Spinal Tap

My husband and I have been working through some new health issues (mine, of course!). As our lives are about to get interesting again, medically, I thought I would share a quick update whilst I am able.

Late last year I was diagnosed with epilepsy as a result of scaring in my brain from the last aneurysm surgery and now experience what are called focal seizures.  The damage to my brain is in the expressive speech centre so when I have a seizure I lose the ability to speak and write – I literally cannot express myself.  I also get very sleepy and that combined with the medicine has meant they tend to wipe me out for the day.

Three weeks ago I finally had corrective eye muscle surgery to address the double vision I’ve had since my first brain surgery in 2014.  The eye surgery appears, at this early stage to have been successful (yay!!) but unfortunately, something about the op/anaesthetic/eyes and brain getting used to a new world view, triggered my seizures so I have been having up to two per day since the op.  Blah.

My Neurologist has now prescribed a daily anti-seizure medicine so we can get them under control again.   Whilst this does indeed stop the seizures, it makes me super drowsy, dopey and easily confused.  It does also mean that I am very easily entertained; a patient Jason had to gently escort me out of the Easter isle in the supermarket the other day as I excitedly moved from one cute bunny to another and another and ….

However, whilst the eye surgery recovery and seizure escalation has been evolving, we have been dealing with what we like to call the ‘biggie’.   A long time ago (around 15 or so years), I suffered two spinal cord injuries each requiring emergency surgery, from which it took an awfully long time to rehabilitate; but I did it.  As it turns out though, the damage caused by the initial injuries of a ruptured disk and compressed spinal nerves has led to the development of a new problem called arachnoiditis.  Just call me Spider-Back!

In short, my spinal cord nerve roots have become clumped at the level of previous injury and can longer move freely.  This can lead to damage to the nerves as they stretch rather than glide when I move and just being clumped can cause a wide range of neurological issues.  This past year I have seen a worsening of the nerve pain in my legs, changes in my motor control (tripping, staggering) and bowel and bladder problems (over share, I know). With brain surgery being my priority last year, I didn’t notice all the changes until I was well recovered and off all the pain medicines.  Once I realised things weren’t quite as they should be, I saw a couple of specialists and they were agreed that there is one treatment option – surgery.  I go into hospital tomorrow.

A highly recommended neurosurgeon will cut into the sac containing the spinal cord and un-tether as many of the nerves as he can, whilst monitoring nerve function so as to try to avoid doing any damage.   It sounds daunting but the surgeon was (as most surgeon’s tend to be) confident he could get the job done and done safely; making this my third surgery in nine months!

So, there it is, the next saga of my medical misadventures.  After this is done, I’m never going to a doctor again!

Why Write

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

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

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.

A Blow To The Senses

** This post was originally scribbled in late September 2016.

I recently discovered I have no sense of smell. Weird, I know, how could I not have noticed? I knew in hospital my sense of taste was off as nothing tasted quite right and I had a constant taste of pepper on my tongue. This persisted for weeks but I have now, slowly, begun to differentiate some flavours. Whilst it makes tasting what I cook somewhat risky, thankfully, I can still taste chocolate, so it’s not a complete disaster.

As to discovering the loss of my smell-ability, that came whilst mum and I were taking a stroll outside and spotted a bush resembling lavender. I mentioned that there was a plant here that looks like lavender but isn’t. Reaching over I ran the flowers through my hand to capture their bouquet, sniffed my hand and stated there was no smell and it mustn’t be lavender. Mother, being ever so believing, reached over for her own test, turned to me with a quizzical face, offering her hand to me, saying, “Yes, it is lavender”.

Confusion ran through me as I ran my hand over the flowers and tried again, expecting to smell lavender this time, thinking that somehow I must not have been paying attention the first time but again, I could smell nothing.

Resuming our walk, I tried to make sense of it. I knew what the flowers should smell like but nothing registered in my brain when I tried to smell them, it was as though there was a blank in place of scent.

Upon returning home, we began a sniff-athon, testing my nose against a range of smells; we tried perfume, my favourite incense, and coffee grounds, all with strong and easily recognisable aromas, yet nothing registered for me.

Concerned, I contacted the lead Nurse Practitioner (NP) of the surgeon’s team to ask how long I should expect it to last. After consulting with my surgeon, she informed me it is unlikely to recover; that’s right, unlikely.

As the realisation of this information sinks in, I am brimming with sadness and a sense of capitulation. Where’s the bloody white flag?

My conversation with the NP went like this:

Me:

“You may recall that I lost my sense of taste after the op, whilst that has improved slightly, I have realised I also lost my sense of smell. Anyway, I figured this is probably one of those things that should resolve over time but wanted to check.  I mean whilst I don’t mind having to pass on the job of checking if food is off by sniffing it, it is impacting me.” Note my complete lack of understanding as to what had occurred.

Nurse Practitioner:

“I wanted (surgeon’s) opinion too. Seems unlikely that it will improve, but need to give it up to 18-24 months to be certain.”

Me:

“I find myself shocked at the idea that the loss of smell and changed sense of taste may be permanent.  I understand that with time things may improve as I’ve been through that with my stroke deficits.  I guess the question I have now is, how did this happen?

Nurse Practitioner:

…“Anytime you manipulate the olfactory bulb (on the under surface of the frontal lobe) you can loose sense of smell from that side; there is one on the under surface of each frontal lobe. So if you lost the right one from the previous surgery, you had the other one that still worked. When we went in on the other side, that manipulation may have taken out the other one, causing loss of smell as the other one was already gone.  These are such sensitive structures…I know it’s not what you want to hear.”

The idea of having brain surgery is daunting, due largely to the possible complications. I know that when the doctors rattle off the standard list – bleeding, stroke, loss of limb function, change of personality, death, I generally can’t be objective about it. The death part doesn’t worry me anywhere as much as possible stroke and brain injury, as having had a stroke, I have an intimate understanding of what that means and it ain’t much fun; but sign the consent forms I do and trust to the steady hands of my surgeons, knowing there are no guarantees.

With each of my craniotomies, there have been unexpected outcomes and I’ve worked really hard to deal with that, manage around new limitations as best I can and investigate therapies that may offer some help. This time despite a very experienced surgeon, my left olfactory bulb was damaged perhaps irreversibly (and with hindsight, I now also know the first surgeon damaged the right one). With it goes my ability to smell anything) including burning toast, gas leaks or food of any kind) and with smell affected, so is my ability to taste. It makes flavour checking something I’m cooking a huge challenge and knowing if food is spoiled – well, that’s a whole other adventure!

I live in hope that my brain will heal and that little bulb will one day soon start to fire up and send out it’s oh, so important signals. It is with this vehement hope in mind, that has me continuing to sniff things, attempting to keep the pathways between nose and brain working.

It may seem to be a trivial sense to lose but for me it has been deeply upsetting. As someone for whom cooking, baking and eating good food bring enormous pleasure, it has impacted the very heart of me. My place of solace has always been the kitchen and now half the picture is missing.

 

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Imagine  not being able to smell or taste your favourite foods.

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.

Glad Tidings

Happy New Year to you and those you love. May 2017 be filled with good health and contentment for us all.

It’s natural at the end of the year or early in a new one, I think to reflect a little on how life has been treating us, and vice-versa. Its no secret that 2016 held a few difficult times for me as I grappled with needing another craniotomy and then the actual recovery; but as I have looked back at this past year, I’ve found myself feeling quite happy. Yes, there were some very real hurdles to overcome but largely it was a good year.

I mentioned this to Jason yesterday and he said he felt the same way, that in amongst it all, we have seen and done lots of fun and new things and his overall impression of 2016 was also a good one.

I think sometimes it’s too easy to write off a year due to one or two ‘bad’ events or situations. In 2016 we enjoyed two interstate road trips, saw many interesting and beautiful places, continued to develop our new found friendships with the people sharing our Denver journey, had a week’s holiday in Mexico, established ourselves as ‘locals’ at the nearby brewery, connected closely with our friends and family around my surgery, have been to see lots of new movies at the cinema as they are so inexpensive here, learnt new skills, survived our first blizzard (I stayed indoors and refused to stick even a nose out the door), became Great-Aunt and Uncle as we welcomed two baby girls into the family and settled into our new life in Denver.

All in all, not bad when you consider I had brain surgery mid-year!

Here’s to a wonderful 2017 for us all.

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.