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.

The Joys of Family

There’s nothing quite like family to help out when times get tough.  There’s nothing quite like my family.

Upon discovering that I do, indeed, have screws in my skull holding in the bone flap removed during surgery, Jason, my beloved husband began looking for his magnetic Bucky Balls to see if they would stick to the metal in my forehead.

Yesterday during a conversation, my mum joked that I may literally “have a screw loose”, and fell about laughing.

Yep, there’s nothing quite like family.

Pre-Op Prep

After signing the surgery consent form and meeting briefly with the anaesthetist, I am wheeled in bed from my room to the surgical staging area where two theatre nurses are waiting.  The nurse whom accompanied me from the ward, hands me over to them, lays her hand on my arm, wishes me good luck and disappears back the way we came.

The theatre nurses introduce themselves, explaining they will now prepare me for surgery and will be looking after me throughout.  The two women have an easy rapport and routine born of a long time working together.   I observe them as they check their lists and my details.  Another person joins us – the anaesthetist nurse.  She will also be looking after me in theatre she tells me as she wraps my legs in mechanical compression devices for the prevention of clots.

I am now moments away from being wheeled into surgery.  Everything slows down for me and I take in the activity around me, keeping my breathing measured and calm.  I take a moment to look sympathetically at the man nearby, standing at the head of another bed, patting the hair of young man (his son I presume, he looks about 16 years old).  The young man is still and staring at the ceiling looking terrified.  I feel for them both.

The nurses finish the paperwork and getting me into another gown and tell me they are taking me to theatre.  I nod and begin the slow ride to my fate.  I look at these women, in their theatre scrubs and think how good it is they introduced themselves and let me know they are there should I need them.  Their hands and the anaesthetist’s will be the last I feel before I am rendered unconscious.  Unexpectedly, I find myself reflecting upon a dear friend, who used to be a theatre nurse, and I am filled with comfort at the thought of these nurses being like my friend, as I cannot imagine a kinder, more reassuring person to have in theatre.  Imagining my friend is with me as I take this step helps me to proceed with calm curiosity and confidence of a good outcome, as the wood and glass barn doors of theatre part to allow me entrance.

Thank you, Miss M.

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

 

 

 

 

Rehabilitation

I am quite excited.  Today I was finally assessed by the Rehabilitation Intake Officer and she agreed some rehab would be required, she then moved a few people about and got me a bed today.  The hospital I am in has its own rehab ward so I have just moved from one ward to another but it’s already showing huge potential as they assess how to ensure I will be strong and stable enough to go home.

I have a Rehabilitation Physician overseeing my care and a multidisciplinary rehab team to assess and develop a program for me.  The doctor has blown me away with his kind and thorough assessment and interest in not just my immediate needs but also looking at helping me better manage the legacy of my spinal injuries.  

I had two spinal injuries in my 20’s and early 30’s that left me in debilitating pain & some loss of function.  I was never offered rehab through either hospital where I had my surgeries and had to seek out options on my own.  Same again after a stroke six years ago, we had no health insurance for rehab so I didn’t get any and the hospital stroke unit was closed as it was Christmas holidays, so I was never assessed.  Some of my deficiencies were not diagnosed for over a year!

I have had to fight tooth and nail to get the help I did and I had to coordinate it all (from interstate).  

I now feel as though I’ve been granted some magical wish and may actually get the support I require and the opportunity to work holistically with a professional across each deficiency (or disability).  This could help set me onto an even stronger recovery path and I cannot wait to get started.

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!

 

One More Sleep – See You on The Flip Side

This will be my last post for a little while now that my surgery is so near.  I am first on the list in the morning and am scheduled for 8am.  Currently, I am rugged up in my bed at the hospital, having sent Jason and my mum away so they could get some dinner and I could have some quiet time to myself.  I have felt very calm today which I appreciate.  The only time I began to feel nervous was when I was taken into the Intensive Care Unit to meet the nurses and have a look around so we knew where I would be and what to expect tomorrow.  I will spend one or two nights there after the op.  The nurses all came over to say hello and reassure me they would take good care of me.

Writing this blog has helped me work through the shock of my diagnosis and find a way to arrive here in a good state, physically and emotionally.  I would like to thank everyone for supporting me through, what is, really just the beginning of the road in this journey and for listening to or reading about my fears.  You have probably figured out that I spend a lot of time in my own head.  I think this is, in part, due to having been trapped in a body that has on a number of occasions ceased functioning properly.  I learnt after years of anguish and rehabilitation that addressing concerns head on and working through challenging mental states is essential in order for me to recover and move on.

Every step I have taken in this life has been leading me to this moment.  I take some comfort in that. I take refuge now in the skill of my surgeon and all the medical staff responsible for my care.  I take refuge in knowing my legal affairs are in order and my wishes known and respected.  I take refuge in the love and support of my friends and family and in having the best partner and husband I could ever wish for.

Should you think of me in the coming days, please try to see me healthy and happy.  Then if you can, think the same for Jason and my mum.

May you know your heart’s desire and have the courage to pursue it.

With gratitude and love,

Veraina xx