Howdy Hydrocephalus

Understanding my unique gyroscope

Smothered

6 Comments

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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6 thoughts on “Smothered

  1. That must be so frustrating, Kelly! Thanks for writing this blog, I am learning alot. Mason has an upcoming appointment to see Dr. Mehta, a Neurosurgeon here at the Stollery. I am interested to hear what he has to say.

    • Thanks so much Tara. Once I have my surgery, I was wondering if I could interview you and Mason so I can learn a bit about your journey. I am so glad that everything has been so positive. Mind over matter:)

  2. I would like to talk with you if that is at all possible. My son is 36 and was diagnosed in 2008. Nothing was done and no follow up. Not sure how we can connect, but email would be great.
    Kathy

    • Hi Kathy:
      Has you son experienced any symptoms? Some doctors just monitor until symptoms show up. My body compensated by putting a small hole in the bottom of the 3rd ventricle so CSF could drain. I guess it worked fine until it stopped working and I became a walking wreck. This didn’t happen all at once, but overtime unitl CSF was not flowing very well and symptoms came on quick. I am not a doctor, but we can connect via email: kboreson@shaw.ca

  3. Hi….I’m 32 weeks pregnant and my baby was diagnosed with aqeductnal stenosis hydro and basically said my child would be a vegetable. Your story gives me hope (: if u could email me I would love to talk with u! It will help calm my anxiety as well lol hope to hear from u soon

    • Sorry for not responding sooner, but I have been taking time off the computer to recover. Have you been in contact with a paediatric hydrocephalus specialist and neurosurgeon. I have heard of procedures done inutero. Fight to get the right help

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