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.

Crappy Complications (a flashback to 2014)

I never intended to take a break from writing about my recovery but alas the events of the last three months of 2014, conspired to render me mute. I hope that anyone wondering as to my progress assumed I was distracted by a return to full health and was busy living my life. This was, unfortunately, not the case. I have no desire to document everything that befell me in the last three months of 2014 but would like to provide an accounting of that time; it is only reasonable to have an accurate record to reflect upon. Who am I kidding – it’s for catharsis!

So dear friends, readers and other neglected persons let me share with you the events that left me unable to rally a defense.

My last post in October 2014, (five months post-op) was about the early signs of full recovery and I genuinely felt on the threshold of improved quality of life, despite continuing painful headaches and funny (new) episodes of dizziness and passing out. To the latter, my GP assigned blame to Morphine, dropping my blood pressure too low, so that whenever I stood up I became faint. Once these episodes reached the point of me having blackouts several times a day and having to lie on the kitchen floor until my vision cleared and head stopped spinning, the GP agreed to cease the Morphine. He put me onto an increased dose of Tramadol, adding a slow release version morning and night in addition to fast acting four times a day.

My physical recovery had been continuing despite the ‘episodes’, albeit slower than it should have. Mid October I even baby-sat a friend’s three-year-old boy for half a day. Despite a very active few hours, I felt great and was really pleased at how well I’d managed (as well as said boy child surviving intact). Finger painting, decorating a robot helmet, being chased around the house by child wearing robot helmet, reading; all this was within my capabilities and it was marvelous.

The next day however, in the kitchen at home, I stood up after retrieving something from the fridge and my head spun, the world began to disappear as darkness clouded my vision and like so many unfortunate women in the movies, I swooned. I felt control of my limbs flee and wondered, as I begun to slide to the floor, if I could protect my head from any impact. Jason, also in the kitchen saw that I was not well and grabbed me around the waist, supporting me as my strength vanished. Each blink of my eyes showed a darkening room as I sagged, a dead weight in his arms. Blackness followed.

After only minutes, blurry vision was restored and Jason half dragged, half directed me to the lounge. I lay my face gratefully against the cushions, relaxing knowing it was safe now to succumb. Lying there, weakened, I became aware that my left arm was behaving oddly; bent forcefully at the elbow, tucked against my chest and fingers curled tightly. When it began to twitch in spasm, I felt a flicker of fear at the familiarity of these symptoms – exactly like when I had a stroke in 2007.

As quickly as the fear rose, I stamped my reaction down, seeing no good purpose in it. I did however mention the symptoms to Jason and we concluded it was just a response to the funny ‘episode’ I’d just had. We both know that anything that challenges me physically can see a return of the weakness on my left side. Later when I began moving about, I was disappointed to find I also had developed a pronounced limp, all the joints of my leg were locked up and my hip swung forward in an uncontrolled bowing movement. But again, we put it down to fatigue and went about our day.

We have talked about that day since and realised that the stroke of 2007, changed so much for us both, we have a new sense of ‘normal’. With brain injury so many things can impact brain and body functioning, a late night, too much noise, a head cold, over exercising; all this and so much more can strip me of my strength, coordination and endurance. A recurrence of weakness and fatigue is the new normal.

When the deficits had not resolved after a few days, I saw my doctor who upon physical assessment confirmed that I was presenting with hemiparesis (weakness or paralysis affecting one side of the body) and that my hip flexor in particular, was not switching on. His initial thoughts were that I had experienced a severe loss of blood pressure and had extended that by not fainting (laying down immediately) and may have triggered a vasospasm* in my brain. In short – I may have had another stroke.

He promptly sent me to the hospital Emergency Department (ED) with a letter requesting an urgent MRI. Alice Springs Hospital had only just installed an MRI machine in the previous six months and rumor had it that the waiting list was already quite long.

I waited three hours to be seen but once the doctors examined me and took my history, there was an increasing sense of urgency on their behalf. They contacted the Neurosurgery Unit at the Royal Adelaide Hospital who asked them to perform a CT Angiogram to ensure the aneurysm clip installed in May was still in place and, there were no brain bleeds. This was done and thankfully all was clear. I was however admitted to hospital as the doctors felt I still needed the MRI and access to rehabilitation services.

The following morning, as Jason arrived with a change of clothes for me, two staff appeared at the end of my bed and following a rushed introduction, my impression was that one was a doctor, the other a student doctor; the Saturday morning ‘B team’, a friend would later call them. They examined me, in a perfunctory manner, noted the CT was clear and advised I would not be having an MRI, as they felt the CT was sufficient. Granted, I was a tad sleep deprived but I recall thinking how only an MRI would clearly show the deep structures of the brain (such as) where my first stroke occured but okay.

They then inquired as to my walking stability and I informed them nothing had changed overnight. They had me walk for them; my glamorous hospital gown trailing upon the ground, comically oversized. I took four wobbly, slow steps and they stopped me; four steps, I kid you not. That was the extent of their walking and stability ‘assessment’.   For goodness sake, they couldn’t even see my legs in order to assess functioning. I wobbled back to the bed as the doctor announced in a dismissive tone, “Oh well, you don’t really need rehab do you, I mean you’ve had a stroke before so you know what to do”. “Yes, get the hell out of this hospital”, I thought as my eyebrows climbed their way towards my hairline.

I confirmed they were saying there would be no MRI or rehab support (the reasons I was admitted) and they left (without waiting to see if I would stay or go). My decision was a quick one; I was already feeling weaker from a day sitting around the hospital instead of doing as much as possible for myself at home. If there was to be no support or further tests, there was zero point in staying.

I returned home no better and without answers.

My physical weakness worsened and the rate of the episodes of passing out increased dramatically.  This state of affairs continued for some time and to be honest, I struggled to maintain my optimism, finding the idea of further brain problems emotional paralysing. Living with worsening episodes, we nicknamed ‘brown-outs’, slipping into near unconsciousness up to four times a day, with the only explanation being “something was going on in my brain” (as my GP put it). I became so unwell I stopped being able to do almost anything.

This was a difficult period for us and we largely kept things to ourselves as we simply had no idea what we were facing. My mind was filled with terror at the prospect of new brain damage or neurological deficits and my world contracted until I had to schedule my entire day around the recurring episodes. My mental health at the time deteriorated, and my physical recovery quickly went with it.

Then I had an episode in public and things escalated quickly. Whilst getting groceries with Jason at ‘Woolies’ one afternoon, I began to feel unwell, sounds and colours distorted, becoming harsher, crashing upon my mind like storm churned waves; thinking became difficult as dimness crept slowly into my peripheral vision. Feeling as though my mind was shutting down, I didn’t reach for Jason or utter a word. Backing slowly, groping blindly for purchase, I bumped into the shelves of the cleaning products isle and with a sense of self-protection used them to ease my body to the floor.

I lost touch with time and in the haze that was now my mind’s workings, there were no thoughts of embarrassment or concern, I merely waited the event out, some primal part of me knowing it would pass soon and I was safe, and that that was the only thing that mattered.

Slowly, I returned to the world around me, to see Jason looking down at me, asking if I was okay? He helped me to my feet and shepherded me to the front of the store. We made our way to the small food court and I rested on a bench seat as Jason got me some water. As my head cleared, I tried to reach for the water bottle on the table directly in front of me. Nothing happened. My arms and top half of my body wouldn’t move, I felt as though I was made of molded plastic with no moving parts. I tried and failed to move my arm again and felt a flash of terror. ‘I’m having a stroke’, I thought, the words loud in my mind. “I can’t move my arms,” I told Jason. He looked at me seemingly confused. Then I said words no one has ever heard me say and they lit a fire under him, sending him into immediate action – “I think I need to go to hospital”.

Jason was on his feet and at my side instantly helping me to lie down. As he turned to get his phone, a police officer walked by and I heard Jason, his voice oddly strained saying, “My wife may be having a stroke, can you call an ambulance?” The officer complied and only a short time later one arrived and I was rushed into a high dependency bed in the Emergency Department. By the time I arrived, I could move my arms and body and was feeling okay but had a ‘brown out’ episode in front of the doctor a short while later. It seemed that whatever was wrong with me was escalating.

This time when admitted to the hospital, I was taken seriously and kept in for four days whilst the Alice Springs medical team liaised closely with the Neurology Department at the Royal Adelaide Hospital and eventually figured out what was happening to me – it was a severe drug interaction.

My doctor had put me onto a new pain medication (Tramadol), both an acute (every 4 hour dose) and a longer acting slow release dose. Initially, I was taking long-acting Morphine with Tramadol throughout the day, but my doctor (not realising a drug interaction was occurring) thought the morphine was causing my blood pressure to drop too low (causing my first few episodes). Thus he changed the morphine to the slow-release Tramadol and this is when I really started to have problems. Tramadol, when combined with a particular nerve pain medication (I have been on for years for a spinal nerve injury) can cause Serotonin Toxicity. Serotonin toxicity or syndrome severely affects muscle function, disrupts signals from the brain to the rest of the body, causes seizures, serious mental health imbalances and the nervous system ceases to work properly. If left untreated it can lead to death. This interaction was responsible for all my symptoms, including the hemiparesis. These medications should not be prescribed together.

After reviewing my medication log and diary of events, we could see a correlation between a worsening of my symptoms with every increase or change in this medication. The cure – stop taking it but gradually, as the serotonin toxicity worsens with every change in medication dose, even a reduction.

The next month was dreadful as every time I dropped the dose, the side effects increased dramatically, leading to more episodes of dizziness and passing out and many other unpleasant side effects. Each time I dropped the dose, I would have one to two days whereby I lost control of my body and spent most of the time resting on the couch, feeling horrible whilst knowing that ultimately this was the path to regaining my health and sanity. My mood throughout the Serotonin Toxicity was nothing short of feral and my cravings for chocolate took on an obsessive trend. I joked (later) that for Jason, coming home from work was akin to opening the door and being greeted by a large and mightily unhappy Rottweiler dog. His only path to safety lay in running into the lounge, throwing a bag of Cherry Ripes at me and running to the other end of the house until Rottweiler Veraina slipped into a chocolate induced, friendlier mood.

I am happy to say that we successfully navigated this treacherous period and I begun to recover. The doctors at the hospital were pleased with my commitment to reducing the drug dose (as many people stop reducing once their symptoms worsen).  By Christmas I was only having the occasional dizzy spell with no full-blown episodes and I begun to be able to do more. All that said though, it would take another two months before I felt recovered.

It took me a long time to regain my post operative recovery momentum after such a dreadful complication and I was angry at my GP for quite some time.  The only good to have come of the whole mess, is that he now knows a lot more about checking possible interactions to the medications he prescribes.  I just wish I hadn’t had to be the ‘crash-test’ dummy!

*Cerebral vasospasm is narrowing of a cerebral blood vessel and causes reduced blood flow, which may lead to delayed ischemic deficit and cerebral infarction if left untreated.

 

The Hospital Inmate or Patient (as they like us to be)

You may have heard it said somewhere that when going into hospital you should “check your dignity at the door”.  It is unfortunately, true.  The other saying is, that “hospital is no place to be if you need rest”.  Personally, I am a firm believer in there being a fine line between staying in hospital long enough for them to fix you and getting out before they kill you.

I thought by way of example, I would share a standard day in hospital as documented by me at the time.   I wrote this because, as someone recovering from a craniotomy, it seemed as though there was a lot going on around me but I wasn’t sure if that was the case or if it was merely my perception.  I certainly had days when I wished I could be left alone to rest, sleep even.  I don’t expect you to read each entry merely consider the sheer number of interactions required on a standard day in hospital.

Day Six Post Surgery

6am                Water jug collected & meds administered.

6.45am          Morning shift receives handover at room door.

7am                Morning obs:

                        Blood Pressure (BP), oxygen saturation, temperature, pupil response, hands & feet strength.

7.20am           Fresh water jug and newspaper delivered.

7.30am           Fresh towels dropped off.

8am                 Surgeon visits.

8.10am           Buzz for pain meds.

8.15am           Breakfast delivered.

8.20am           Morning meds dispensed.

8.30am           Neuro Nurse Liaison visits.

8.45am           Excruciating head pain experienced.

9am                 Finish breakfast.

9.15am           Senior ward nurse pops in to check progress.

9.30am           Morning Obs including orientation to time and place.

9.45am           IV Gelco removed in preparation of showering.

10am               Shower and wash hair with nurse assisting.

10.20am         Cleaner through room.

10.30am         Neuro Nurse Liaison returns with update.

10.40am         Speech Pathologist assessment.

11am               Jason arrives for visit.

11.15am         Mail delivery.

12pm              Pain meds.

12.15pm        Lunch delivered. Continue reading

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.

Escape

It’s three weeks since my craniotomy and I escaped…um sorry…was discharged from hospital yesterday and finally joined Jason in his temporary home at the hotel.  It was a big day starting with a final assessment with the physio at 7.30am, which I did well enough at for them to let me go.  Getting out of hospital is a big milestone and signals the beginning of the next phase of my recovery.  Today hasn’t been the best day I have been incredibly tired and spent the bulk of the day on the couch snuggled under my dressing gown, only peeking out from this cocoon for pain meds and food.   Luckily, a dear friend has flown in from Melbourne and is staying at the same hotel for the weekend to help out or as I describe it to provide a boost of morale for Camp Skylight.  Having someone else here gives Jason some respite from having to do most thing for me.

I was a little ‘stoned’ this afternoon due to the morphine tablets kicking in with force (perhaps because I was already so very tired) and apparently was somewhat amusing when 4 fire trucks turned up in response to a building alarm, which turned out to be the hotel we are in.  I was quite excited to see so many fire men and crawled onto the window sill (it’s quite wide and not high for anyone who rolled their eyes while reading that) for a better view.    My friend dashed outside so we could snap a pic of her with the fire trucks in the background and as she playfully gripped the bars outside one of our windows, a fireman called out “Don’t let her in” much to our collective amusement. We found out later the alarm had been triggered by someone whom after cooking bacon and filling their room with smoke, opened their door,  introducing the smoke to the hall smoke detectors, thus triggering the alarm.  This is a heritage building hence the swift response of so many fire trucks.  After all this excitement however, I was quickly asleep on the couch again.

After enough rest, I managed a walk around the hotel and a drink at a quiet table at the hotel bar ( non-alcoholic for me) and it was lovely to do something so ‘normal’.

Hopefully tomorrow I will be a little stronger.