Out The Other Side

Firstly let me start with the reassurance that I am alive and well after my brain surgery. I am very conscious that it is now past the eight week mark and I am yet to write anything about it. I have been pondering how easy it was to write after the first operation compared to this time and it seems the main difference is pain management. I was in loads of pain last time and as many of you will understand, pain can serve well as a writer’s motivation. In all seriousness, the surgery went very well but I have been so high on pain medications that most tasks of ordinary life have been beyond me. I also find myself living with profound tiredness, leaving my day’s routine to mostly sleeping, couch rest and general zombie-like house wandering. Living the dream!

Fortunately, I have in the past week or so been able to reduce the number of lovely drugs needed to tame the pain so am beginning to have a few lucid moments. Now being one of them.

So a quick update; the surgeon was very pleased with how his work went; he was able to clip the original aneurysm and the second small one from the left hand side of my skull. img_4894He also reopened the incision from the previous surgery (right side), cleaned it up a bit, removed the hardware (metal brackets and screws) left to secure the skull flap whilst it healed and filled in a depression (possibly caused by muscle atrophy since the surgery) with bone cement.

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I had asked if he could do a facelift whilst he was at it, but alas, no. By removing the metal, we are hoping for a reduction in migraines, as it is the medical opinion here that they were likely a trigger. Unlike my doctor in Australia whose sage words were, “The migraines might just be the new you after surgery”. End of advice!

I can report several improvements already in this area, with the constant jaw pain I have had since the first surgery vanishing. Additionally, the tender spots where the metal was are no longer sore. Whilst I am still experiencing localised pain at the incision, I am hopeful that as it heals, there will be further improvement.

 

Now immediately after this op, I was apparently very ill upon waking and as my beloved and devoted husband tells me, “You were puking for hours”.   Thankfully I was so out of it I have absolutely no memory of this or of being in any pain for my entire six-day hospital stay. There are plenty of other things I also don’t remember but I’ll save that for later.

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I had a slightly longer than expected stay in hospital, largely due to having several strange episodes which were initially suspected strokes. They were not, happily, thankfully, get down on my knees and thank all deities, not. During these episodes my speech became garbled or I ceased being able to get my words out, then as speech returned, it was painfully slow and I had difficulty forming words. This is called aphasia and apraxia. I experienced something similar after my stroke in 2007 but not with the same intensity.

The first two times I had an episode, the staff called a Stroke Code, which involved a team of health professionals rushing to my room, asking loads of questions, whilst taking blood, physically examining me, ordering tests and rushing me to Imaging. You may think that sounds awful, perhaps even a little frightening, and yes, had I not been stoned out of my head on pain medications, it might have been. In less than 30 minutes, I was assessed, put through the CAT scan and returned to my room, I also had an MRI. This hospital takes the possibility of stroke seriously, as I wish all hospitals would.

img_4817The initial diagnoses was that swelling near the speech centre of my brain was causing seizures, so I was then connected to an EEG machine overnight to see if they could ‘capture’ evidence of one. I did have an episode whilst hooked up but the EEG didn’t capture anything. This meant it was either migraine related or the seizure activity was too deep within my brain for the EEG to detect; (I know, I know, my head’s too dense for the machine to penetrate). As a precaution I am on anti-seizure medications for a few months. As for the other possible explanation of migraine – the surgery may have set off a new type of migraine symptom for me. I have continued to have a couple of episodes a week since coming home but we are hopeful it will resolve itself as I heal and my brain stops having a tantrum at being interfered with. I see my Neurologist this week when I am sure this will be discussed.

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Jason has been super busy looking after me, managing my medications routine and generally keeping me on track. My mum has come over from Australia to help out and allow Jason to return to work. We were kept well fed by our community here using the Meal-Train website, which worked perfectly for our needs. My incisions are healing well, my pain is slowly lessening and I am beginning to do more. Both the surgery and recovery this time are 100 times better than my previous experience.

All in all, I received excellent care from the team at University of Colorado Hospital and much love and support from our families and friends.  I am extremely thankful.

Emotional Turbulence

With only two more sleeps to go, nervousness has reared its unpleasant head. Despite using the tools I have such as meditation, to keep it from becoming full-blown anxiety, I still have stomach butterflies appearing at frequent intervals (coupled with just a smidgen of nausea) and an almost overwhelming desire to RUN.

As much as I try to think about others in more difficult circumstances, in an attempt to tamp down these feelings with a wider perspective, I’m unable to shake a certain growing dread of what’s about to come.

Logical thoughts like ‘It’s for my benefit’ or ‘I need to do this’ are ringing empty today. I feel as though I’m about to walk through a door where I know I will experience pain and unpleasantness, but then step into the unknown. The only thing that I think I know about this mystery stage is that I will temporarily lose my independence (again) and will have to live each day in accordance with my body’s new limits and spend most of my time managing pain.

This is a difficult thing to walk into willingly but walk I must and deal with whatever comes, hopefully with some grace.  It helps to know that the people I care about and who love me are holding my hand and sending me uplifting thoughts.

Vulnerability and Connection

This thing, the human condition lets say, is a shared experience and opening up about my struggles often allows or encourages others to do the same.  In this way, I believe we help one another to carry the burden, to understand we are not alone in our travails and that there is hope for better days.

Exposing oneself is not an easy thing to do but my experience has shown that being vulnerable in difficult times, opening up about the things that frighten me, gives an opportunity for others to be kind, show unwavering support, surprise me with the depth of their love or friendship and to remind me there is grace to be had, there are safe places to reside when the pain becomes too strong and even, occasionally, laughter still to be shared.

I am astounded by the cocoon of wellbeing I have found myself woven tightly within by people far and near, those known for years (even decades for some) and those only recently met.

To be filled with gratitude at a time when I thought I’d be terrified is a marvellous thing.

Thank you.

Once more unto the breach, dear friends, once more.

I have gone over and over it in my head and simply cannot find a clever way of saying this or even a way to soften the blow (so to speak) but it turns out I need to have a second brain surgery.

Bugger (plus a string of expletives, if you are anything like me).

Bear with me whilst I explain how this has come to be.

In Jan 2015, I had my post-operative cerebral angiogram and my surgeon told me (over the phone) that a tiny (1mm) weak spot had pushed out near the clipped aneurysm and that whilst it wasn’t a concern, it would need to be monitored.  When I met with her next, I asked her to show me where the new weak spot was and like all surgeons she drew a simplistic representation of the artery, the clipped aneurysm and this new small bulge.  On the drawing, the new bulge was on the opposite side of the artery to the clipped aneurysm and she explained that treating the aneurysm altered the blood flow in that area and this can sometimes lead to other weak spots showing up.   Unexpected but okay; in effect this left me with two small aneurysm that still required annual review.

Having moved to Denver in the United States in August, I had to establish a new cadre of health professionals to manage my ongoing care and just before Christmas last, I saw a Neurosurgeon for my first review.  Before I could meet with him, I needed another brain scan.   Once at the appointment he informed me that my Australian surgeon missed part of the original aneurysm with the clip.  Frickin’ awesome says I.  The imaging shows it may be as much as half the original aneurysm.

Now you might be thinking how did my Australian surgeon miss seeing that on my post-operative scan.  The answer is that she didn’t.  We have since gained access to the report of this scan where it states that as much as half of the aneurysm remained unclipped.   She lied to me.  It’s that simple.  She lied knowing I was coming to the states, where they would see it and deal with it.

Every time I think I have worked through my anger about this, it seems to rise up again, out of the pit of my stomach, bitter and all consuming.

So there Jason and I are, sitting in the doctors office after all of four months in Denver, expecting to be told nothing more than “Everything’s fine, see you in 12 months” but no, the doctor starts talking about surgery to fix the original aneurysm and “whilst he’s in there” clip the other small one.  As he detailed the need to go in from the other side to the previous surgery, my mind was racing.  I recall looking at Jason with nothing less than shock on my face only to see similar signs upon his.

For those of you whom have never met my husband, this is a man whom upon watching a snake rise up out of the umbrella hole of our table one night on our honeymoon, slowly raised a single eyebrow in response!  For me to see shock on his face meant there was a serious disturbance in the force that day.

Thankfully all my experience with receiving unpleasant health news kicked in and I found myself able to begin asking questions.  I managed to explain to the doctor that I was nearly two years out from the first brain surgery and was still dealing with the consequence of that – double vision, head pain from the metal and seemingly unrelenting migraines.  Thankfully, he heard my concern and disbelief and stopped talking.  He gently felt my old surgical site and with a deftness of hand that I still find reassuring assessed the procedure I had undergone, explained why poorly placed metal screws and brackets were likely causing me problems and then explained how he doesn’t use that procedure any more, having developed his own, less physically traumatic approach.  His procedure requires a smaller skull hole, substantially less cutting of the jaw muscle (which means less of my face peeled away from my skull and reattached) and fewer metal brackets externally.  He also volunteered to remove as much of the metal in my head from the last operation as he can.  At a follow up consult, both the surgeon and his resident felt my head looking for these brackets and were surprised that all of them were so exposed, as apparently, here, they bury the metal as deeply as they can under muscle so it can’t be felt from the surface.  All of the metal in my skull can be felt easily and it continues to be tender to the touch two years out.  Grrrr.

Whilst all his talk of a better surgical technique was nice, Jason and I still left the appointment largely in shock.  Neither of us was expecting to hear that I needed more surgery, let alone due to my previous surgeon’s incompetence!

If I’m honest after a couple of days pondered his suggestion, I found myself shelving it, in what I now recognise as denial.  I simply could not face even the thought of going through the surgery again.  I have had such a difficult recovery, experienced so much pain, and had been ignored by my Australian surgeon who refused point blank to see any connection between the surgery and my ongoing issues.  As much as I try to stay upbeat, managing things as they come, I have suffered greatly these past two years and honestly, could not find it within myself to do it again.  My resilience reserves are frankly depleted.

After some blissful self-imposed ignorance, I decided I needed a second opinion, and met with another Neurosurgeon, one specialising in vascular aneurysm treatment (non-surgical) but can do clipping as well.  After a detailed discussion of the options, including not doing anything right now, he agreed with the first doctor that surgery was the best treatment option and it was warranted sooner rather than later.   Due to me still being young (ish), they know over time the aneurysm will continue to grow and waiting just invites the opportunity for a brain bleed to occur.  We were very somber walking out of this appointment.

It was at this point that I collapsed in upon myself emotionally.  Jason seeing my misery, wisely reached out to the counselors provided via his employer and I grudgingly met with one of their Psychologist. I won’t detail everything we went through but suffice to say, she validated my experience and my grief and basically gave me permission to stay in my sadness and anger for a while in order to process it.  The thing about being the type of person, who pushes through difficulty and ‘bounces back’ from calamity, is you begin to expect an awful lot of yourself.  I took the time I needed to begin to come to terms with my fate.  It wasn’t easy and I am so grateful to Jason for being so gently with and kind to me during this time.  He gave me a safe place to be in the midst of my suffering.

After a while, I realised that in order to commit to surgery I needed more information.  I had to reassure myself that I would not have such a horrendous time.  My mind was full of all the poorly managed aspects of my post operative care last time; such as insufficient pain relief, being left vomiting for three days due to the pain, severe swelling and double vision, to name a few things.

We met with the first surgeon and a Resident, to go over everything and run a few (dozen) questions past him and eventually, grudgingly, agreed to schedule the surgery.  I go into hospital next month on Thursday July 21st.  Jason said my questioning of the surgeon was as though I was interviewing him for a job, and I guess I was.

On a couple of occasions, I had to provide context for my question as they looked at me as though I had sprouted a second head.  An example may be useful: With brain surgery it’s critical that they keep the patient’s blood pressure spot on, meaning there is enough blood circulating to keep the brain alive but its the minimum amount of blood flow they can achieve so that should there be a bleed during surgery, there is less blood flowing.  To monitor the BP this closely, they use arterial BP measuring which requires two very large needles to be inserted into the underside of the forearm into arteries.  It is a nasty procedure that results in some of the worst bruising I’ve ever had.   Just prior to going to theatre the anesthetist told me, he would put those needles in once I was unconscious.  That is standard practice.  Unfortunately, he was also a lying sack of s@i% and as soon as I was in position on the operating table, he grabbed my arm, slapped it vigorously and put the arterial needles in whilst I was wide-awake, no pre-op sedation, nothing, wide-awake.  It was excruciating and the pain was the last thing I experienced as they anesthetised me.  This may be why the brutality of that moment has stayed with me.

Back to the US, and I share this anecdote with my new doctor and as he and his resident exchanged glances, my surgeon reassured me that I would not be awake for that.  When we finally left him in peace, Jason commented that he thought they must think that medical care in Australia is barbaric.  Sadly, sometimes it is.

I’m happy to say that now for the most part I have moved through my sadness and fear.  We both still have moments where it all feels a bit too much but we have each other and now that we are reaching out and telling people, lots of moral support.  Being on the other side of the world away from everyone we know is adding its own stress.  That said our new friends here and work colleagues of Jason’s have already begun making sincere offers of assistance and his work’s admin team have been super helpful and are doing everything they can to support us.  One friend has set up a Meal Train web pigeon our behalf so people can volunteer to bring us a meal on a given day, which is reassuring in that I know I will get to see a vegetable occasionally in the first few weeks at home.  Also, my mum will be coming over shortly after the operation, once I’m home and need someone to help out.

Despite my reluctance to go through another craniotomy, I am very impressed with the surgeon here.  He is highly experienced and as mentioned earlier, has developed a less physically traumatic approach to the surgery.   He was very approachable and understanding of my concerns and from what we hear, is one of the best Neurosurgeons in the State, the guy other surgeons’ send their tricky cases to for care.  This very experienced doctor sat in front of me, for half an hour patiently answering every question I threw at him.  We are very optimistic of having a better outcome and easier recovery than last time.

 

Birthday Reflections

 

Light reflects off the vodka cocktail in my hand, the beat of jazz music pulses through me, fingers tapping in time with the drums, I am happy, I’m celebrating turning 45 and I am happy. I have a table full of new friends with me, watching incredible musicians generate a spell over a room crammed full of appreciative people, in a place I have never visited before and I feel good. I’m 45; wow! I think I’m officially pushing middle-aged now and like everyone before me, with our brains permanently set at 25, I do not feel ‘middle-aged’ or at least what I used to image middle-aged would feel like.

Caught up in the feel-good haze of this moment, I reflect a little, thinking of the last five years since I turned 40. Another of those milestone birthdays that in all honesty, I was grateful to reach. Having had a stroke at 36 and spending quite some time working to avoid another (sadly an all too common occurrence for stroke survivors), I do carry an appreciation for having lived and not having suffered further brain injury and deficits.

Living with an appreciation for living though has not been as simple as I might have thought. Daily living does take the shine off, further health issues have certainly given me moments where I’ve wanted the pain to end, wished for a different, dare I say, better, life. I am after all, only human. What I do though, is try to celebrate the things worthy of celebration, acknowledge the beauty and pain in life and tell those around me how much they mean to me, be it a thank you note, saying “I love you” or signing messages with xx (kisses), these small gestures help keep me connected and I hope ensures the people I care about, know it.

We celebrated my fortieth birthday in true Central Australian style, hiring a bus to transport my guests to Ooraminna Homestead, a real life cattle station a short ride out of town on rutted, rust red roads. There was so much rain that summer the ‘Red Centre’ was indeed quite green, full of new growth and abounding with wildlife. The road to the Homestead was so muddy, a backhoe was sent to greet the bus and lead us to our destination, ensuring a handy rescue should our vehicle become bogged. Friends old and new, local and distant congregated at the most perfect of venues, watched the sun set the surrounding rocks to flaming oranges and reds and set down on another brilliantly hot day in the desert.

I have such clear memories of that evening, surrounded by friends, many whom had traveled from interstate and whom upon meeting one another for the first time, kicked off new and lasting friendships amongst themselves. I could hardly wish for more.  I recall standing with a glass of champagne in hand, twirling slowly in the warm night air, music of my choosing playing in the background, looking upon the people around me and feeling blessed to be in such company and to have so many good people share in my celebration.

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I was happy and knowing it, I made my way to Jason’s side, looked up at him with gratitude and a big grin, and told him how happy he had made me by throwing such a wonderful party. We stood together for a short while, hand in hand, watching our mad-capped friends party.

To know, really know, when I am happy and to take a moment to dwell there is a gift of my post-stroke (and brain surgery) life.

Back in the jazz lounge, my mind gently wanders through the major events of the past few years. I am known to joke that each new year will finally be a ‘quiet’ year for us and whilst I often feel as though I am unable to participate in life as fully as I would like, the past five years do feel as though they have had more than enough excitement in them to last a while. Big picture, since I turned forty, Jason and I have had two interstate moves, Alice Springs to Canberra and back again and one international move, Australia to the USA. I have started 5 new jobs, earned promotions, dramatically increased the number of hours I can work per week and now await the approval of the US State Department for an American work permit; whilst setting up the foundations for freelance writing work.

I lived alone whilst Jason undertook a posting to Western Australia and had two surgeries in that time. Thankfully my mother was willing and able to stay a while and help nurse me back to health. A trip that would ultimately lead to her retiring upon returning to work and the realisation she didn’t want to be putting up with all the crap associated with working in community health at 74 years of age! Such things will happen after spending six weeks enjoying sunny days, afternoons in second hand book stores followed by coffee and a few laughs (or listening to me rant about the level sexism inherent in Australian culture). Perhaps not so much; but it came with the territory I’m afraid. Anyone remember what our first female Prime Minister had to contend with?

I do, however, digress.

In these past five years, I nursed our beloved cat of 15 years through her final months until her dignified end, under went brain surgery and labored through a long recovery, but not before planning and spending an entire month camping and four-wheel driving our way through the Kimberley region of far north WA with friends; an adventure never to be rivaled in my book.

Since turning forty, I have lived in four different houses, set them up and packed them down again and best of all I have met and made many new friends, whilst strengthening my existing relationships.

Life can be scary and sometimes a little too action packed for my liking but I do value the many new experiences I have had these past five years and as I turn and look at the women seated at the jazz lounge with me, sipping my cocktail, I smile to myself and wonder what the next five will bring me.

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Ready for the Next Five!

 

 

 

 

 

 

 

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.

 

Vaguely Human

I’ve been reflecting on how much better I have felt these past couple of weeks. I haven’t woken with a headache in a while and although I am still on slow release morphine morning and night, I can now go three hours each morning before needing any acute pain relief.  My use of Endone (more morphine) has all but ceased, leading to a clearing of my mind and lifting of paralysing lethargy.  I am beginning to feel much more like me again and perhaps even vaguely human!

Thanks to having more energy I can contribute around the house in a more meaningful way.  Jobs like un-stacking the dishwasher are now possible, as the intensity of the pain in my head when bending down has lessened greatly.

There are still mornings when I wake with swelling around my right eye but it generally resolves as I move about throughout the day.  The pesky double vision visits me most frequently at night when I am tired; and while my daytime vision is good, there are still limits on how long I can read or write, although it has increased much farther than the 10-minute mark of early days.  Jason knows it is past time for me to be in bed when he notices I am holding one eye closed while watching T.V.  It’s a ‘tell’ I hope to lose soon, although it does serve as a definitive signal of fatigue.

Driving has been restored to me with the okay from my doctor. I am sure you can understand if I take a moment to shout ‘Independence is mine’.  The timing was helpful as the financial pressure from me not bringing home any pay for five and half months was making taxis a luxury we could no longer support.  My first few outings, I was acutely aware of how long it had been since I drove and took it slow and very easy.  I can say happily that driving has become more natural again but as a precaution, I still take my time checking for traffic and ensuring my decisions are not rushed. Whenever I head out, I am thankful to live in a small town with small town traffic.

My head is clearing relative to the slow but steady reduction of pain meds and my doctor thinks I could be off everything by the end of the year.  Over coffee recently with a former boss, now friend, I was asked what am I working towards in the next few months and after a short pause I told her that, “I would very much like to enjoy a glass of champagne on Christmas Day (having not drunk alcohol since April) and another on New Years Eve so I can fondly say farewell to 2014”, a year that will now always be the year I had brain surgery. What’s that saying? What doesn’t kill you makes you stronger.  I think I must have that tattooed on my arse or somewhere else I can’t see, you know, like a birthmark.

I am noticing other improvements as the weeks slide by and am thankful that my hair has stopped falling out and breaking at the slightest touch. With hair long enough to get caught in my armpits (why did no one warn me when I said I’m growing my hair?).  Anyway, with long hair that continually shed, a house with all tile floors, it’s safe to say we’ve had Veraina tumble weeds rolling about the place. Thankfully it appears to have slowed.  I recall how freaked out I was when my hair was first washed after surgery (by a lovely nurse who regaled me with stories of the annual spiritual (and boozing) retreats she organises).  As she began rinsing my head a couple of clots of blood and hair came off from the points where they drill into your scalp to hold the head still during surgery. Ewww!! Even more came away when we combed it. I lost tons of hair in the first few months, thankfully not enough to be noticeable to others.  It was a result of the stress upon my body, the anaesthetic and other drugs etc.  My appointment with the hairdresser sadly had to be cancelled as my scalp and scar were still too tender but I think next month’s the charm. This is the longest break I think I’ve had from getting my hair coloured. It has proven a trifling entertainment to rediscover my natural colour.  It’s a little sparklier under bright lights than I remember.

So, as the improvements roll on through, I have enjoyed my first few days with pain-free hours, no icepack on the head for break through pain, no waking in the middle of the night because I’ve been resting on my scar for too long and no ice pick stabbing pains in my skull.  Yes, I still need to medicate when the headache seeps back in, to prevent it from becoming a migraine, but the intensity is nowhere near what it was.  I do still occasionally get the electric-spider-dance pain across my forehead but I have found rubbing the skin furiously works well in dealing with that. And thankfully, the whole ingrown hair torment seems resolved, although I have leant the important lesson of getting a promise from Jason before he ‘looks’ at my scar, that there will be no squeezing without explicit consent.

Speaking of scars, mine has healed remarkably well and with the hair growing back, it cannot be seen without close inspection. I had thought it would be visible should I have short hair again, but it wont.  My surgeon did an incredible job keeping the entire scar within my hairline.

In feeling more human I have had a tentative peek at a full recovery.  I can for the first time, see the end in sight.  Five months isn’t really a lot of time but being in pain and a drug fog, stumbling about trying to rehabilitate, it has at times certainly felt like a long time.

I read a passage today that spoke to me about dealing with adversity.

“Even the worse things can exude some lightness: Yes, this is terrible, this is not what I wanted, not what I’d hoped for, not what I’d worked for, maybe even what I feared. But also it’s not that bad. It is like a dream. It’s happening and not happening. Soon it will be in the past. So I can look at it differently, I don’t need to validate all these dire thoughts that only make matters worse. Maybe I don’t need to be so worked up about it. Maybe I can just figure out how to deal with it without that extra measure of anxiety and freak-out.” Training in Compassion by Norman Fischer

I certainly indulged in a fair bit of freak out in the beginning of this journey but in the end, despite brain surgery being the scariest thing I have faced, I turned up and did what I had to in order to keep living.  I worked hard at rehab, have struggled with the side effects of medicines but have, with lots of love and support begun to find my way out, my way out of the dream. The surgery is in the past as is most of the pain associated with it.  I can now turn and face the future while residing in the present; there is after all, still work to be done today, so I may reach my best ever recovery and future.