And The Eyes Have It

In all my healing and muddling through I have neglected to provide an update on my vision and associated things. A little while back I had a review with the Ophthalmologist at the Alice Springs Hospital eye clinic, to follow up on my nerve palsy, caused by post-operative swelling compressing the nerves of my eye, causing severe double vision. My friend E an Optometrist, offered to come along for morale support. Thinking it would be wonderful to have someone I could pepper with questions, should I be left with any, I welcomed E’s company. On the day, I was pleased to see my friend was there ahead of me, chatting amicably with the staff. In a place remote as Alice, my friend not only works for a private business but also with the hospital staff undertaking very remote travel to provide eye care in Aboriginal communities and also spends time working at the in-town Aboriginal health service. She is extremely busy and dedicated and it is this that makes me truly appreciative of her taking time out to accompany me with my relatively straightforward eye condition.

For more on eye health in Central Australian Aboriginal communities, these links may be of interest. http://www.hollows.org.au/our-work/what-we-do/improving-indigenous-health & http://www.hollows.org.au/news-media/town-alice

E introduced me to a colleague, Ms. M, who was visiting from Tennant Creek, the next largest town, 500 kilometers heading north, with a population of around 3,000 people. She was down to observe the Alice team at work for the day. I am not sure who would be seeing me but I have heard a great deal about Dr. Tim Henderson and the great work he does and doubted my condition would warrant his attention. After a short wait a dark haired young man walked into the waiting area, looked at the file in his hand, “Ahh, um, Ver-riana.” “Veraina,” I corrected gently as I stood.

I followed as he led us to a consulting room, with a couple of old chairs, a small desk and piles of boxes and equipment. I made my way to the seat next to the desk as E slipped in behind me, taking the chair by the door.   I told the doctor she was there for morale support (not realising he was a visiting student doctor and had no idea who she was).

He introduced himself and explained he would be examining me and doing all the tests before the Ophthalmologist would see me and asked me to please tell him the circumstances leading to my visit. As I began, I recalled a conversation E and I had a couple of weeks before my operation about patients wasting valuable time with trivialities. We were cooking breakfast whilst camping at Boggy Hole and somehow we got talking about what information is important to provide and her frustration with clients whom when asked the polite question, “how are you today?” go on to spend most of their appointment time actually answering the question, usually talking about anything other than the reason they are at the Optometrist. I recall telling her that after all my practice attending medical appointments, I thought I had become quite good at answering questions appropriately and providing relevant information.

I recounted the pertinent events to the student doctor relating to my eye issue, as concisely as possible. When I finished, I glanced nervously at E. She nods her head encouragingly and says, “You did good.” Thank goodness, I think and relax a little, as we shared a quiet chuckle.

The doctor proceeded to write notes and begin what became two hours worth of tests. After the first 45 minutes, E had to return to work.  Prior to leaving however, looking ever so casual, E asked the doctor his opinion of which nerves were involved in my case.  The young doctor pushed his chair away from the desk and faced her as he “ummed” and “ahhed”.  He eventually began a halting recital of his text books and whilst being put completely on the spot managed to provide an answer that E accepted as reasonable.  “Do you have an interest in eye health?”, her victim asked. “You could say that,” says my friend in an manner one might expect from the cat in and cat and mouse scenario.

Ms. M from Tennant seemed to adopt me after E left and asked if she could follow me through the testing as I was undergoing a rigorous process that enabled her to see a lot of what the team do. At one stage I had to have drops put in my eyes and wait as they did their thing, so we both took a seat in the waiting room and passed the time with talk of the woes of the health sector in Tennant and Alice, the decline of funding and then the joys of hospital stays. It was actually a really pleasant way to spend the time. When the nurse came out to give me the drops, she handed me a tissue and tilted my head back, “Now there are two different sets of drops so just stay like this while I do them.” I complied but when the second lot of drops hit my eyeball, they set off a searing pain. I bucked against the pressure of her hand on my head and stamped my foot in an effort not to punch her. As both the pain and I settled, my new friend was heard to murmur, “That’ll be the nerve ones.” Gee, thanks mate. You could have warned me!

After several tests the student doctor spoke with the Ophthalmologist, who seemingly disbelieving of what he was told, came into the room and repeated a number of tests and measurements. When, after two hours of every eye test known to woman, he finally met with me for the verdict, he explained they wanted to have a solid benchmark for my vision in the event of me having any issues down the track (particularly as I have brain aneurysms). Further, he told me I had regained the peripheral vision lost after surgery and my vision in the right eye was excellent. The only remaining obvious sign of the nerve palsy was in my eyelid, which was still drooping. He believed this would also resolve with time as would the weakness of the eye and the double vision I have with distance vision and when tired. The pain I have upon tearing up is nerve pain and it will hopefully also go away. He then said, “It is the fastest ever recovery from nerve palsy I have ever seen.”

Fastest ever, oh yeah, that’s right. Fastest. Ever. Recovery.

So much for: “Leave the patch on for six months and we’ll see how it’s going”.

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.

Perspective or Thank Goodness The Vomiting Stopped

I have been feeling a little ‘off’ the past day or so.  Nothing I can really point to except perhaps a lack of energy or interest in anything, perhaps a bit dizzier than usual.  I mention this to Jason who reminds me it is to be expected occasionally and to just take it slow.  My internal reaction to his sage words, tells me that despite not feeling great, I must be getting better.  My reaction is of the, bah-humbug sort and I realise I am a bit ‘over’ recovery and it’s myriad of symptoms and limitations.

This morning however, I was flicking through some of the notes I scribbled whilst in hospital last month and I found the piece below. It spoke to me deeply as to what I have been through, how well I really am doing and helped me remember that with enough time, healing will be done. I thought I would share it so as to provide a glimpse of the stages of my recovery.

Hospital Journal – 8 June

I wake with a pounding head and am given some Panadeine Forte. I settle back with my ‘Distancing Yourself from Discomfort’ meditation, slip an eye mask over my face and an icepack between my head and pillow. I am comfortable, momentarily. Nausea quickly strikes and I am again reaching for a vomit bag, as I go from saliva-mouth to upchuck in seconds. I breathe deeply attempting to settle it and buzz for the nurse. It’s still morning medicines and observations rounds so no one comes. I am sick again and am trying hard to stop, as I don’t want to lose all my tablets. As vile as it sounds, I have already identified a few floating in the sick bag and can’t lose any more, as they wont be re-administered. After what feels like an eternity, the nurse rushes in to check on me, swaps my bag for a fresh one and gets something for the nausea.

My stomach settles slowly and I reflect on how poorly I feel. It’s only a week since the surgery and I am already fed up with being stuck in this bed, this room, and this hospital. I am literally sick and tired of the persistent pain in my head, this awful double vision and horrible dizziness.

Whilst I know things could be so much worse, it is small comfort at the moment. As soon as I wake each day, the first thing I am aware of is the aching and stabbing pain in my head; to call it a headache does not do it justice. I spend my days surfing waves of pain. I zig and zag between pain, dizziness, fatigue and nausea. Today, frankly, I am over it.

I know it will improve and that recovery requires time, rest and discipline.  Right now though, I would just like to have one better day; one day of  reduced pain and illness to give me a light to follow, a hope to cling to and to remind me that I am healing and improving.  (end)

To read this a month later when I am again having a moment of feeling ‘stuck’ in recovery is insightful. It was only weeks ago that I had a really serious operation and was dreadfully ill. I remember the days I was writing about in the above, reaching such a wretched point where I had been vomiting on and off for hours and with every retch, my right eye felt as though it may well burst its socket; not to mention the pain the pressure from vomiting caused my head. It was at this point that I told Jason I didn’t think I could tolerate the pain much longer.  I was desperate and despairing. We both begged the nurses to do something to help me and eventually the senior nurse called the on duty doctor from the Intensive Care Unit.  Seeing my wretched state and realising that Panadeine Forte was the equivalent of a Tic-Tac in treating post craniotomy pain, ordered intravenous fluids (to combat dehydration brought on from days of vomiting) and effective pain relieving medicines. It had taken several horrendous days but thankfully, my pain was being better managed and miraculously, I stopped vomiting.

Even though I am still uncomfortable and occasionally frustrated by my current limitations, reading the above puts my recovery into context and I accept that this is where I am right now.  I have come a long way in a short time and in another week, I will be better again.  Knowing this makes being here, a lot easier.

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.

My hospital Stay in 30 seconds

Aneurysm, Anzacs, Brain, Bruises, Craniotomy, Cards, Dizziness, Drugs, Enemas, Extra Blankets, Friends, Flowers, Gym, Gifts, Husband, Hudson’s, ID, Intravenous, Jason, Jelly, Kindness, Kids, Love, Laughter, Mum, Mother-In-Law, Neurosurgeon, Needles, Operation, Ouch, Pain, Pool, Queries, Quest, Rehab, Relief, Sleep, Specialists, Tears, Trapped, Underwear, Uncertainty, Visitors, Vomiting, Worrying, Writing, X-marks-the spot, X-ray, Yammering, Yearning, Zits, Zonk.

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