still a little angry because from the first CT scan where the doctor’s in the ER noticed my enlarged ventricles and said to me “looks like you have had them from birth. It is your sinuses causing you issues”. I went into the ER three times because during physical activity I had massive headaches then a trickle of fluid from my nose. Once again the Doctors said “It was your sinuses”. I questioned if it could be CSF. The response was “No. Without a head injury CSF will not drain outside your body”. No one once looked to see if it was intercranial hypertension where CSF can drain from your nose.

I waited politely for four months to see a local neurologist whos says that “most likely the issues are sinuses but you do have enlarged venticles so I will refer you to the Hydrocephalus clinic, but I really think it is your sinuses”. Then I saw the ENT and he saw me and his diagnosis was “there is nothing wrong with your sinuses. The symptoms you are experiencing are neurological”.  Dilema – am I going crazing of having some sort of crisis.  I am turning 40 this year.

Since everyone, my GP, Neurologist, and ENT say everything is fine I decide to do the MHC Rattler Run.  I know I can easily do the 3km so I sign up.  On the day of the race there is snow on the ground.  I decide to wear more than what I normally would because it is only 3km that I will be running.  So I am running and almost done when I can’t feel below my right knee.  My right side of my face goes further number rather than just a small patch, it is almost the entire right side.  I come in third and have to wait for medals.  I am kinda in a daze.  I am scared to go to the ER because of my previous encounters so I go to walk-in.  The doctor does an assessment – I have my eyes closed & and I fall to the right.  WTF what alien took my body. He tells me if symptoms get worse go to the ER.

I book an appt. with my GP.  I tell him “I do not want another CT as I have over 800 days of extra radiation in the last six months.  The same scans are not telling you anything”.  He says “I will be waiting for months for an MRI”.  I end up saying “that I will go to Calgary and pay for one”.  So I went to Calgary two days later and had a head & neck MRI.   Yay no stroke or cartoid separation and yes enlarge ventricles.  I send the images to the Hydrocephalus clinic and we get a call in June booking us an appt for when I am on vacation.  With a little re-scheduling I get in July 25.

So the running caused a lot of pressure that created my gait to get worse quicker.  My right sided weakness and tingling can also be symptoms as well made worse because of the run.  So for the moment I am not allowed to run.  I can do some activities as long as the pressure doesn’t get too great on the head.  It is up to my discretion to set my own limits.  I find this hard to do as I am a person who always pushed herself.

So I may sound like a cranky bear, but really I am just letting it go by venting.  So breath, move forward and all is good!

No it is not an STD

What a whirlwind ride the last nine months have been…similar to being pregnant but not quite. Instead of a baby, I get an answer. I feel triumphant because the symptoms I have been feeling have been acknowledged and thus categorized in the doctors world with a diagnosis of Hydrocephalus or Hydro for short.
All those Doctors in the ER can suck it…no I was not faking and no it was not anxiety and no it was not depression and no it was not fucking migraines. I am not stupid, I saw all the eye rolls facial expressions that I was wasting taxpayers money every time I came in. I know that NaCl is saline so I really commend you on getting to the root of the problem (insert sarcasm) but instead opt out to treat my “imaginary symptoms.”
I always said I was fine even though I wasn’t and then left because I was frustrated with your lack of concern, lack of listening skills & were wasting my time.
My GP told me that I should go to the ER when get weird symptoms & ER docs kept telling me to go to my GP.
The nurses & doctors should remember that there are only thin curtains between the rooms, their common areas and computers. Man did I hear some great stories of their staff parties, other patients and just general BS (lots of BS that was usually about other patients & not very nice).
Enough about the rant about our floundering medical system….so what the hell is hydrocephalus. No it is not the STD syphilis or related to syphilis in any way. It usually found in newborns and elderly. It can also become a part of your life due to a head injury, tumor, or infection. Or there is a small popluation that are diagnosed as young adults (nope) or middle age (yup). We are called SHYMA population and we are rare. We have either acquired Hydro at birth and adapted or genetic factors have allowed for aqueductal stenosis to occur (narrowing then closure of CSF flow). I have always known I was special but hell not this special.
In laymans terms hydro really is just water on the brain. But it really is not water but a clear liquid called cerebrospinal fluid or CSF. CSF acts like oil in an engine. It brings in nutrients for brain healthy & takes out the waste. It acts as a cushion to our brain and spine. The difference between oil in and engine & CSF in your body continues to make 500ml a day within the four ventricles of the brain and it circulates then is re-absorbed into the body. However, if there is a blockage or where re-absorbsion is impeded, your body still continues to make CSF but it has no where to go. The four ventricles begin to compensate for the fluid and begin to expand similar to a balloon being blown up inside another balloon. Because the ventricles are ballooning, the rest of your brain becomes squished and starts acting funky.
Symptoms that I have experienced are pressure in head, headaches, decreased memory, confusion, word finding, numbers, dementia like symptoms, forgetting tasks, can not multi-task, trouble walking, balance, weakness right side, anger, irritability, blurry vision, urinary urgency, insomnia then really tired during day (duh!), depth perception changes, balance, dull, loss of me including interests & generally just feeling like I am drunk.
I know as a parent with two kidlets, who doesn’t want to feel like their drunk at times, but believe me it wears on you really quickly. It takes you ten times longer to process information, understand conversation and read. I have to have the thesaurus up so I can figure out what word I am trying to type. I need someone to look at me when they talk so I can understand what they are saying otherwise I hear only the peanuts teacher. I am trying to write this and the kids are with me at home…thus they are getting into all sorts of stuff I will have to clean up because I can’t do two things at once. I have been tested and show signs of mental decline.
If hydro is left untreated it will further squish your head creating further brain damage and the pressure will increase that will eventually cause death.
So my options are to do nothing or have surgery. And…surgery wins!