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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Limbo

I just love hanging out in limbo especially since I am not supposed to drive.  I have had to rely on wonderful friends, Sara, for getting Wy to school and TKD.  I did drive once to get Wy to a b-day party and boom instant head pain.  I think it is a disconnect between brain and visual reception. We went out for dinner.  I could hear the fajitas sizzling from across the restaurant.  Then there was the grating noise of sweeping of a broken glass at the bar.  It was crazy.  I was wiped after that and had the worst case of insomnia that night.

It has been a hard week. The medication makes me feel really tired and out of it in the morning, but was still waking at night. Following directions, upped meds last night and I did sleep with only fleeting periods of waking but still felt like a truck hit me in the morning.

I have also struggled with feeling down and completely non-motivated.  I think not having the freedom of just getting in the car and going really affected me.  I know that I could take the bus…yup I could…but haven’t talked myself into doing it yet.  It would take two buses to get the boys to school.  Mmmm…still need to work myself up for that one! D & I did go out for walks, even on the cold winter afternoons, but we mostly just hung out and did nothing. I think I played army and baked cookies.

I haven’t been on the computer very much.  Today has been the most and I can feel it already.  Need to get family christmas pics edited, christmas newsletter and some long overdue blog posts done.

I am told that a bed will open up this week.  I really hope a bed opens up quickly so I get everything started.  I will then have a better idea of what I can do or not do at the moment, the reasons for getting tired and maybe some idea what all my newfound quirks are.  I need to have all the assessments to figure out if I can go back to my old job or re-structure a new career path. Having little strategies is what pisses me off the most.  Yes I know I can hang out and be a hermit but really is that productive.  Some days I feel yes that is and others not so much. Here’s hoping getting in this week so I don’t have to be in the hospital for Christamas.


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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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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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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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