Howdy Hydrocephalus

Understanding my unique gyroscope


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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 

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6 Comments

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:)