Howdy Hydrocephalus

Understanding my unique gyroscope


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One Size Does Not Fit ALL!

It has been a while since I wrote. After the botched Botox and uncooperative Nurse, I had an appointment with my Dr. From the brain injury clinic at Foothills. I asked if I could she could send the migraine protocols that she used on me over to the nurse who did my Botox. I explained that she put needles in my jaw for TMG and in my cheek below my eye. I also said that they didn’t use as many needles and I was in extreme pain so I took desperate measures to get Daith piercings done.

She told me she could not control how the clinic did their Botox for migraines and said I should come back to the clinic in Calgary. I agreed.  

Yesterday I had my appointment with her. I told her I went to see a local MH neuro who basically was shocked that I was not 60 or 70 because I was too young to have Hydrocephalus. Then he asked me to explain how I got hydcrocephalus as he was looking into my eyes, and doing my reflexes. He then interrupted me and told me he really didn’t want to know, but he was just distracting me so he could do a quick assessment. Then He asked me why I was seeing him, I said I didn’t know. He said that Dr??? Sent the referral. I said I didn’t know who that Doctor was and then he said my GP’s name. (SIDENOTE: Oh it was from January when my head was in extreme pain and my Hydrocephalus was acting up due to the sinus thing. I wasn’t the most happiest patient at that meeting. If only the Dr. Said to me at the time that no worries your symptoms get extremely worse when you have a sinus problem instead of saying no nothing was wrong with me just a sinus issue. ) The MH neuro then said that he could not treat me for pain, but another local neuro may be able to. He then asked if I had seen a psychiatrist. I said in hospital, I had neuropsych tests done twice. He said “that is psychology” and brushed it off and said to me that he is referring me to a psychiatrist because I look anxious. I told him I was anxious because he was a new doctor that I had not seen before. Meanwhile, I felt not listened to, pushed off and the typical MH dr. Response of I am not going to treat you because you are not an easy cookie cutter type of condition. So then I asked him…what he specialized as a neuro in MH? He replied that he had no specialty because MH did have any. So then I questioned what did he do as neuro then. Well he was not to impressed and really just gave me a brush off type of answer.

My Dr. In at the brain injury clinic said stop going to these appointments. I told her that I didn’t know who set it up. I thought it was apart of me trying to find local Dr. To take over my case management and begin to treat me. I told her I didn’t realize it was from that Dr. I saw in January. I told her that yes I was upset, but I was scared and in pain due to not only the sinus thing, but also being off the Pristiq for nerve pain (but didn’t  know that at the time) so that the Dr. Basically set this up so I could see a Psychiatrist and get my crazy all taken care of. She told me that I did see a Psychiatrist at Foothills more than once with the testing and they didn’t find anything crazy other than being anxious and slightly depressed at the time.  She then shook her head and said that having Too many cooks in the pot just mess you up so now I will continue to see her ever three months. She will make sure I am on the right meds and get me the help I need. I am so blessed and grateful to be under her care full time again. She has been the best Doctor I have seen since this whole journey began. 

It is so true having that one Dr. Who cares about what he or she does and cares about their patients makes a world of difference. It is the Doctor who wants their patients to become as good as they can and not just say well you hit the two year mark…this is a as far as you go. It is the Doctors who DO NOT provide alternatives, different approaches, resources, empathy, caring and only see patients as a ten minute time slot that keep the TBI suicide rate so high.  TBI is like any other chronic illness, it is lifelong, uncertain, often filled with confusion, isolation, limitations in mobility, sleep, cognitive, executive functions and a wide array of other physical, emotional and financial challenges. Pain and fatigue are the rulers of your day. Pain and fatigue can make you bed ridden for a few hours, to a few weeks. This can affect your mental well being because of continually letting friends, family and work down.
The downside of these caring and compassionate and driven Doctors are that they are far and few between. That because they are empaths, you can see the burnout in their eyes and their actions. My Doctor has shown these signs for the last year.  You can see it in her eyes, how’s she holds herself and the lines etched in her face. I only hope that there are resources available for her so she does not leave this career where she is amazing!!!!!!!!! Or that she decides to put herself on autopilot and not care just so she can survive the long grind until retirement. 

How can I help her? We usually bring a gift card or some sort of treat for her but I forgot yesterday.  Any suggestions? Has anyone else experienced such a great Doctor but see how the corporate pressures of trying to get patients treated in their local communities is hurting him or her.

Please let me know. I think we all should try to rally around the good Doctors who take their profession to heart and string up those shitty cookie cutter doctors who really cause more problems than solutions. How can we make the Canadian Medical system better rather than see it become worse and worse.

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Abilities

Found unpublished from December 2012
When I look around, I am very fortunate – I have a few minor glitches to work out.  I am not too certain what but there is a family meeting next week to give everyone the lowdown and plan for my quick entry and quick exit of unit 58.  I am very lucky to be here.  There are so many wonderful people – temporary residents, staff, doctors and therapists.

I had physio today and I thought it wasn’t too hard, but my right leg is throbbing now.  I think it was the extreme effort it was to hop 1m in two jumps on my right leg. I have to remember not to look down when I walk but straight ahead.  And I didn’t have to do anything with my eyes closed!  I met with a person from Occuptational therapy and tomorrow we test.  I did good on my speech tests on remembering  numbers and stories.  I even remembered a phone number when usually I don’t but the first three letters were 279 (I think) and were the beginning of Richmond, BC phone numbers where I grew up so I feel that I had an advantage of using the first three numbers for many years.   She asked me a question if I was wearing glasses…I paused…well I am wearing contacts so yes and no.  I had rec therapy.  My homework is to come up with three things I would like to work one while I am here.

So what is it like here?  Well it is intimidating.

On this unit there are many people fighting back from strokes & brain bleeds.  There are also people that have suffered just dumb luck accidents.  For example, tying shoes at top of stairs falling and breaking neck, but lucky not to be a quad.  I forget the guys name that told me that and would ask him but he was transferred to an extended care place today.  There are people who have been in vehicle accidents.  Guess what the meet the stats – mostly guys!  Then it looks like most the stroke patients are mostly women.  It is crazy.

I think they should bring in new drivers and people who are at risk of stroke to spend an afternoon here.  I wonder if it would make a difference.  I don’t mean to parade around all these wonderful people who trying to overcome their own battles, but maybe it would make a person think about their lifestyle choices.


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Life on the Unit

The fish tank

The fish tank

I completed a 3.5 hour neurospsych test in a quiet uniterrupted environment on Monday. It took me 24 hours to recover physically and mentally. I can not even begin to explain how exhausted I was. To put it simply it felt like I had run a marathon (not all desk work) and a truck ran me over! The results were to be expected that I do have some difficulties with short term memory, visual processing, thinking processing speed etc….but overall within the normal range for testing. The kicker was that it was stated that testing was done in a quiet environment so that the results so that they do no reflect real world situations and to expect that all hell may fall apart when put back into real world scenarios. That with continued time and therapy, I should be able to learn strategies to adapt. (oh goody! can’t wait) The psych indicated that when I plan to start my masters we may want to test again to determine what accomodations may need to be in place for me prior to starting. Mmmmm not to sure if I want to drop $25,000 when I am not bringing in any income. I was planning on working and completing my masters at the same time to offset cost. (I am not going to think about this at the moment – it hurts my head! I will focus on getting better first)

So what happens when you are guest on the unit. Predictable routine happens. We wake up, get ready, have our medicine and eat breakfast. We get to choose our meals for the next day at breakfast and the fun part is that we may not get or remember what we picked so meals each day can be a surprise. We are all scheduled in to a vareity of groups and therapies with intermingled breaks.

Every day I am scheduled to go to the gym where we are working on getting my right side strength back. I have physio where they work on my right side coordination and getting the head to body part connection quicker. In Speech, I am working on techniques to help with my stutter which includes many steps and coordination. Occupational therapy works on my audio attention, and my being able to take in all the wonderful changing environments and stimulation. It helps with problem solving and gosh knows what else. I also have recreation where I sometimes work on my sorting my photography drive, make cards and some other weird art piece. I also participate in the physical recreation in the gym where if I am concentrating on something my visual inattention is noticeable. I jumped like crazy when I didn’t see a basket ball bounce right near me.

Each session is 30 minutes long. I know it doesn’t sound like much and I even looked at like – Whaaaat are you kidding me, but after 30 minutes of physical or mental I get wiped and have to lie down for a rest and usually get a headache. Yup a rest. I never used to have to do that! I still can not get over the fact that my body and mind still act like they are possessed by some dumb/slow lazy person which was totally opposite of how I acted before. I miss being super quick at talking, thinking, decision making, switching tasks, multitasking, living life etc…. I like how I could only put in minimal effort get my school done with good grades and work done to spend more time playing or creating and being with family. Now it seems that I need to put in great effort to understand what I am reading, coordinating, putting together my thoughts and doing things. I know that I must be patient and that I am only four months into recovery and will see improvement upwards of two years, but I guess I am still missing the old me. I have read that people with a brain injury do go through a grieving process – denial, sadness, anger, acceptance (don’t know the order). I know I am at the acceptance and moving forward phase and it is okay to miss the old me. I am learning news skills for me to adapt and to move forward. Just wish I could learn them quicker so I could gain back some control so I can begin to plot a new direction.

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Small Miracles

So what is it like here in Unit 58?  Well the first week was intimidating and somewhat overwhelming.  This unit is a short term rehabilitation floor for stroke patients, spinal cord injuries and brain injuries.

First of all, I really don’t like hospitals – that is where all the sick people are you know!  I knew coming in that I would have to suck it up and get over being in the hospital part.  Second I was told there would be people of all abilities.  I thought I could handle it because I used to to work with people of different abilities but that was a long time ago.

Boy I had to get over my discomfort quickly.  You sit in a communal dining hall with people at various stages of recovery.  There are people who are in wheelchairs who may or may not be getting the use of their  limbs back.  There are people stuggling to eat, eating via a tube. There are people with canes, walkers and mobile like me.  There are so many things that run through your head like “feeling sorry for them, feeling uncomfortable about where to look, what to do, and getting over the feeling of that I was lumped with these people”.  Yup accepting that took a day to get used to it.

So why are other people here.  There are people who have had strokes & brain bleeds.  There are also people that have suffered just dumb luck accidents.  For example, a older man was tying his shoes at top of stairs and then fell and broke his neck. He expresses that “he is lucky not to be a quad”.  I forget the guys name that told me that and would ask him but he was transferred to an extended care place last week.  There are people who have been in vehicle accidents as well.  The youngest person here at the moment is a girl in her early 20’s and she suffered a stroke.

I know when you read all the stats about stroke victims and car accidents and every wonder if they are true. Yup they are.  Most of the younger stroke patients are woman and most of the younger spinal cord patients are guys.

I think we are lucky to have this great facility especially when you see small miricales of watching a person walk for the first time around the unit yesterday and my neighbour walk down the hall to the dining hall today.  I can not even imagine how much happiness they are feeling, but I could see it in my neighbours face.


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Committed to being Committed

I had my appointment at the Brain Injury Clinic at Foothills hospital yesterday.  It was quite the experience.  I met an amazing social working and doctor.  I was asked lots of questions and had to do some tests.  I was told to come with a list of the weird things that have been happening to me.

They asked about how I was before I began to feel bad – Healthy & fit – no medications.  How I felt before surgery and how I felt after surgery.  This appointment was long.   I felt comfortable to go over what I have been experiencing:

  • Head hurts if I drive too much (which isn’t anywhere outside of town compared to my 600km days)
  • Head hurts if flickering indoor lights or sunshine
  • Head hurts if I am thinking too hard (I know sounds silly but so true)
  • Head hurts if I am on computer too long or watch certain television shows (I am my own worst enemy with the computer)
  • I have issues with noise
  • I have issues with reading and understanding directions/technical
  • I am a little slow on the uptake with understanding and reading
  • I can be super tired and go to sleep easily  to wake up suddenly for one to four hours every night since surgery
  • I have itchy skin
  • Of course the swiss cheese like memory stuff that is very erratic and scattered
  • and on bad days I still get a tingle numb face patch around my right eye and cheek

Phew…that was a long and sounds like a somewhat whiny sounding list.  I was expected to be judged and told I was crazy because I look physically the same as before (minus the muscles plus the added pudge from lack of activity), but instead was told that was in the normal range to have these symptoms for having what the Doc calls a “major brain surgery”…mmmm…I am confused, I thought it was a relatively minor procedure.  I still think it was considering what I saw on the acute neuro ward.

After the interview stage the Doctor wanted to do a neurological assessment.  I knew a Mocha was coming and I felt confident I would do pretty good.  Okay I did pretty good on the naming the animals, knowing where I was,  naming things that begin with an F…started off slow but dredged up some forestry terms and recovered.  I did great on a couple others then it went downhill quickly with subtracting from 100 and recalling the damn five words I was to remember.  Okay I sucked that up as I am still recovering, but really thought I would do better.

Next came the physical stuff -easy peasy right!  Or so I thought.  I really didn’t have a clue that my balance was wonky until I had to stand with feet together and eyes closed.  Then it was really embarrassing to look at the doctor as she had to explain more than once a simple task I was to do.  I mean this stuff should come easily or so it used to.

So after a very humbling experience and feeling a lot stupid, because I was never like this.  I am faced with the unknown of where my future may be.

The Doc gave Chris and I some options to help me on the fastrack back to where I was.   I agreed to take a little blue pill that when in higher doses is an anti-depressant but in smaller doses the side effect helps with headaches and helps you sleep.  We also committed to have me go to Unit 58 for two weeks of inpatient rehabilitation.  All I know is that some time next week, the unit will call with a check in time for my next new adventure.

The weird thing is I am more anxious about this than the ETV surgery.  I knew that the surgery would have a great outcome, but no one can tell me what the rehab will do.  But I will never say no to  a new challenge. Plus they said to pack my bag like I was going on vacation…yes…that’s what I will keep telling myself…a two week vacation.


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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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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!