Why Write

The idea of writing a blog came to me after I was told I needed brain surgery to clip a growing aneurysm before it could cause me serious harm.  I was scared out of my wits and as I rang my family and friends to break the news, I realised I needed an easier way of keeping everyone up-to-date with how I was doing.  A blog seemed the natural outlet.  What began as a means to keep in touch with people I knew, slowly showed me I had powerful experiences to share, experiences that could be helpful to others.

Having endured and survived a stroke, two brain surgeries and two spinal injuries, I write now to share what I have experienced and learned as a means of helping myself put it all in context and in the sincere hopes it will assist others going through challenging times.
When I go to see a new doctor who has read my file, they always look surprised when they meet me. They expect to see someone with a walking aid, a serious limp or simply someone broken by circumstance. That’s not me.
I have worked hard to recover, done all the rehab I could in order to be able to live my best possible life – and it is this outcome that I want for anyone who has suffered a serious injury or illness.
All too often the medical profession gives up too soon, or insurance doesn’t cover all the treatment we need or our well-meaning loved ones coax us to go easy. So many of us quit too soon and live with limitations we might overcome if things were different.
I’m here as living proof that by taking control of your own life and your recovery, you can set your own meaningful goals, find personalised ways to rehabilitate and recover, so you too can make your best possible recovery, leading to your best possible life. After all, who knows your heart’s desires better than you.
So if you are in need of some company on your journey or know someone who would benefit from knowing they are not alone, follow my journey or share my blog, because together we are stronger and healthier.

Crappy Complications (a flashback to 2014)

I never intended to take a break from writing about my recovery but alas the events of the last three months of 2014, conspired to render me mute. I hope that anyone wondering as to my progress assumed I was distracted by a return to full health and was busy living my life. This was, unfortunately, not the case. I have no desire to document everything that befell me in the last three months of 2014 but would like to provide an accounting of that time; it is only reasonable to have an accurate record to reflect upon. Who am I kidding – it’s for catharsis!

So dear friends, readers and other neglected persons let me share with you the events that left me unable to rally a defense.

My last post in October 2014, (five months post-op) was about the early signs of full recovery and I genuinely felt on the threshold of improved quality of life, despite continuing painful headaches and funny (new) episodes of dizziness and passing out. To the latter, my GP assigned blame to Morphine, dropping my blood pressure too low, so that whenever I stood up I became faint. Once these episodes reached the point of me having blackouts several times a day and having to lie on the kitchen floor until my vision cleared and head stopped spinning, the GP agreed to cease the Morphine. He put me onto an increased dose of Tramadol, adding a slow release version morning and night in addition to fast acting four times a day.

My physical recovery had been continuing despite the ‘episodes’, albeit slower than it should have. Mid October I even baby-sat a friend’s three-year-old boy for half a day. Despite a very active few hours, I felt great and was really pleased at how well I’d managed (as well as said boy child surviving intact). Finger painting, decorating a robot helmet, being chased around the house by child wearing robot helmet, reading; all this was within my capabilities and it was marvelous.

The next day however, in the kitchen at home, I stood up after retrieving something from the fridge and my head spun, the world began to disappear as darkness clouded my vision and like so many unfortunate women in the movies, I swooned. I felt control of my limbs flee and wondered, as I begun to slide to the floor, if I could protect my head from any impact. Jason, also in the kitchen saw that I was not well and grabbed me around the waist, supporting me as my strength vanished. Each blink of my eyes showed a darkening room as I sagged, a dead weight in his arms. Blackness followed.

After only minutes, blurry vision was restored and Jason half dragged, half directed me to the lounge. I lay my face gratefully against the cushions, relaxing knowing it was safe now to succumb. Lying there, weakened, I became aware that my left arm was behaving oddly; bent forcefully at the elbow, tucked against my chest and fingers curled tightly. When it began to twitch in spasm, I felt a flicker of fear at the familiarity of these symptoms – exactly like when I had a stroke in 2007.

As quickly as the fear rose, I stamped my reaction down, seeing no good purpose in it. I did however mention the symptoms to Jason and we concluded it was just a response to the funny ‘episode’ I’d just had. We both know that anything that challenges me physically can see a return of the weakness on my left side. Later when I began moving about, I was disappointed to find I also had developed a pronounced limp, all the joints of my leg were locked up and my hip swung forward in an uncontrolled bowing movement. But again, we put it down to fatigue and went about our day.

We have talked about that day since and realised that the stroke of 2007, changed so much for us both, we have a new sense of ‘normal’. With brain injury so many things can impact brain and body functioning, a late night, too much noise, a head cold, over exercising; all this and so much more can strip me of my strength, coordination and endurance. A recurrence of weakness and fatigue is the new normal.

When the deficits had not resolved after a few days, I saw my doctor who upon physical assessment confirmed that I was presenting with hemiparesis (weakness or paralysis affecting one side of the body) and that my hip flexor in particular, was not switching on. His initial thoughts were that I had experienced a severe loss of blood pressure and had extended that by not fainting (laying down immediately) and may have triggered a vasospasm* in my brain. In short – I may have had another stroke.

He promptly sent me to the hospital Emergency Department (ED) with a letter requesting an urgent MRI. Alice Springs Hospital had only just installed an MRI machine in the previous six months and rumor had it that the waiting list was already quite long.

I waited three hours to be seen but once the doctors examined me and took my history, there was an increasing sense of urgency on their behalf. They contacted the Neurosurgery Unit at the Royal Adelaide Hospital who asked them to perform a CT Angiogram to ensure the aneurysm clip installed in May was still in place and, there were no brain bleeds. This was done and thankfully all was clear. I was however admitted to hospital as the doctors felt I still needed the MRI and access to rehabilitation services.

The following morning, as Jason arrived with a change of clothes for me, two staff appeared at the end of my bed and following a rushed introduction, my impression was that one was a doctor, the other a student doctor; the Saturday morning ‘B team’, a friend would later call them. They examined me, in a perfunctory manner, noted the CT was clear and advised I would not be having an MRI, as they felt the CT was sufficient. Granted, I was a tad sleep deprived but I recall thinking how only an MRI would clearly show the deep structures of the brain (such as) where my first stroke occured but okay.

They then inquired as to my walking stability and I informed them nothing had changed overnight. They had me walk for them; my glamorous hospital gown trailing upon the ground, comically oversized. I took four wobbly, slow steps and they stopped me; four steps, I kid you not. That was the extent of their walking and stability ‘assessment’.   For goodness sake, they couldn’t even see my legs in order to assess functioning. I wobbled back to the bed as the doctor announced in a dismissive tone, “Oh well, you don’t really need rehab do you, I mean you’ve had a stroke before so you know what to do”. “Yes, get the hell out of this hospital”, I thought as my eyebrows climbed their way towards my hairline.

I confirmed they were saying there would be no MRI or rehab support (the reasons I was admitted) and they left (without waiting to see if I would stay or go). My decision was a quick one; I was already feeling weaker from a day sitting around the hospital instead of doing as much as possible for myself at home. If there was to be no support or further tests, there was zero point in staying.

I returned home no better and without answers.

My physical weakness worsened and the rate of the episodes of passing out increased dramatically.  This state of affairs continued for some time and to be honest, I struggled to maintain my optimism, finding the idea of further brain problems emotional paralysing. Living with worsening episodes, we nicknamed ‘brown-outs’, slipping into near unconsciousness up to four times a day, with the only explanation being “something was going on in my brain” (as my GP put it). I became so unwell I stopped being able to do almost anything.

This was a difficult period for us and we largely kept things to ourselves as we simply had no idea what we were facing. My mind was filled with terror at the prospect of new brain damage or neurological deficits and my world contracted until I had to schedule my entire day around the recurring episodes. My mental health at the time deteriorated, and my physical recovery quickly went with it.

Then I had an episode in public and things escalated quickly. Whilst getting groceries with Jason at ‘Woolies’ one afternoon, I began to feel unwell, sounds and colours distorted, becoming harsher, crashing upon my mind like storm churned waves; thinking became difficult as dimness crept slowly into my peripheral vision. Feeling as though my mind was shutting down, I didn’t reach for Jason or utter a word. Backing slowly, groping blindly for purchase, I bumped into the shelves of the cleaning products isle and with a sense of self-protection used them to ease my body to the floor.

I lost touch with time and in the haze that was now my mind’s workings, there were no thoughts of embarrassment or concern, I merely waited the event out, some primal part of me knowing it would pass soon and I was safe, and that that was the only thing that mattered.

Slowly, I returned to the world around me, to see Jason looking down at me, asking if I was okay? He helped me to my feet and shepherded me to the front of the store. We made our way to the small food court and I rested on a bench seat as Jason got me some water. As my head cleared, I tried to reach for the water bottle on the table directly in front of me. Nothing happened. My arms and top half of my body wouldn’t move, I felt as though I was made of molded plastic with no moving parts. I tried and failed to move my arm again and felt a flash of terror. ‘I’m having a stroke’, I thought, the words loud in my mind. “I can’t move my arms,” I told Jason. He looked at me seemingly confused. Then I said words no one has ever heard me say and they lit a fire under him, sending him into immediate action – “I think I need to go to hospital”.

Jason was on his feet and at my side instantly helping me to lie down. As he turned to get his phone, a police officer walked by and I heard Jason, his voice oddly strained saying, “My wife may be having a stroke, can you call an ambulance?” The officer complied and only a short time later one arrived and I was rushed into a high dependency bed in the Emergency Department. By the time I arrived, I could move my arms and body and was feeling okay but had a ‘brown out’ episode in front of the doctor a short while later. It seemed that whatever was wrong with me was escalating.

This time when admitted to the hospital, I was taken seriously and kept in for four days whilst the Alice Springs medical team liaised closely with the Neurology Department at the Royal Adelaide Hospital and eventually figured out what was happening to me – it was a severe drug interaction.

My doctor had put me onto a new pain medication (Tramadol), both an acute (every 4 hour dose) and a longer acting slow release dose. Initially, I was taking long-acting Morphine with Tramadol throughout the day, but my doctor (not realising a drug interaction was occurring) thought the morphine was causing my blood pressure to drop too low (causing my first few episodes). Thus he changed the morphine to the slow-release Tramadol and this is when I really started to have problems. Tramadol, when combined with a particular nerve pain medication (I have been on for years for a spinal nerve injury) can cause Serotonin Toxicity. Serotonin toxicity or syndrome severely affects muscle function, disrupts signals from the brain to the rest of the body, causes seizures, serious mental health imbalances and the nervous system ceases to work properly. If left untreated it can lead to death. This interaction was responsible for all my symptoms, including the hemiparesis. These medications should not be prescribed together.

After reviewing my medication log and diary of events, we could see a correlation between a worsening of my symptoms with every increase or change in this medication. The cure – stop taking it but gradually, as the serotonin toxicity worsens with every change in medication dose, even a reduction.

The next month was dreadful as every time I dropped the dose, the side effects increased dramatically, leading to more episodes of dizziness and passing out and many other unpleasant side effects. Each time I dropped the dose, I would have one to two days whereby I lost control of my body and spent most of the time resting on the couch, feeling horrible whilst knowing that ultimately this was the path to regaining my health and sanity. My mood throughout the Serotonin Toxicity was nothing short of feral and my cravings for chocolate took on an obsessive trend. I joked (later) that for Jason, coming home from work was akin to opening the door and being greeted by a large and mightily unhappy Rottweiler dog. His only path to safety lay in running into the lounge, throwing a bag of Cherry Ripes at me and running to the other end of the house until Rottweiler Veraina slipped into a chocolate induced, friendlier mood.

I am happy to say that we successfully navigated this treacherous period and I begun to recover. The doctors at the hospital were pleased with my commitment to reducing the drug dose (as many people stop reducing once their symptoms worsen).  By Christmas I was only having the occasional dizzy spell with no full-blown episodes and I begun to be able to do more. All that said though, it would take another two months before I felt recovered.

It took me a long time to regain my post operative recovery momentum after such a dreadful complication and I was angry at my GP for quite some time.  The only good to have come of the whole mess, is that he now knows a lot more about checking possible interactions to the medications he prescribes.  I just wish I hadn’t had to be the ‘crash-test’ dummy!

*Cerebral vasospasm is narrowing of a cerebral blood vessel and causes reduced blood flow, which may lead to delayed ischemic deficit and cerebral infarction if left untreated.

 

Sensory Overload

I discovered a great clip on sensory overload whilst reading another blogger’s experience of stroke.  She suffers from sensory overload, just as I did and still do to a lessor extent.  I simply had to share it!  I wish I had seen this shortly after my stroke, as it would have helped me better communicate my reality.  As it was, the best description I came up with was imagine you are watching TV and just doing that requires a lot of concentration, then imagine someone is yelling directly into your ear at the same time.  That is what it feels like to me when someone wants me to listen to what they are saying whilst there is a television or radio on or some other noise.  It’s impossible.

This clip from the UK Autism Society captures beautifully what sensory overload sounds and looks like to sufferers.  I had to look away and cover my ears a couple of times whilst watching it.

https://www.youtube.com/watch?v=ERGPEKm8qSE&feature=youtu.be

If you watch the clip, try imagining what going into a shopping centre or supermarket is like for anyone experiencing this condition.  Post stroke when I started going to the supermarket, when I looked at the shelves, all I saw was a mass of colours and I was unable to distinguish between products or brands.  It was exhausting.  Occasionally now, when I am particularly tired, I still have to ask Jason for assistance, as I can’t ‘see’ what I’m looking for.  I describe the product in general terms and poor Jase is left to see if he can find it based on my vague description.  I have to say though, he has become adept at this now.

 

 

The Results Are In…Rehabilitation Assessments

I have been somewhat vague about the outcome of my assessment in the rehabilitation ward in hospital.  Now that we are home and I have a better idea of what I am dealing with, I feel able to write about it.

The surgery itself appears successful and was without incident, for which I am incredibly grateful.  I have dissolvable stitches rather than staples and Dr. Harding managed to save most of my fringe (which is great given I had no idea the incision would go all the way to my forehead!).

I have not suffered any injury related to a bleed or incident during surgery but the effect of having surgery on my brain has left me with a significant escalation of my prior stroke deficits.  These deficits can recur at times when I am unwell or have been overdoing things and it is easy to understand why they would reappear now.  Admittedly, going in, I wasn’t thinking of this as a potential consequence because there were so many other scarier ones to ponder.  I have however been disappointed to see just how poorly the left side of my body is working. Some of the tests for hand movement produced results similar to the function I had in the first year after the stroke.

It was due to this increase in deficits that I was transferred to the rehabilitation ward.

Once the physiotherapists started getting me up for walks and testing my balance, I quickly became aware that all was not quite as it had been prior to the operation.  After further assessment by the Speech Pathologists and Occupational Therapist, I knew what I was facing.

The entire left side is affected including my face and mouth, affecting speech, chewing and swallowing food. My hand is weaker and the fingers are curling and over-gripping items and when used for a continuous period, they curl up and become useless. My arm needs to be consciously moved first thing in the morning or it just hangs there doing nothing. My leg fatigues easily and I need to concentrate to stop my knee from snapping back in an uncontrolled manner with each step, while the foot turns inward and the toes curl up whenever I attempt something ‘strenuous’.  I am also very sensitive to noise and simply cannot concentrate if a TV is on or there is some other persistent noise.

One deciding factor for Dr. Harding as to which side to approach the aneurysm, was that I already had a stroke affected side thus if any brain damage were to occurred during the op, it would be preferable for it to affect my already affected side; thus the right-sided approach.  This was a sound decision to my mind prior and remains so now.   No damage occurred during surgery but my brain has experienced a trauma and as a result, I have an escalation in the severity of the previous stroke related problems.

Once the physios begin working with me, they also identify a significant issue with balance (umm, actually, I probably did that myself when I realised I couldn’t stand up without nearly falling over!). My brain’s vestibular* system is not working properly (another stroke legacy, as are my proprioception deficits.  I had a brainstem stroke which causes more ‘global’ impacts upon the brain.).  This makes me unsteady on my feet, incredibly dizzy and frequently nauseous. The physios soon work out that they need to be holding a spew bag whenever they have me doing head moving exercises. I will concede it has been amusing to see how fast they can move once I start retching! I tease them thusly, “Ah, Physios, they talk big and like to push people’s limits but hate being vomited on.”

Lastly, I am sent to the Ophthalmologist (eye doctor) to check my vision, as it hasn’t improved as everyone said it would.  Initially my surgeon said the double vision I am experiencing was likely due to bruising to the eye muscles from when they drilled through the skull close by.  At the two-week mark there has been no improvement and I still have to wear a patch over my eye to enable me to see normally. Without the patch, I quickly become disoriented and dizzy whenever I move or look around too much.

The Rehabilitation Physician decides as a precaution to have my eyes looked at because my limited vision is impacting my ability to walk and exercise freely.  One lunch time I am escorted out of the hospital and walk over to the Specialists Centre next door. I sit in the waiting room in a posh building, feeling somewhat self-conscious about the bright pink slippers adorning my feet, but soon forget the slippers as a man near me attempts to whisper to his female companion, “Look, she’s got a big scar on her head.”  Awesome.  I silently urge the eye doc to call me in.

Soon enough I am in the doctor’s office having been taken through some preliminary vision checks and she is now covering and uncovering one eye and studying the movements of my eyes. Without pretense, she tells me I have “What we call, fourth nerve palsy.” She then proceeds to explain in detail what she suspects may have happened and the recovery process.

The fourth nerve is a very thin cranial nerve and it could have been stretched or affected in some way inadvertently during surgery. If this is the case, it could take 4 to 6 month to recover. If it doesn’t recover in that time, they can give me special ‘prism’ glasses to help with the double vision and if at the 12 month mark it is still a problem, they will recommend surgery to fix it.  A bit stunned, I ask her to please write the name of it down for me.

The doctor then schedules a follow-up appointment in 2 days time to fully assess my visual field. These tests show I have lost some of the peripheral vision in the right eye. I will not be allowed to drive until all symptoms have resolved. The Ophthalmologist also now thinks the third and sixth nerves are somewhat compromised and she hopes it is from swelling post-op and that my vision will improve as the swelling resolves.

In the meantime, I have to wear the patch and I can leave it on the right eye as this is the weak eye and trying to force it work too much is counterproductive. She also tells me that it won’t weaken the eye.  Lastly, she tells me I probably will not be able to read for longer than 10 minutes at a time and may want to give it up for a little while, as it may become a source of frustration.  She’s right!

I also then have an assessment with people from the Guide Dog Association arranged by the OT at rehab. They go through elaborate testing that mostly replicates the results of the Ophthalmologist but with less skill and accuracy.  I found the entire thing to be mostly a waste of time. I had been expecting some assistance in mobility and how to navigate the world with half my usual vision but did not receive anything other than, “Have someone with you when you go walking.”  Only later do I learn that the second person present during the assessment was a mobility officer. This person said nothing the entire time they were with me. I’m still a bit cranky about it!  They did however give me exercises to strengthen the eye with the warning they would be challenging and are likely to bring on migraines.

So I came away from all the testing and assessment feeling somewhat deflated. The eye thing took me completely by surprise and when I finally told Jase about it, I burst into tears. I felt overwhelmed again as the list of deficits kept growing but the loss (even temporarily) of my vision was hugely distressing. Jason for his part was rock solid and told me without hesitation that it would be the swelling and once that went away my eye would be back to normal. I clung to his words as though they were a life raft in the sea of my fears. I have since come to believe this for myself as my vision has begun incremental improvements.

I eventually decide whilst still in hospital that I’m not going to worry too much about it all because:  a) I am recovering from brain surgery and have been really unwell; b) I need to put my energy into recovery;  c) I have the opportunity for rehab support; and lastly, d) I have recovered from most of these things before and if I have to, will again.

The extent of my ‘deficits’ may surprise anyone who has seen me in the last few weeks and it reminds me that when I had the stroke, I worked hard to remedy those aspects that were most noticeable and developed the habit of ‘hiding’ my deficits. I became experienced at adapting around them to the point that even health professionals couldn’t tell how greatly impacted I was without undertaking an assessment. This helped me in my recovery to a point and has apparently become an ingrained habit.  Hiding however, hasn’t helped me get the support I need and I have been overlooked in the past for rehab because I appeared to be managing so well. I know I am a perfectionist and an A-type personality and those things give me the drive and determination to succeed but they sometimes also prevent me from acknowledging how much of a load I am carrying. Thus I share this with you now. The surgery went fine but it has left me with some work to do.

 

*The body maintains balance with sensory information from three systems: vision, proprioception (touch sensors in the feet, trunk, and spine) and vestibular system (inner ear). Sensory input from these three systems is integrated and processed by the brainstem. In response, feedback messages are sent to the eyes to help maintain steady vision and to the muscles to help maintain posture and balance.

See more at: http://vestibular.org/node/2#sthash.Swf7v1lF.dpuf

 

 

 

 

Laughter In The Face of Practicality

Warning – Organ Donation topic. May upset some readers – did you read that mother??

Was talking with a friend yesterday and I mentioned I was finalising the paper work to donate my brain to research in the event of my death – you know, when I’m 100.  I explained that due to having had a stoke and two brain aneurysms, the Brain Bank (seriously, that’s what it’s called) have said they are likely to keep my brain in tact, should they get it.  Apparently, most brains are sliced up and distributed to a number of researchers.  I commented that they probably would be interested to see the well worn pathways of my habitual errors.  My friend said they’d probably be interested to see the size of the area responsible for resilience.  We joked then, that part would probably still be pulsing even in its storage tank.  We thought this was very amusing.