Treatment Affectionally Named ZAP-ZAP

I have been having Electroconvulsive Therapy (ECT) since late December last year to treat severe depression with suicidal ideation and not talking about it widely.   I have tried to put on a brave face and tell some of my closest friends and those we see regularly but have not broadcast the fact beyond that and I suddenly realise that is due to shame.

Yesterday I was reading Brené Brown’s ‘Daring Greatly’ when I read a chapter on shame, a compelling exploration of the topic and one that has enabled me to see my shame at my perceived health failings and need for seemingly extreme medical treatment.

As I have digested Brown’s research and conclusions, I find myself agreeing with her, shame is harmful to us and open, honest dialogue about shame itself and whatever we think is shameful is the best path forward for healing.

Those of you who know me, know I work as a health promotion professional and Lord help me, my last role was managing a suicide prevention team within a Mental Health Service.  Our job was to promote open discussion around mental health issues & good mental health practices, work to prevent suicides within the community and support the community when sadly, they did occur.  Depression and mental illness are not unknown to me.

I have personally experienced bouts of depression, usually following a serious health crisis, life alteration and restriction.  Not unreasonable you might say.  Fortunately, these bouts have all resolved thanks to psychotherapy and medication.  I have always been compliant in the application of these interventions and prided myself on doing the necessary ‘work’ to overcome the depression.  I wholeheartedly do not enjoy the smallness of the world when I am afflicted with depression.

This time the depression beat me, but it had an unfair advantage in the form of a medication whose worst known potential side effect is severe depression and suicidal thoughts.

Following brain surgery (to clip aneurysms) in 2016 I began experiencing strange episodes of lost speech and drowsiness.  They were seizures caused by a tiny bit of damage in one of my speech centres and did settle down a lot but not completely.   Working with my Seizure Neurologist I was using an ‘as needs’ medication whenever I felt a seizure coming on.

When we discovered I needed surgery on my spinal cord nerves, I spoke with the Neurologist about taking a preventative seizure medication so as to support my recovery not add to it.  She agreed and prescribed Keppra, a common anti-seizure medication.

It worked fine for preventing seizures but unfortunately had some nasty side effects on my mental health.  As my mental health declined, I consulted a Psychologist, then at her insistence, a Psychiatrist and took the medications he prescribed, whilst continuing with therapy.  When I began getting teary for no reason and having vivid visions of inflicting serious, if not deadly harm upon myself with kitchen knives, Jason insisted I go to the doctor and he came with me.  Once the doctor understood I was experiencing frightening, vivid, suicidal hallucinations, he was quickly on the phone to my Psychiatrist whom recommended putting me in hospital to keep me safe.

Not understanding what was awaiting me, we complied with the doctor’s request.  I’ll stop there for now on the back story of the depression as the experience of being admitted to the ‘Psych’ Ward is a whole other story!

I wanted today to admit to having ECT, to having severe depression and suicidal ideation as I believe we need to be as honest as we can about mental health issues and not drown in shame about them.

However, just writing about it makes me sad because I feel bad about dragging Jason through all this.  It’s been a really long, hard year for us and I can’t help feeling guilty about that.  Perhaps if I’d worked harder in therapy or recognised the warning signs sooner, been stronger, not needed the damn seizure medication or, hell not needed surgery, who knows…

Jason has been simply amazing through all of this and to be honest, I’m still alive because of him.  I just wish I hadn’t had to be reduced to such a low where nothing gave me pleasure, and life didn’t interest me.  I wish I didn’t feel shame at having to need such a seemingly radical medical treatment as ECT; a treatment that renders me near non-functional for days and days.  Leaves me making mistakes daily and wandering around in a near-permanent state of confusion.

An effective treatment that is lifting me out of the dark, restoring my spirit, allowing me to see clearly again so that whilst I can still feel my shame, guilt and sadness at all that has occurred, I also am starting to understand that I’m not to blame, neither is anyone suffering with depression; and it is suffering.  I recently said to my ECT doctor, “I don’t know where I’ve been”, referring to the past six months of my life; too which she replied, “Suffering is where, suffering”.

So, should you find yourself in distress or a perpetual state of sadness, please, please reach out to someone and get help.  I didn’t have the sense to recognise the danger I was in so had I not told my husband about the dangerous hallucinations and thoughts, I could have come to serious harm.  Mental illness can feel as though it still has a stigma attached to it, but you’d be surprised at how supportive and kind people can be and the health professionals working in this area are generally very caring.

As I improve, I realise I do not want to carry a bag full of negative emotions about the experience forward with me, thus I tell you all today where I’ve been recently and what I’ve had to do to get through it.  Thank you for taking the time to read this.

I think I can

Have you ever had to start an exercise regime or return to one after a break and found yourself lacking the motivation or inclination to do it? I had a horrible head cold last week and it had me on the couch for a good number of days and feeling sick for a good number more afterwards. In the lead up to this winter bug, I had been exercising nearly every day and was feeling great for it but then I got sick and the momentum broke.

Even after all my years of working at physical recoveries and developing a will to exercise, I still find myself each morning this past week wondering if today will be the day I get back into it – but I haven’t, despite the guilt inspiring self-talk and you know what, that’s normal.

Us humans are such creatures of habit yet we are also highly adaptable, we wouldn’t exist as a species if we were not but some habits (usually the healthiest ones) are harder to get back on track than others after a disruption of our routine.

Despite knowing all the benefits of returning to exercising, I have simply not been ready and thankfully after years of practice, I no longer have a melt-down thinking it’s the end of the world because I’m obviously NEVER going to exercise again because I’m too weak-willed. I am what I like to call a recovering perfectionist and life used to be quite black and white to my mind. I was, as my husband liked to say, an “all or nothing kinda girl”.

So if you also find yourself being internally berated, please try to breathe and take stock. You can do it; it just might take having a plan of attack rather than simply hoping you wake up one day with your exercise-will restored (or newly created).

As I have thought about my current break from exercise, I have tuned in to hear what my body has to say and initially, I was too tired after illness to jump straight back in and now after a longer break I am beginning to experience an increase in physical pain and discomfort. In the past, I let this pain grow to the point where I am spending so much time thinking about it and treating it, that I realise I need to start exercising again so it all settles back down and isn’t a huge part of everyday.

In more recent times, I have learnt to anticipate this ridiculous dance and come at it differently. If you find that you are bemoaning the fact that you haven’t exercised (even just internally) try to catch yourself at that moment and ask yourself, “What can I do now for the next 5 minutes that will count as exercise?” That may not sound like much but if it gets you up off the bench (or couch as it may be), that’s a good thing.

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The last couple of days I began with stretching and although it didn’t take long I felt better in my body and it shut down the nagging negative voice in my head, allowing me to feel pleased that I had at last done something. Yesterday as I was feeling more energetic, I added in one set each of my lower limb rehab exercises. Today I actually got myself to the basement (my exercise space) and did a series of stretching and strengthening exercises. So now when I think about this week I can honestly say I have started back and know I will continue to build back up to my pre-illness levels of exercise.

Obviously for fitter people you can start with a longer exercise interval to get you started but for anyone recovering from illness or injury, you start where you can, be it seated arm and leg exercises, walking laps of your home, stretching, mobilising your joints, climbing the stairs a couple of extra times, or enjoy a stroll in the fresh air. Any movement is better than none. Taken a day and then a week at a time, with realistic incremental increases, you will find yourself developing an exercise routine that suits you, a routine you can be proud of.

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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.

Honesty and Fear

I feel as though I haven’t been entirely honest about my recovery and it bothers me, which is a bit odd because all of us choose what information, we share about ourselves, particularly when it comes to something personal and scary like a health crisis.

The moment I decided to write a blog about my first brain surgery, I opened the door and invited friends, family and even strangers into my home, life and mind. That’s the thing about blogging, when your topic is your own health and some crises you’re facing, the writing is naturally going to be personal or it won’t be worth reading for anyone; I certainly found it was the only way I could write, exposing the truth be that good or bad.

This time around, I haven’t had the courage or perhaps that’s being a bit hard on myself – I honestly don’t know if my inability (or unwillingness) to write and share what I’ve been living is because I’m afraid to sound weak in front of people who have come to expect bravery of me or if the lack of words stems indeed from changes in my brain resulting from this last surgery.

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.