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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Breaking the Seal


I have not written since June 21, 2016 after my Endocrinology tests. There was not much to write about. Okay I admit there has been plenty to write about. My two little energy pills twice a day has allowed me to use the hash tag #summeroffun. I have had the most energy since December 2011. We did kayaking, paddle boarding, walking, easy hikes. I stayed up later than ever. I even painted two walls in the house spur of the moment. Don’t get me wrong these were not all day events.  Maybe  1-2 hour activities with a break then a rest and then another activity then break and even a third activity that day. It has been amazing on that aspect but I was still feeling fatigued and weak. I still was losing weight for July but from August 10th to today I was on holidays where I ate more than normal with big breakfasts, large dinners and plenty of junk food in between. I drank a lot too…those empty beer calories but those beer taste so good sitting on a deck BBQing. From that unhealthy summer binge at least my weight was stabilized and gained 2lbs. When I went to for my follow up Endocrinology appt. on August 22, 2016 I weighed 126lbs.So from undiagnosed hydrocephalus to brain surgery on  September 4, 2012 20 to August 25 , 2016 I was peeing every 15 minutes. I really have no idea how many times I would go pee because it would be in a sleeping pill delirium. I know always at least 6 or more times. I would get about 2-3 hours sleep and then the pee train would start. But hubby says that I go even then but I am most likely sleep walking  and don’t remember. So in reality I was getting very little sleep every night. 

My peeing was overlooked. I mentioned it to my neurosurgeon more than once and he just said I should drink less so I did. With my brain injury, I was not self-aware of how bad my peeing still was after surgery. I had other things going on too such as neurogenic stutter, getting my right side to cooperate, feeling confused and trying to overcome daily chronic pain. 

So I think last summer when I was camping at Elkwater Park I got really dehydrated. So I made it a priority to drink more water. I needed to get in my 8-10 glasses then an electrolyte powder and more water if out walking or in the sun. This is when I first noticed my peeing all the time. This lasted until about December where I couln’t take it anymore so I cut back my water consumption and went to myt GP. Between December 2015 until April 2016 I had many blood tests for Diabetes Mellitus (DM) and each one came back negative. 

I had begun to lose weight. I had no appetite and was nauseated all the time. My sides and belly would hurt. My hair was falling out all the time and I had very dry skin with a persistent rash that would not go away. I had only enough energy to take kids to school, crawl back to bed, sleep all day only to get out to pick up boys. Libido was non-existent. I would wake up each morning feeling like I was hung over.  I was going to the bathroom so frequently that I was going through at least one of those double toilet paper rolls every day. 

Ouch as my  nethers began to feel sore and every time I wiped it was like sandpaper. My life revolved around bathrooms. How long I could make it until the next bathroom. I would pee at least 4 times leading up to leaving house. If local short trip pee when arrive. Pee again at next store…followed the same pattern over until I got home again.

After my testing in June, I decreased the amount I drank even more. But nothing changed. All I can compare it to is if you are drinking with friends at a pub and go to the bathroom and they bug you about “breaking the seal and that you are in trouble for the  rest of the night”. 

So basically if you are drinking and finally go to the bathroom; your bladder will not hold anymore and want to go pee more frequently. So my life had become an out of control broken seal nightmare. That not only affected me but my family as well. That is until August 25, 2016.
I had my follow up appointment with the Endocrinologist on August 22. I found out that my growth hormone was great but my anti-diuretic hormone was not so great. He diagnosed me Central Diabetes Insipidus (DI).  The Doctor said that I most likely acquired it from my ETV surgery. He said that all I would need to take is one spray of vasopressin before bed (maybe one during day too) and that it will work quickly. That you could tell if the meds would work within a couple days. 

The appointment was positive but after being  to many doctors and on a Pharmacy of medicine and treatments that did not work I was really skeptical.  I had to wait until August 25th for my meds to come into town. I took it or tried to and went to bed.  I woke up the next day and felt refreshed. It was still a sleeping pill induced sleep but I was only  two or three times. I was amazed but still skeptical. It is the August 28th and I drove 3.5 hours without stopping to pee. It was the best drive in. A long while. I was not as tired and I was able to concentrate.  My vision didn’t go blurry either. Here is to re-balancing my ADH hormone, electrolytes and no longer being chronically dehydrated. Sorry toilet paper companies….you can shove your mega packs I will be using less of your products!!


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Natural Adaptation

I did this image and descriptions after my follow up appointment when I was still in Calgary. I had Chris help with some of the details that I had forgotten.  It was awesome to see the before and after imagery that showed the CSF flow.  It blows my mind about how my body adapted because if my body didn’t compensate – who knows what!

No wonder I was a perfect candidate for an ETV surgery.

I had a busy weekend last week that took me until Wednesday to recover.  We went to Calgary.  When in Calgary it is super busy because we want to go places that we do not have.  There was a one hour trip in Ikea (all I could stand & kids play time only); swimming in the pool with two waterslides (noisy);  dinner out (that was maxing me out by the time we left there); value village (that was surprisingly packed); lunch the next morning and conversation with relatives; drive home where I passed out; then came home to a wonderful surprise party with a great bunch of friends.  I was completely blown away.  All this action with little down time fatigued me so bad that it was not until Thursday that I had energy.  I had lost track of days and thought thanksgiving hadn’t happened yet.  I had compeltely blanked on other things as well.  My brain didn’t like me doing all this activity.  I made a schedule of my new routine for my OT appointment on tuesday but I had forgot to put in any down time.  So this week has been no more than 30 minutes on the computer at a time; two naps/downtime rests a day.  I need to take breaks to let the brain heal.  I need to remember to do this.  I am finding it very difficult to do this with a 4 & 6 year old boys; a house to somewhat clean (never been a big housekeeper); get boys to their activities and school; endless laundry; grocery shopping; driving; and maybe a hobby like writing or photography.   I am torn because friends want to do activities and I don’t want to say no – I want to be like I was – endless energy and always go-go-go but that is not possible at the moment.   So this week around mid-Wednesday on has been a successful week – okay Saturday was a little crazy and I am feeling it this morning, but I am not doing much until a two hour play date this afternoon.  Heres to taking successful baby steps in letting  stuff slide.

 

 

 

 

 

 


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Two steps forward; One step back

Being a somewhat impatient person but hopeful and positive person, I was aiming for one of those recoveries without any issues; a straight line recovery without any steps or plateaus.  Last night I started to feel just off; my leg and vision felt weird.  Maybe, I had just pushed myself too hard.  Crap a lady in a walker beat me walking so I know I am not walking fast. Maybe I didn’t rest enough.  It feels like all I do is sleep and rest.  I had a cruddy sleep, very restless; some falling feelings paired with an upset stomach.  I awoke feeling  like shit.

I felt so awful that I didn’t get to see D go to his first day of preschool.  He is so easy-going that he went without a peep! Chris tried to take pictures in the classroom but instead hit my Iphone video instead and didn’t know it so there is a video of mass movement with voice but nothing of D. Chris, however, did get a good one of D walking from the car to the school with his backpack on.

During this time, I felt cold, felt nauseous and extremely tired so I was balled up on the couch sleeping.   I slept until almost 11:00am.  I then had a bit to eat – so far so good.  I want to go with Chris to pick up D so I do.  This wipes me out and when we get back to the house I sleep until 4:30.  I get up feeling okay, so I help W with his homework and get leftovers out of fridge for dinner.

I am now done once again and already in bed.  Accepting that today is not ideal is no problem and that tomorrow will be better is easy but I also must remember  that what I am experiencing could be a sudden ETV closure, but not to panic or over analysis any symptom because what I am feeling could just a viral infection due to all the kidlets being back to big petri dish (viral breeding ground) called school.   Anyways today definitely falls into the two steps forward and one step back type of day.  Grateful that this journey is teaching me so much about myself.  All is good and educational:)


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Checked Out

My status was upgraded and I was moved late yesterday afternoon.  I now have internet and television.  I have a roomie, who I nicknamed Full Frontal, is an older man who has had a brain tumour removed.  He doesn’t speak English very well and apparently doesn’t like to wear underwear.  He was lying on the bed with his legs up.  I walk by him to go for my hourly stroll and turn to say hi but instead is given a show.  Yikes is all I can say.  I mean, really, he has nothing to lose with how he acts. I think he is having confusion issues etc….

Last night I had the best sleep but with some weird drop off sensations – CSF and brain adaption, as well as mild fever.  The nurses still came in to do vitals and give me Tylenol throughout the night.

I saw the resident at 7:30am and she told me that she saw my CSF scan and that everything was flowing well so I was good to go this morning.  I said that didn’t have a scan yesterday.  I asked if they were reading my Friday scan? I am now starting to worry if I had really needed an ETV operation.  She says to me “I read the results from your September 5 scan.” I then said again that “I did not have a September 5 scan. Did you get the information mixed up?”  I was beginning to wonder if this was a test in my lucidity or memory skills.   The resident comes back and says that no they didn’t do a scan on me but placed the date requested in the wrong column.

So I was told that if my MRI was good, I would be allowed to leave.  I had the nurse confirm if my MRI form was in and it was so it was just a waiting game.  I get the staples from my dressing removed so I can have a shower and find out I have six staples.  Thank God for having plenty of curly hair.  You can only see the staples if sunlight glints off of them.

Full frontal’s wife comes in to help get him ready to go have radiation therapy.  Once they leave, an aid comes out packs everything up saying that he has been discharged.  I told her that “they had just gone to get radiation done.” The nurses say they need to prepare the room for an “emergency” coming in.  The room gets cleaned and another older gentleman comes in with his wife.  They were talking to each other for a bit.  When I get up, I introduce myself and Chris.  They are super friendly and talkative – finally people that want to chat!  The reason is that they are so relaxed have been here before in 2009 for a tumour removal.  The man yesterday started to feel confused and got brought to hospital by ambulance.  They are waiting to find out if he had a stroke or if his tumour is starting to grow back again.

Chris has been here since lunchtime.  We watch a movie called “Connie and Carla” and do tons of laughing.  I have done lots of laughter through this and I will continue laughing as laughter makes you stronger.  I watch the Stars helicopter come in below me.  Full Frontal comes back and uses the bathroom.  I get up and see that he is doing is his physical assessment.  Next thing we know he is set up in another room – yes confusion/cognitive/mobility issues.

At about 5:00pm I get a call that a porter will be coming for to take me down for an MRI. I am wheeled to the nursing station.  The Hydro nurse practitioner dictates my discharge papers so all I need when I comeback is to have my IV taken out, and signed unit nurse.

We wait and wait and wait.  Finally a porter comes and takes me down to MRI clinic.  We go to the basement and get wheeled by the morgue.  It is freaky down there where you feel you  are either going to a pool or playing a part in a horror flick.  I have my MRI and get wheeled back up.  I am finally checked out!  Well checked out in an acute neuro ward may not be the most appropriate statement to say.  No wonder they use the term discharged instead.  Discharge to me is an oozing wound or leaving a mental institute.  I think checking out as leaving a hotel. 7:30pm I am at the desk and what do I see is full frontal wandering out of his room confused with gown wide open, but this time he is wearing underpants!  We get to the campground at 8:00pm, after getting a salad and spinach pie at Safeway.  I am happy to be checked out but am exhausted.

 


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The Day After

Lines on my forehead

Well like anything, I had the highs of seeing immediate improvement to the lows of pain and throwing up at 10:30pm yesterday.  Between 3:00-9:00 everyone was impressed with my improvement, then I began to run a fever, the brain swelling kicked in and Bammm! I was not doing well…I lying in bed wtih a ton of blankets, teeth chattering, sweat beading of my forehead, kinda delirious because of the head pain.  I was not scheduled for Tylenol for another three hours but they give me the option of Oxycontin or morphine.  I know I do not do well with any type of pain-killer other than regular Tylenol.  They give me a pill and sure enough, the puking starts…great I am throwing up beef barely soup (which I will never eat again) and the action of throwing up is making my head hurt immensely. I am given an IV of gravel to help ease my crazy stomach. It takes until 2:00pm September 5, 2012 for me to feel better. I get a to use a face cloth to wash off the iodine and blood off my forehead only to discover that there are lines drawn on my scalp marking the location of the entry point.  I feel like I have a highway up there.  Maybe that is why there is pain.

I want to leave because this place is claustrophobic in a sad sense.  There is a lady who is in her late 30’s who had a bad stroke, a guy in his 30’s who got sick and his brain got infected and many others in states of disrepair. There is a lady who went for brain tumor removal to find out that it a death sentence where she only has a few months to live. Then there is me.  I am a little uncomfortable – headaches, tenderness are to be expected. I run a fever on and off so really I am in good shape and things in life could be way worse.   I have been tested by the Occupational Therapist and brain injury relearning is being set up in Medicine Hat and in Calgary.  My physiotherapy assessment rocked so I am good to go and do things when the Doctor says it is okay.  I am told six – eight weeks of walking as my  “heavy” activity.  Action plans are being drawn up for me when I am released.  I am good hands.

I was to have an MRI today but who knows when, It is now 7:30pm and I haven’t been called down.  Last night they took blood at 2:00am and the residents did rounds at 6:00am so I may get a midnight call for an MRI.  The positive news is that I have been moved from the acute side to the Almost good to go side!  I am now in a room with my own washroom, television and the best view in Calgary. Even my nurse (Michael) says it is the best view.  He thinks that is should actually be a view for a nice restaurant instead of a hospital room.  I can see the Bow River, Calgary city Centre, McMann Stadium.  I am lucky.  Tomorrow should be sunny so I can  hopefully get a better picture.  I already can tell sleep will be better tonight, my head is not so tender or sore.  so here is for a great night’s rest and a release for sometime tomorrow!


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A Room with a View

The alarm went off at 4:15am.  I got out of bed and walked down the hill to the washroom to have a shower and use the special antibacterial soap on my scalp.  It is a chilly 8 degrees in the washroom as the windows are open, making my shower very brisk. I am not nervous. Everyone else around me is almost irrationally nervous/worried.  But I am calm.  I have no doubt that everything will go okay today. Being a great researcher, I have read both the good and the bad about the surgery.  I have faith in my neurosurgeon and surgical team.  I know deep down that I will be fixed.

The hospital building is dark and doesn’t look open. I am the only one at admitting where I am directed to day surgery.  I am given my new uniform of a fancy blue gown, housecoat, blue booties, and two more wristbands. Chris stays with me and we make jokes about the surgery. We will be moved from day surgery to the main hospital operating room near my surgery time.

At 7:20am Chris and I follow a porter to the Operating Room waiting area that is somewhere in the main hospital.  I have no idea where, because my glasses are off and I can not see a damn thing.  We are told to take a seat in the waiting area.  I put my glasses back so I can see.  We watch the waiting area fill up; all the doctor’s & nurses take their patients to their “theatres”.  Now I am the only person left.  I finally meet the resident and anaesthesiologist who say that they are getting the operating theatre ready.

I meet a nurse, give my glasses to Chris and kiss him goodbye.  I walk down the hallway to my door.  Inside there are at least six people.  I lie down on the table with my head in a brace, my arms are placed out like on a cross and I look up.  I see all the big lights that look like satellite dishes.  One of the lights has the nice camera that is used to guide the surgeon in my head.

The doctors all ask me how my summer was & I ask them how their summer was.  I am then given freezing in my arm for the IVs to go in. Then  a nurse puts a mask over my mouth and presses down.  I almost lose it, as I start to panic.  She says “take a deep breath, it is just oxygen” then the anaesthesiologist says “I have started to give you a cocktail”.  Yup he did, my shoulders, arms and chest begin to feel tingly.  Then he says “this will sting” and yes it does more than sting and I am out for the count.

I wake up thinking I am digging for dinosaur bones at DinosaurProvincialPark to find myself having three nurses and one of the surgeons looking at me.  I don’t have my glasses so they all look like fuzzy blobs. I am taken from recovery to the 11th floor acute neuro or brainiacs ward to my own  personal room with a view.

By noon, I eat lunch; by 3 I am walking around and doing good; The fog has been lifted and my vision on right side is better and  brain is clearer.  I thought I was an invincible machine but soon found my limitations short walks, short video watching and short reading and lots of sleeping.

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