Rehab Reverberation

I’ve seen such an improvement in my ability to exercise in the last few months and at six and a half months post-op; I’m feeling remarkably able bodied. The comparison between how I felt after the first craniotomy and this one is telling and it is only now that I truly appreciate how unwell I was for the two years following the first surgery in 2014. I had been reduced to managing my entire life around debilitating head pain and migraines with little relief in sight. Every time I attempted to exercise, I found I could only manage short (10 minutes) sessions and it is impossible to build yourself up with so little exercise tolerance. I would jump on the treadmill and despite not going at it too hard, my shoulder and neck muscles would tighten then pull on my jaw and scalp muscles until the sore spots on my skull (where the metal brackets and screws were) became aggravated, triggering a migraine that would knock me out for up to three days. It got to the point where just thinking about exercising became demoralising, not a good thing for anyone, yet alone someone trying to regain physical strength and function.

Since having the metal removed from my skull, that cycle has mercifully been broken and I have found myself willing and able to exercise again.

So it is that I recently had a review with my rehabilitation physical therapist (that’s what they call them here in the US; at home they are called physiotherapists).   I have been working on strengthening my legs and getting all my muscles groups switching on and working properly. This takes a while as the first few weeks of doing the specified exercises, you are just reconnecting your brain and the muscles and reminding them of how to work, eventually they start to switch on at the right time and then the exercises work on strength and coordination. It’s a process I have been through a few too many times for one lifetime but it has taught me to have patience with the process.

I have also worked on my overall fitness as after the stroke and now two brain surgeries close together, I have struggled to re-achieve cardio fitness, a fact my resting heartbeat has screamed for years, as it never drops under 90 beats per minute (unless I’m meditating).  Fitness has been a much-cherished goal but it has eluded me for a long, long time and I had, in fact, begun to give up hope of ever achieving it. Due to the physical deficits inflicted by the stroke and then brain surgery, I have to work ever day continuing to exercise and practice motor skills I initially lost but have regained. If I stop, it doesn’t take long for the deficits to worsen.

I am nine years out from a brain stem stroke (basal ganglia) and have worked harder than I ever imagined I could to regain as much function as possible, to the point now that on my good days even experienced Neurologists have difficulty picking the signs (my ‘tells’ I call them); those sneaky little weaknesses I can’t conceal. Add two spinal injuries (lumbar) and surgeries and really, it’s a miracle I can even walk.  What can I say? I’m stubborn. I’ve also experienced Jason’s idea of motor- sports-racing wheelchair pushing and I am not doing it again!

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At the recent rehabilitation review, I was pleasantly surprised to see my therapist both impressed and a little shocked at some of my achievements. Okay, so was I but it’s what I’ve been working so hard at for months. I obediently reported my status with the leg exercises I’ve been doing and the exciting fact that I have dramatically increased my treadmill speed, added an incline and am routinely doing 30 minutes a day.   So it was straight into the walking speed test to judge the results of this effort.   Whilst only a short timed walk from one side of the gym to the other at the fastest but safest speed I could manage, the improvement was noticeable immediately. As the therapist compared my new time to the old and looked up the average speed per age numbers, she turned to me with surprise on her face, and said, “You have increased your walking speed significantly and just walked at the average speed for your age group”.  I haven’t been able to do that in decades!   She kindly added, “Given all you have been through, achieving that is remarkable and a sign of the effort you’re putting in”.

I’ve been going through a bit of a rough patch emotionally the past two months but hearing this was like a balm for my worries. Sitting perched on the edge of an exercise table, I felt myself sit a little straighter, a grin slowly worked its way onto my face. We sat, looking at one another for a moment, a sense of shared camaraderie and pride in these achievements; then it was onto the rest of the review. That’s the cycle of rehab: test, find the weaknesses, set exercises, do exercises, review, momentarily celebrate any improvement, and then repeat with more challenging tests and exercises. Victory is often times a very short-lived thing in the rehab gym but gee it feels good.

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.

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.

 

Learning Through Pain

I woke this morning with a headache, a seemingly innocuous event in itself except I have not woken with pain in my head for nearly two weeks now.  The first few days without pain as the first thing to register in my early morning grogginess, were treated with a wary suspicion, “Will it last?” I’d ask myself. But the glorious pain-free awakenings continued and soon became the welcomed next stage of recovery.  Oh the relief of waking, stretching and sighing as no pain haunted my skull first thing.  After close to four months of constant headaches, this was a much-appreciated respite.

This morning though, I woke with pain in my head but I still took a moment to stretch and give the darn thing a chance to leave. Propped on the edge of the bed the pain increased and extended into the bones around my right eye.  As soon as this happened, I realised I haven’t had bad pain around my eye for a little while either.  It still aches some days and I cannot tolerate any pressure in the area, but it has been improving.   In order to recognise this subtle improvement though, I needed perspective and this is what this morning’s strong pain gave me.

I medicate myself appropriately and begin attending to the important activities of the morning namely opening up the house to capture the beautiful desert morning air and making coffee.  As I move about these tasks, I ponder the pain.  I am no stranger to pain particularly after my spinal injuries and rehab where I was treated by a pain specialist and undertook pain management lessons to learn how to live with debilitating nerve pain.  The pain I have had post brain surgery has persisted for longer than I thought it would and at an intensity that has surprised me.  A bad headache debilitates my capacity to think as well as move, prevents me from reading, watching television or even listening to music and can with persistence leave me lying upon the bed with ice packs fore and aft.   I recall reading that it takes most people up to a year to feel they are returned to their pre-op ‘normal’ and that many people continue to have headaches well up to six months.  I had forgotten this and listened when my surgeon told me the headaches would last only days or weeks.  Surgeons!  I know better than to listen to surgeons about recovery! They are about as reliable as used cars sales people when it comes to recovery time.

As I think about this morning’s pain, I use the mindfulness approach to tune into and distinguish differences in sensation. In using this approach to pain the goal is to observe it, take a breath when it strikes but not react emotionally nor even physically. The goal is to distance oneself from the pain and what we tell ourselves about it and to recognise pain simply as sensation.  Through this we also acknowledge that pain is there for a reason and it is important when recovering from serious surgery or injury, that we learn when to heed the call for rest and when it is ok to work through it.  This is an exceptionally fine line and in order to navigate it, we must be tuned in to our bodies and understand the message the pain in sending.  This helps prevent one becoming distressed by and merely reacting to pain. It takes practice but it helps enormously, when you remember to do it. I have been reconnecting with this practice (thanks to a reminder from a friend) so this morning whilst I took the appropriated pain medication; I also explored the sensations and refrained from telling myself negative things about it.

I have over the past weeks clearly identified the variety of headaches I get and learnt some of the triggers for them, enabling me to better manage or even delay them. I still have the pain and it still causes me to modify my behavior when it strikes hard but I don’t worry about what it might mean, don’t feel sad or down about it. I’ll admit to occasionally still feeling frustrated that I can’t just do what I wish to without planning around this companion but largely, I accept that it is a part of this journey and for the time being, me.

 

 

 

 

 

Nine Weeks

Today is nine weeks since I found out my brain aneurysm had grown and started my trip down this rabbit hole.  So much has happened in that time and I feel as though I have travelled far.  In an attempt to help me remember where I have been I began jotting a quick daily summary because though I am in hospital my days are deceptively busy, at least it feels like it to my poor ole brain!

Some of today’s highlights include: accidentally pulling out a wound stitch with my comb; enjoying a free hand massage; increasing the intensity of my rehab exercises (by the physio not me!); watching a group of brightly coloured parrots hang out on the balcony on the building next-door; revelling in a visit from a dear friend from Melbourne; assessment by an OT; starting yet another pain management drug; and taking my first unescorted walk from the gym to my room (all of 15 steps but woo-hoo all the same).  All in all a good day.

My world is quite small at the moment but with each day and some effort, it increases a little.  In the meantime, I will continue to try to find those moments that remind me of what it is I am working towards – freedom, independence, home and health.

 

 

Recovery Dodge-Ball

Warning for my readers:  From time to time there will be whining on this blog, times when I need to express my feelings about the bad days when I feel low, hopeless even. I make no apologies for this.

It has always annoyed me when I have gone in search of motivation for other recoveries, too many so-called ‘motivational speakers’, fall back on the ‘Just Do It’ mentality when things get challenging, telling people to harden up and push through it.  I know from experience that when I’m looking for motivation to help me through difficulty, I want to know the how of it.  Just telling me to work hard and just do it doesn’t give me anything to work with; this isn’t an ad, this is real life.

Sometimes good people behave badly and sometimes bad things happen to good people.  There isn’t always someone to blame, sometimes you just have to accept what you get and make the most of it, the best way you can.  Seeking wisdom from those whom have gone before is a natural instinct.  Please bear with me as I navigate the very real ups and downs that accompany recovery from a serious operation and the impacts it has on me, my family, my mental and physical wellbeing and my capacity for grace and humour.

9 June 2014