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.

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.

 

 

 

 

 

Specialist Review

Sitting in a tiny consult room in a dingy corner of the Outpatient’s Clinic at the Alice Springs Hospital, I tell my surgeon it’s nice to see her without having to catch a plane and fly interstate.  She smiles.  “How are you coming along?” “Good,” I say.  I know she is itching to look at the scar so I pull back my hair at the fringe and side and let her examine her handy work.  Content it is healing well, she returns to her seat.  I neglect to tell her that I keep catching the scab at the top of the incision with my comb (yes, the same way I pulled out a stitch).  Before she can change the subject, I make a point of thanking her for such a neat incision.  She shrugs this compliment off.  I imagine doing neat incisions is the easiest thing in the world for a neurosurgeon.  I then tell her the nurses were very impressed and constantly marveled at how much hair she saved (as opposed to shaved).   It appears she didn’t anticipate this comment and smiles whilst looking a little bashful.

We chat about headaches, swelling, and pain medications.  She reassures me that the headaches will continue to improve as will the swelling, although she does stop to have a gently poke at the side of my face where the puffiness is most obvious.  I tell her I have returned to icing it, which should help, and after a two night trial of sleeping flat and an associated increase in pain and swelling, have returned to sleeping upright.

I wonder then how long it will take for her to mention the ‘elephant in the room’, the patch over my right eye.

In hospital, Dr. Harding was vehement that my surgery was textbook with no complications (which it was).  However, she eventually acknowledged that it was possible that my post-stroke symptoms would be exacerbated by the surgery; but was steadfast in her position that she hadn’t caused the vision problem with which I woke from surgery.  As an aside, she also didn’t think my blood pressure reaching 165/107 (stage two hypertension) was an issue and lectured me as to the un-likelihood of any problems resulting from it; that was until I reminded her that I had a stroke at 36 and all the doctors then had told me that wasn’t supposed to happen either. My blood pressure was spiking due to ineffectual pain management and amazingly it returned to normal once I had morphine on board!

Returning to this week’s consult and I decide to broach the topic myself asking if she received a letter from the Ophthalmologist I saw whilst in the rehab ward.  She had and the look on her face told me she wasn’t convinced. I then explained I had seen the eye doc a second time and she felt it was likely the swelling around my eye and surgical site causing the problem as it was unlikely my surgeon had damaged all the nerves of my eye – which were all testing poorly.

Dr. Harding was very certain as she told me she didn’t go anywhere near the cranial nerve during surgery, so surgery had not directly caused any visual issues.  I told her that was good to hear because it confirmed the likely cause as postoperative swelling, that would eventually, slowly resolve and with it, my vision.  I reassured her that I had no desire to wear an eye patch any longer than necessary and we both left it at that.

I asked about the Cerebral Angiogram she had said I would need within a few months of surgery and here I received another piece of good news. As my in-surgery angiogram showed everything was exactly as it should be post-clipping with no bleeds whatsoever, I won’t need to have another done until the end of the year.  It is her preference that I fully recover from the craniotomy before she subjects me (and my brain) to anymore intrusive tests.  That is fine with me!

Dr. Harding then scribbled a quick note for the administration staff, to have me scheduled to see her on her next visit to Alice, near the end of the year, smiled, wished me well for my recovery and showed me out the door.  I think I was with her for all of five minutes but that’s probably good, demonstrating that I am doing well in my recovery.

The Results Are In…Rehabilitation Assessments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

 

 

 

 

The Big Reveal

Today marks two weeks since my surgery and I cannot believe how well I am now doing.  As you know, the prospect of having an operation on my brain sent me into a spin, it seemed almost too big a concept to deal with and triggered great anxiety and fear in me.  The last couple of weeks have been challenging and that is unlikely to surprise anyone.  I have been horribly unwell due to pain and severe dizziness and have suffered as medical staff have made a half-hearted attempt to find the best combination of pain meds to deal with my pain.  In the early days, mum asked how my head felt and I described it thus: “Imagine the worst headache you have ever had, then add a migraine and visual and auditory sensitivity and distortion, then imagine someone has hit the side of your skull in the same place repeatedly with a metal hammer.”  I acknowledge this may sound melodramatic but it was how my head felt early on.  Thankfully, I have since been given better medications for the pain which makes me less sick and better able to exercise.  I have had two days recently where my pain has felt less severe which has been wonderful!  I know that with time, it will only get better and easier.

The past four days have seen me hit a number of significant milestones and I’d like to share them with you.  I have this week been able to:

  • Stand up without getting dizzy or falling over or having to use my hands to push myself up;
  • Turn around and turn a corner without losing my balance or getting dizzy;
  • Go two days without vomiting!!;
  • Start physio, speech and OT therapy and advance to hydrotherapy;
  • Walk the entire corridor on my own without incident; and
  • Shower myself standing.

Whenever I am in hospital I am acutely aware of how small my world becomes.  Immediately after surgery I am limited to my bed and soon master that environment, then I progress to being able to move into a chair for part of the day and perhaps even sitting up for a meal, then to moving around my room, quickly mastering that space, then I move on to other areas such as walking the corridors and attending physio and so on.  Leaving the hospital becomes another new start as being in a different, larger and busier environment takes a while to adapt to and so on.  At the moment, the mere thought of going to the airport and being on a plane, fills me with dread.

Since the op, only a few people have seen me and fewer still have seen my wound.  Our friend, ‘T’ visited last night and was pleased to see me able to get up to greet her.  Every other time she has visited, I have been flat on my back in bed or seated and wobbly.  It was reassuring that my progress in healing from the operation and my efforts the past few days at my rehabilitation exercises are showing results.

I thought it now timely to share a couple of photos of me, my wound and the multitude of the bruising colours.  I warn those with a delicate stomach that some of these photos may be upsetting.  As it turns out, the incision is a bit bigger than I had thought.  I had bandages and wound tape on my head for several days post-op so it was a little while before even I got to see the surgeon’s handiwork and how much hair had or had not been sacrificed.

All the nurses have been impressed with how the surgeon saved so much of my fringe and keep the scar close to my hairline.  I have days where I feel fine about it and the occasional day where I can’t bare to look at myself in the mirror.  With the facial swelling and bruising, I felt disfigured and for someone as vain as I, that was enormously upsetting.  Thankfully both the scar and swelling are progressing well and I no longer have a giant egg on the side of my head, it’s shrunk to more like quail egg size and my face is returning to its normal shades.

It has been quite helpful to have these photos for us to reflect upon and see how much improvement and healing has occurred in two short weeks.

And The Beat Goes On

Hello everybody, I hope this finds you keeping well.

As you already know, I survived my operation and it all went smoothly.  I am grateful to Jason for sending out some information for you all and your patience as we have traversed this first week.  It’s hard for me to comprehend that it’s day nine post-op already.

As per Jason’s last message, the surgeon told us she was relieved we acted when we did because once she got to the aneurysm and saw it for herself, well, her description was that it was nasty looking with very thin membranes meaning it was at high risk of bleeding and soon.  This is what we say to one another when we are having a crappy day to remind ourselves that the pain and everything else is worth the price of my life. This doesn’t stop us feeling miserable occasionally but we will never look back and regret the decision to proceed with surgery.

I hope to be able to document my progress through recovery.  My ability to do this is obviously hindered somewhat by the side effects of both surgery and the pain medications.  I am also experiencing double vision as a result of bruising to the muscle/s behind my right eye.  This bruising occurred when they were drilling into my skull close to the muscles and needs time to rest and recover.  In the meantime, I have to wear an eye patch to get rid of the double vision or I get terribly dizzy and disoriented.  The patch and slightly blurry vision in the right eye combined with a swollen eye makes reading, writing and even typing a bit challenging.  So bear with me particularly in relation to typos and spelling errors.

By the way, it is really nice to still be here!

 

When Bad News Comes a-Knockin’

Thursday 1 May 2014 – from handwritten journal

Today we are travelling from Adelaide to Alice after I had the cerebral angiogram yesterday.  Up early, can’t shower due to the dressing and still moving a bit slowly due to medications and tenderness at the puncture site (right hand side groin).  I am nearly done packing when I feel giddy and a severe headache quickly sets in.  I lie down as Jason throws the last few things in my case.  We look over the ‘what to expect’ details given to us at the hospital and see that it is common after this procedure to get strong headaches that are only relieved by lying down – awesome.

As we wait for the cab, I feel as though I could pass out so I lean against the wall at the top of the entrance-way stairs whilst Jason braves the cold wind on the street.  Just as I concede and ask Jase if he minds if I go and sit down, the taxi arrives.

I am thankful to have Jason with me as he handles the taxi, payment and navigation once we arrive at the airport.  He gets us checked in.  I am present but non-contributing as I really do not feel well.  Thankfully again due to Jason being with me, we escape the overly bright, deafening airport into the relative quiet of the Qantas lounge.  I am unable to eat anything despite Jason’s attempts to find something enticing for me.

I have the window seat on the plane and Jase has the isle (due to his ‘status’ we have an empty seat between us) and I’ve never been happier for all his work travel.  He gets me a pillow and I rest my aching head against it.  I select some relaxation type music to help block out the noise of the aircraft and its occupants and settle the headphones in place.  I don’t recall taking off and only stirred a couple of times throughout the two hour flight.  Once I figured out how to keep the seatbelt from digging into the injection site at my groin, I am mostly comfortable.  I wake during the flight and try to get warmer by pulling my jacket over me.  When I next stir, there is a blanket covering me and feeling cozy I am quickly asleep again.

We get home around 12.30 and Jason makes us a quick lunch of which I can only eat half, and sets off for work as he has an important meeting to attend.

I potter around the house for a while before going to bed.  I start off trying to read but my head is unwilling to let me concentrate. I then decide to do my ‘body scan’ meditation.

I am laying in bed about half way through the meditation when my phone rings.  No caller ID, I answer it suspecting who is on the other end.  It’s my Neurosurgeon, Margaurite Harding, her distinctive accent leaving no room for mistake.  I get up and make my way to the kitchen, grabbing a note pad and pen as I go.  After pleasantries, she asks how I went with the angiogram and I say fine, she chuckles briefly and I am sure that Rebecca, the Radiologist has mentioned how nervous I was.

She checks if I am back in Alice and then we move onto the reason for the call.  Both Margaurite and Rebecca have reviewed the films from the angiogram and they agree that they do not like the way it looks.  It is “nasty looking”, very irregular and unfortunately these are the type of aneurysms more likely to bleed.  It is too small for coiling meaning that I should have it clipped.  She pauses and with kindness says, “I know this is not what you were hoping for.”  I stop moving, my stomach drops and I feel…disappointment.   Not the disappointment you feel when you’ve missed a movie you wanted to see at the cinema or when you don’t get a job interview, but a deeply felt disappointment at how something out of my control has again set my life on a path of difficulty and pain.  Disappointment that what Jason just supported me through is not the worst he will go through this year and disappointment that despite wishing so hard for a good low risk outcome, I now have to face something terrifying and potentially life threatening.  This reflection lasts all of a moment and I pull my focus back to Margaurite.

I clarify that her advice is to have surgery to clip it and we then go through the details, including a graphic description of the operation.  the main risks, how long I will likely be in hospital and what restrictions I will have post-operatively.   For the description see post entitled brain-surgery-what-will-be-done on 22/5/14.

She is very thorough, saying a number of times, she would prefer to have this conversation face-to-face.  I ask a few questions, particularly relating to the risk of stroke during the surgery and explain that I want to set some advance directives in place such as ‘do not resuscitate’ if I suffer catastrophic injury during the op or following.  I explain that I do not want my husband being in the position of having to decide to turn off my life support.  Margaurite says she is confident nothing like that will occur but that she understands my desire to do this.  I ask if she is prepared to work with me on this and she says its something we can discuss face-to-face and that she will ensure it is noted in my file.

I ask about timing and she tells me that with the current schedule, I could be admitted in about a month’s time.  We will need a couple of days before the operation to talk through everything again,  and sign the consent forms and hospital admissions paperwork.

She tells me that if I have any further questions, which she assures me I will, to just call the administration staff and let them know and she will call me again.  We say goodbye and I hang up.  Standing alone at the kitchen bench, I take a long slow breath to calm myself.  I look around without focus.  Then a thought blazes across my mind, shocking me out of my stupor, How am I going to tell Jason or my mum?   My shock and disappointment are replaced with horror at this thought.  I feel acutely aware that I am (my health) once again throwing our lives into turmoil, causing pain and worry for those I love and I am both angry and devastated.

We have literally only just returned home after me having a test that scared me and now this!  I feel crappy physically as my body recovers from the stress leading up to the angiogram and the pounding headache brought on by the procedure.

There were three possible outcomes of the test.

Door No: 1 – The aneurysm has grown but its still too small to worry about and we just keep reviewing it.

Door No: 2 – It has grown and it needs to be coiled, invasive but not surgery.

Door No: 3 – It is at risk of bleeding, isn’t suitable for coiling and surgery is the only option.

I never thought it would be option three.  I always go into my tests with optimism as my companion (even when scared).  This can’t be happening, maybe it’s not really that bad.  As my mind starts spiralling into denial, I hear Dr Hardings words again as she described the aneurysm.  I remind myself of the trust I have in her and in that moment, have some peace knowing that brain surgery to clip the damn thing is the only option.

There is some solace in certainty.  No hemming and hawing about whether I am making the right decision.  If I don’t have the surgery, the aneurysm in all likelihood will rupture and I will suffer irreversible, catastrophic brain damage or die.  I live in Alice Springs, if it bleeds here, I am at least three hours away from the nearest Neurosurgeon, making the chances of surviving slim.  As a friend of mine said when we were discussing the risks of the angiogram and other procedures, “Better to stroke out on the operating table in hospital than in the Todd Mall.”  She is right.

I realise I am really not feeling well and return to the comfort of my bed and make good use of my guided meditations.  As I reflect, I feel calmer, resolved and I decide not to tell Jason right away.  I have almost picked up the phone already but that would be unfair, to tell him whilst he’s at work.  Then I decide that he deserves a night off from thinking about all this, that actually we both deserve some time off.  I resolve not to tell him that night and when he gets home we enjoy a quiet night, watching some tele on the couch together, enjoying the lull between test and results.  It is a good time because the stress of the test is over and there is nothing to do, no decisions to make until the results are in.

Jason works again on Friday and I spend the day doing house work.  The previous day’s news seems distant and I feel strangely calm.  Friday night arrives and I again think that Jason deserves a good end of the week-relaxing evening, so I don’t tell him I have spoken with the surgeon.  Saturday morning dawns and I realise, as I think how I don’t want to ruin Jason’s weekend, I am avoiding the issue.  This is not like me and as I start getting things ready for a pancake breakfast I realise that by not telling anyone, I am avoiding facing the truth.

I have been in a quiet little bubble where I haven’t had to discuss the issue, explore options, console anyone or make plans.  I have been blissfully inactive.  We cook breakfast together which is delightful and after we are satiated, I join Jason on the couch and tell him I have heard from the surgeon.  Talking about it suddenly makes it very real and we spend that day, dancing with it, having short discussions as one or the other thinks of a question or some salient point.  It is painful to explore and face and I realise I am frightened and more so, sad for what Jason will have to go through watching and supporting me.  We are both sad at the divergence in our lives again.  We mourn for the fun we will miss this year, camping trips, motorbike rides and just being happy and healthy.

We know what recovery looks like and as each of us stumbles through our fears and grapple with this news, we begin mapping the practical.  I am astounded at Jason’s commitment to me and the way in which, I worry for him having to watch me go through this and how he is sad for me, knowing how painful and challenging this will be.  I think this is part of what keeps us together and strong, great love and genuine compassion for the other.  In the midst of great sadness and fear, I am also filled with gratitude.

 

 

 

 

The Straight Man

Three different health professionals in town have now told me that my Neurosurgeon is “brilliant”, their words. My GP went one better adding that she is meticulous. He then somewhat soured the mood by telling me that Neurosurgeon’s don’t go into the brain anymore unless they absolutely have to.

When I saw him yesterday to confirm the surgery date and get him to prepare my travel assistance request for the NT Government, we had gotten through everything and as he turned to hand me the papers, concluded by saying, “Well that’s everything.” To which I replied (rather dryly I might add), “Yes, the only thing left to do now is have brain surgery.”

My new GP  has a reputation for being ‘medically’ excellent but rather gruff in nature. He strikes me as very ‘let’s get down to business’ like and I don’t mind that. I need a GP who can help me manage all the complexities of my care and he has been very proactive and helpful – when I told him I needed surgery, he momentarily looked stunned but then proceeded to go through three text books until he found a good picture of the part of the brain in which my aneurysm lurks, so he could show me and make sure I knew what was going to be done.

Yesterday, after my surgery quip, he actually sort of grinned and then as he walked me to the door, wished me well, said he’d see me when I returned to town and told me I’d be fine and actually cracked a full smile.

I think he’ll do fine as my doctor – I just had to break him in.