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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Neurosurgeon says ETV a success

Last week I went and saw my neurosurgeon. I had a scan done in January of my brain. He confirmed that the ETV hole has good CSF flow and everything looked awesome. He then gave me an MMSE or mini-mental state exam.

He has administered the test three times to me. The first time I scored 24, second 6 months later 25 and 26 just last week. Basically this test is usually used to figure out cognitive impairment overtime with patients with dementia. The test does not incorporate your education level so that has to be adjusted when scoring. My neurosurgeon indicated that prior to surgery I showed signs of mild cognitive impairment…no shit Sherlock. I forgot how to read a map, where the hospital was located, how to do my job…that was scary! It was so frightening to see things slip away, but by the time my surgery, I so impaired that I showed no rational fear about surgery or risks. Since surgery I have thankfully shown progress and now considered not to have cognitive impairment in his eyes or so he lets on!
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The test was easier for me on some parts and challenging on others. The second time I took this test, I had trouble counting back by sevens from 100 that the doc asked if I was trying and I got all teary-eyed. This time I did better and I was impressed with myself. I also 3 out of 5 objects without prompt at end of test. With prompt, I am got one more item. I had trouble when drawing my clock. I couldn’t remember which way the hands went. I was supposed to do 1610 but think if came out like 1320 instead. I even admitted that I couldn’t remember where the hands where to go.

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The funny thing is that people often say that my neurogenic stutter is gone. True the brain is healing and the speech therapist tips, tricks and strategies have helped me considerably but the darn stutter reared it’s ugly head showed up again during the counting backwards part of the test. I think the stutter shows itself, not because I am nervous, or anxious but when my brain is working hard trying to get those connections firing again. I have had so many tests like the MMSE and more intense neuro psych testing, there is no reason to be nervous. I get amazed where I have improved now rather than mouthing hanging wide open…wondering what happened to me.

I admit that I have made large strides and that it is somewhat surreal for me still when I have more than one good day in a row. It is now up to two or three good days in a row (with proper resting and time management) and then I have a bad day and go “oh yeah…this shit again” This TBI/ABI recovery is like a clinger….just won’t let go no matter how hard you try to flick it.

This journey amazes and frustrates me every day. I am so grateful to advocate on behalf of myself more. I understand, interact and communicate more easily. The world that I live in is no longer like being continually drunk or on a spinning amusement park ride. I have the attention span to watch most of a movie or tv show. My memory has improved I have also learned strategies to help with organization, planning and memory. I still need to use those techniques on a daily to basis because if I let them slide, I will become anxious, freeze and not get anything done because I can’t figure out priorities or tasks to do on the fly. I become obsessed over ideas,things and projects and forget about all the other things that I need to do in my routine. I will forget the most basic things but will remember the oddest most inconsequential shit. Chris always shakes his head at me like I am a savant…then we laugh. These are just executive functions of the brain. They will also get better with time too! That’s it time…that seems to go painfully slow with my recovery but yet so fast with other parts of my life.


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The Call

Yesterday I got a call from a Dr. He phone to touch base with me because he has a conflict in appts. and most likely will not be at my appt. on monday. However, his assistant will be there administering my tests. He then asked me what school I applied for. I told him I hadn’t applied to anything yet. I told him I didn’t know what I want or was capable or suitable for me to do.

He asked if I wanted to attend Medicine Hat College? I said that prior to and during my dementia phase I taught at the college for one semester. I said I had been accepted into a Master of Science program at Royal Roads. I told him that due to a lot of factors I can no longer perform in my old profession as I had once had. He said he reviewed my first neuropsych.

I told him I was looking at online Recreation therapy assistant program, art therapy program or masters of counselling or graphic design. But I am not too sure if I could pass any if I took the courses.

I told him that I could write more freely now. That my typing speed made it easy for my fingers to get the words out without thinking too hard. Not like it used to be when writing (excluding bad days…avoid puter then). That my pain meds made my hand work better. That my eyes could take computer longer.

IMG_1223.GIFI told him that I could read books…lots of books…understand the words. BUT and a big but was that I have a hard time understanding context and following story. Subcontext and underlying meaning…forget it. Just like I have a hard time understanding sarcasm and jokes these days, the higher part of thinking is what I am having trouble with. The critical thinking, analysis and all that jazz.

I told him that I wasn’t wanting to waste money if really there was no way I could improve. I need help in improving what was once so easy for me. I was use to be able to draw inferences and bring together ideas for an arugment easy. Now I read stuff and go WTF.

So after what seemed like 30 minutes of talking on the phone (it was probably less than 10) I hung up with a follow up telephone call appt. the 23.

Tomorrow night, hubby and I head to Calgary for my appt on Monday. The first starts at 9:00am. The second appt of the joyous botox shots at 1300 and if I need more tests, I finish the day with those. Boo Yah…getting to getting the call and hopefully more answers to re-work this unique brain of mine


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A glitch

IMG_4780So I have been doing this elimination diet in hopes to find new energy for my beyond endless fatigue, bad skin, and motility problems. So I enter into the second week all good. Thinking that the first week wasn’t too bad. I didn’t have any cravings and my skin appeared to look better.  My constantly runny nose and sludge going down the back of my throat has stopped! Well the motility problems went from a complete standstill (since having SJS even motility prescriptions/nor fibre have helped) to “hey – I am here and don’t ignore me or I will teach you a lesson” type of quickness. Crap – I mean literally crap and plenty of it too! Plus the added walking and farting phenomena too. I don’t even know the last time I farted. Everyone would make fun of me because I could never fart, but heck even a smell of a carbonated drink or water and I was burping louder than a 300lb man! Here I was hoping energy; however, I was extremely tired…three hour naps, full nights sleep (other than the endless bathroom trips from 9:30pm-12:00am), sleeping in an extra 15 minutes….snooze, snore, snooze and maybe a snort here or there – this was me a walking zombie wearing a toque because I hadn’t showered and my hair only wanted to stand up straight. Instead I got poop! And then in the second week, my skin begins to crap out too!

I accidently have wheat & dairy in something and say to “hell with it” and have a beer as well as I glitched and didn’t read a label correctly. So that night in bed I start to cough as I feel sludge going down my throat…yuck the runny nose thing had started again.

The next day I start all over again and begin again.  It is not a failure but just a glitch in my embracing a new way of eating. Absolute change can not happen overnight.

I wrote that eight days ago. Today I began week three. I won’t begin to introduce some foods just yet as I know that dairy, gluten and nightshade veggies trigger me.

four days ago I got a hold of my physiatrist and we decided to tirate down on propranol as it may be a big factor in causing the lethargic, fatigue, dizziness and just plain yucky feelings. I already have relatively low-normal blood pressure under 110/70 and the meds lower your blood pressure further. I tried this med when I first came out of hospital and found it very horrible, but my Dr. wanted to try it again. I responded better by not having my vision go black and almost passing out all the time.  I am down to three pills twice a day and I have a bit more energy, but I did sleep in today and I also had a nap too!  We will keep playing by ear. I still don’t think it is the right med for me. However, it has made sleeping through the night easier.

Here’s to hopefully moving a head instead of backwards.


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To Dream a little dream

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For the first time in a month I had energy yesterday. For the first time since before Christmas I left the house. I left the house for 1 hour on December 24 to delivery some small surprises to a couple of friends. Other than that I had been in the home since December 20th and hadn’t left. I was tired, sore and had to keep my energy saved to make it through Christmas. Not only did I survive Christmas, I actually enjoyed it. I actually sort of paced myself. I did a lot of sleep and vegging after. I have not watch so much TV as I did the three days after Christmas as I have in years.

I survived the last really bad flare from SJS. It affected my body with hives, mouth & lip peeling and blisters on my face. I also had swelling in my face and my eye was in pain and very dry. But the worst was that I experienced internal bleeding that had me very concerned. I went to emerg and they couldn’t do anything but told me to make an appt. with my GP. Well I would have had to wait for a couple weeks. I am glad my body finally settled down and decided to cooperate and heal. My hair is still falling out in droves so I cut it short as I kept clogging the drains. The hair could be falling out for a number of reasons but most likely due to SJS flare and the stress on the body for having to deal with SJS. I participated in the Educate before you medicate SJS holiday campaign and you can see the video here:


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I am really grateful for the strong SJS community on Facebook. However, everytime I read about a child that goes through this or see pictures of them with third degree like burns over large portion of body I cringe because of the pain they are going through. I feel the fear that the parents are feeling because they do not know if their child will recover. I hope more people can learn about this crazy scary reaction. I wouldn’t wish it on my worst enemy – that is if I had a worst enemy.

So 2014 is almost over and it has been overall a very successful year for me. My headaches are becoming more controlled. My speech has rocked! I think that is because my brain is thinking faster and I am uptaking information and processing information faster so my stutter doesn’t show itself unless I am getting overwhelmed with too much stimulation. I am able to read and say larger words like my medicine and scientific names or larger vocabulary words now. I am also knowing the meanings for some of these words too. I used to be able to do the Reader Digest vocabulary quizzes easily. Not so much now, but better than before.I still get easily tired but I am slowly building myself up. I am trying not to do too much. I have really limited activities in my life. I need to make sure my gas tank doesn’t go empty or else I will go backwards. I have been doing the brain injury re-learning thing three times a week. It is only an hour each time. Well recently I have actually been attending sessions for an hour. I was maxing out at 45 minutes for most the time. I also aim for three times a week, but mostly attend two times a week. The body doesn’t always want to do what the mind wants to do. I have been using the swim spa regularily and it has helped make me stronger. I feel good finally being able to exercise. I like that is is in the backyard because public places are too loud, too crowded that I can not function for long. I have been doing mindful breathing and meditative time. It has really worked.

My biggest accomplishment this year has been that my brain has re-wired my ability to dream again. I don’t mean hopes and dreams type of planning but actually dream when you sleep. This started about two weeks ago and I am loving it. I don’t want to get up if I am having a great dream. After my surgery, my dream world was pitch black. I then progressed to just noise and then flashes of lights and then partial pictures and the whole pictures and stayed that way for a really long time. My dreams are really messed up. Let’s not get Freudian or anything but I find them weird that I dream about my old job in Manning, Alberta but people from my job in Fort Nelson are in it. I think my brain is trying to compartmentalize. It is finally re-wiring and healing. The info is in there but it all mixed up. My brain has distinguished that they were both forestry jobs but can’t yet tell timeframes. Or something like that – I am not the neuroscientist or neuropsychologist. These dreams are action dreams like movies, with motions (not necessarily sound), somewhat of a story line or plot and I am just so excited that dreams are not a part of my life again. And that I actually remember some of them. My first dream that I had was that we were living in a warm tropical place with an awesome beach. It wasn’t very long but had action of the four of us walking and playing on the beach and then buy fruit from a vendor.

After Christmas, I stopped taking my sleeping pill. I have been using essential oils and breathing to help me go to sleep. I have been trying to get a healthy sleeping routine – well I am trying to at least. I am not sleeping as long, but I am sleeping more than without use of the oils and breathing. What gets me is the burning/ants crawling feeling is downright annoying at night as it is more pronounced.

I can’t have everything all at once and need something to work on in 2015. I can not wait for the new year. I have a feeling that is going to be an amazing year. That there will be many great things coming my way! Here’s wishing you all the same for 2015 too!


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Yes it has almost been a year since I took fingers to a keyboard and wrote in this blog.  I wanted to write but I also wanted to take the time to allow myself to recover.  Well of course TBI recovery does not come over night or in the first year or so.  You and your family can read the words but to fully understand what recovery means is to actually be apart of the snails pace, accept feelings of anger and frustration, accept the long declines and plateaus and celebrate the upswings!

Here is a letter I wrote to someone who is doing a photo project on brain injury and recovery:

“Hi Audrey:
 
my name is Kelly boreson.  I was diagnosed with congentital hydrocephalus after a long period of trying to figure out what was wrong with me at the age of 40.  I had ETV surgery September 2012 and went into inpatient rehabilitation at Foothills hospital in Calgary for 7 weeks at November 2012-January 2013.  I am recovery from a TBI which include right-sided weakness, executive function, head pressure and pain,fatigue and aphasia-like symptoms with stuttering quirks added to my life. I did experience a bit of right-side neglect as well.
 
In my former life I was a full-time wife and mother,  part-time environmental specialist, part-time college instructor and part-time stock photographer.
 
In my new life I have learned to be grateful of everything. Hope and Preserverance are number one for both me and my family for my recovery. I a new view for the struggles of people with dis-ease and dis-ablity. It is about adabtabilty and coming up with new solutions to do things. Rehabilitation is everyday.  I have to practice my words, think of categories of objects, think if what I am going to say ahead of time for conversations.  I am quicker at writing as my fingers and brain use different paths but computer time is limited due to my visual overstimulation. I have to exercise at a new level  – slowly at 120hb/minute. I have to practice balance, I am doing art for therapy, I am in counselling for anxiety and learning about the new me. I go to Occupational therapy to help with planning and working out steps for things.  I look normal and I am normal just a new normal with a lot of quirks! My old life seeps in and I feel that I want to take on lots and then I crash big time.  It has only almost 2 years and I still feel like a toddler in this new way of doing things.  I am not the only survivor in my family; My entire family are survivors and each day we are taking steps to survive. My life is a 5000 piece jigsaw puzzle that is a little overwhelming but slowly I am putting the pieces together.
 
This photo was the last studio photoshoot I did November 2012.  I have revamped my studio to an art room. I remember doing this shoot and another shoot where the studio lights were so overwhelming that they made me mad and I couldn’t figure out why I couldn’t get the right side of photo in picture.  So the photo is almost 2 years old.”
 
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 I admit that with my lack memory unless I am cued, I did forget about this blog at times but then I would have fleeting moments where I wanted to write but I knew I couldn’t. I hope to write in short spurts more often.  Out for now as I am creating a larger headache & vision going – gotta listen to the signs!


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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:)