Ciaran Dunne

” In Feb 2008 I was married 17 years to my wife Madeleine with whom we had two boys, Gavin and Killian, then aged 12 and 10 respectively. I was 44 years of age and was the Chief Medical Scientist at the National Histocompatibility & Immunogenetics Reference Laboratory (NHIRL), Irish Blood Transfusion Service (IBTS) for over 10 years.  Prior to my first bleed I was fit and apparently healthy having no medical history of note. I appeared like many companions of the Celtic Tiger generation to be living life in the fast lane. My general ethos was "work hard, play hard". I naively felt invincible.

 

On 27/2/08 it was confirmed that I had a mild stroke. The decisive symptom was a temporary weakness/jelly like feeling in my right leg before the All Ireland club semi final throw in at Navan. My leg movements felt deliberate almost jerky as if the continuity of mind and body had become disrupted. My gait was unstable. I vividly remember the horrifying feeling of standing at the top steps of an almost full stand and realising that I would definitely fall over if I attempted to walk down the steps towards the vacant seats at the very bottom of the stand. I immediately grabbed my brother's arm to ensure that I would not miss history unfold!

 
I had experienced a pre/mini stroke (also referred to as TIA - Transient Ischaemic Accident) but although concerned chose not to dwell on it. I was away on business for a couple of days so I made an appointment on the Wednesday with my new GP Dr Morrison. Previous to this I had attended several specialists and my original GP with numbness of the right hand, minor but recurring right facial palsy and double vision. Surprisingly, nobody suggested a MRI.  However the symptoms were not linked until Dr Morrison referred me on evening of the 27th to the Mater hospital where my mild stroke was diagnosed by MRI. The stroke was primarily characterised by hemiparesis – weakening/slight paralysis of both limbs on my right hand side. At least I had got my wish. As I waited in A&E I had given myself one of three possibilities. Both, Multiple Sclerosis or a brain tumour had an unenviable prognosis. The scan showed the presence of a ponto/medullary cavernoma (Cerebral Cavernous Malformation - CCM or cavernoma for short) in the critical, lower brainstem. I knew nothing of cavernomas but the location wasn’t ideal. The attending physician observed, with a Scottish grin, that I had been very fortunate. He informed me that had the bleed been another 2 mm lower I would have ended up in a coma. I never really considered how fortunate I had been but instead focussed my attention on resuming where I'd left off. My optimistic predisposition ensured that it didn’t feel like I had just experienced a major neurological malfunction that was life threatening.

I stayed in the acute stroke unit under the thorough care of Dr O'Rourke and slowly recovered sufficient strength in my right limbs to leave after 10 days rest. During this stay I was referred to the only Neurosurgical hospital in Dublin, at Beaumont, for a cerebral angiogram. In Beaumont I was informed by the radiologist in attendance that I had a <5% chance of re bleeding. That sounded fine to me at the time. The scary possibility of a full blown stroke was never mentioned by anyone.  I now know that recent research has shown that brainstem cavernomas have a particularly high risk of re bleeding, approximately 18 - 21% per annum (London Symposium 2009), for those patients with a history of recurrent bleeds.  Cavernomas are clusters of abnormal blood vessels (usually capillaries in the brain), which have a raspberry like appearance. They are made of multiple little bubbles (caverns) which are filled with blood and lined by fragile cells which are prone to leak. Cavernomas can present as seizures, headaches and/or neurological symptoms (I developed the latter). They occur in approximately 1 in 100-200 people. Approximately 30% of those with cavernomas go on to develop symptoms (haemorrhage, migraine, neurological deficits, headaches, seizure etc), usually in their 20s and 30s. Strokes (to my surprise) are a very rare symptom. Fortunately in Ireland recurring bleeds of brainstem cavernomas are rare (0 to 1 case/year) as the symptoms are often devastating. I should know. A search of the Beaumont physio records showed that I was the only symptomatic cavernoma patient on their files. I suspect that cavernomas are under diagnosed given the unavailability of specialised MRIs and expertise in Ireland. Cavernomas range in size from 0.25 to 4 inches. Mine (solitary) was approximately 1 inch in size which must have caused considerable traffic congestion in an eloquent area (brainstem) the width of a golf ball.

Unfortunately, approximately 6 weeks later on 14th April 2008 I bled coming out of the shower. I suspected this was likely to happen in the days beforehand as I had started to deteriorate and develop weak, neurological stroke like symptoms during an anniversary break in the Roganstown Country Club. On the following Sunday morning, as increasingly expected, my right leg buckled as I exited the shower. I vomited heavily. I became instantly aware that I was in grave danger. My brother Fergus literally arrived in the house following a shopping trip to New York. He got a lot more than he had bargained for.  My eldest son Gavin stood in our bedroom, wearing his club top, as I was helped by the paramedics. I can't imagine what must have been going through his mind. I remember grabbing his club crest as I was escorted from the room. The club motto is "ferro commitante" which literally translates as iron resolve. How little then, did I realise, that I would need it in the days and months which lay ahead.  

I was again brought by ambulance to the Mater but had to wait almost 30 hours in A&E on a chair before being referred to a bed in the acute stroke unit. My experience of a Sunday in a city centre A&E was anything but pleasant. The progressive deterioration of my health seemed irrelevant. The positive CT (CAT scan) confirmed the presence of a fresh bleed in my brainstem. I knew I was in big trouble and requested that I be transferred as soon as possible to the neurosurgery department in Beaumont hospital. The feeling of utter desperation as the life was slowly sucked out of me will last forever. I lay helpless on the hospital bed, surrounded by incredulous friends, as the stroke gathered momentum, slowly but progressively weakening my right limbs and removing my ability to speak and communicate with those close to me. My right leg and arm felt became completely depleted of their intrinsic strength.

After, what seemed like an eternity, I was eventually transferred to Beaumont Hospital.  However I wasn't long in the high dependency unit (HDU) when I bled again, badly, rendering me completely unconscious. The last thing I remember was very severe coughing as I struggled to breathe. A full blown brainstem stroke ensued. The stroke which originated in the brainstem damaged the left hemisphere and caused hemiparesis of my right side (partial paralysis/weakness). Fortunately I was under the observation of Madeleine and the HDU Nurse Manager Pat(ricia) and was rushed a short distance to the ICU where I was immediately attended to by the ICU team and put on a ventilator to prevent cardiac arrest and subsequent respiratory failure. Needless to say I was totally unconscious for all of this.  A recent study of 124 acute stroke patients requiring ventilation showed a 1 year survival rate of 33%. The short proximity of those 10 metres were life saving.

Because of my predisposition to recurring bleeding the neurosurgeon deferred the operation for a further 2.5 weeks.  While I played with the grim reaper others pondered my obituary. I was heavily sedated in ICU remaining asleep or enduring very vivid and traumatic nightmares. When I came around the stroke felt like I’d been hit with a massive hammer blow to the rear of the head. I felt like I had awoken from a dull thud. The strokes caused me to lose my ability to swallow so communication with Madeleine and the kids became extremely difficult. I tried to create words by underlining the letters of the alphabet with my left hand. Double vision, inability to speak, impaired hearing, ataxia etc made this a very frustrating experience for all concerned.  I naively tried to reassure them with the promise of a family holiday, later in the year, to Africa.

 

During my stay in ICU I was consistently monitored by the Infectious Control team and was heavily sedated so my recollection of events is sketchy - my family and friends have helped here. I recall the early rises, the mandatory cold razor shaves, the wonderful vigilance and care of the ICU staff,  nightly paracetemol tablets for painkilling (codeine containing medication like solpadeine is now under  regulation), the daily vomiting of the lilac substitute being line fed to me, the intensity of the ward lights, regular physio visits to get me breathing on my own again, evening nebulizers to enhance respiration, anti nausea medication, a feeding line inserted directly into my stomach, very short visits by family and close friends, being linked to dozens of tubes and machines and the trauma of events 24/7 around me.   The absence of my left hemisphere’s (damaged by strokes) analytical judgement allowed me to become embodied in the right brain feelings of euphoria and tranquillity. I genuinely feared that I could end up permanently disabled or worse. For a guy who believed in invincibility this was uneasy, to say the least.

Almost 3 weeks later, following admission, I was ready for surgery. I was so heavily sedated that I was oblivious to most of what lay ahead. The thought of finalising a will never entered my head. But I wasn't apprehensive or nervous. I trusted the surgical team and realised that the future might not be much better than the predicament in which I had found myself. On 8th May 2008, over 6 hours under general anaesthesia, the brainstem cavernoma was expertly removed using microsurgery, by Mr Pidgeon and his team. Image guided surgical navigation (ie. computer assisted) was utilised to minimise disruption/damage to the rest of the normal brain tissue. I was later informed, by a member of the surgical team, that they only had 1mm to completely remove the cavernoma!

Following craniotomy my body temperature rose to 40 degrees celsius due to septiceamia, pneumonia and other infections. I made sure Ed Smyth and the rest of the Infection Control team earned their keep. Whatever optimism was shared by my family about the surgical success of the operation was soon countered by copious amounts of ice cubes being poured down my front to reduce the fever. I survived and remained under constant observation in ICU for a few more days before being transferred to the HDU for 4 weeks.

In HDU I started to restore my swallow reflex and ability to eat, drink, speak and excrete under my control.  I remember waking up one morning in HDU and realised that I was alive and cognitive, minus the cavernoma, having survived the ordeals of craniotomy.  My body felt limp and very weak.  It had been drained of all its energy, like a balloon that had been slowly but comprehensively deflated. I realised that I had to pay close attention to my energy levels.  I literally couldn’t wait to begin eating and drinking on my own again.  But firstly I had to restore my swallow reflex (dysphagia) to allow me to both feed and speak again. Occupational and Speech Therapists made this all possible over an arduous 7-10 day period. This allowed me to speak briefly again. It was this resumption of my first few spoken words that convinced the lads that their dad might recover. Pureed food was ditched sooner than recommended for the real thing.

While in HDU Madeleine and the boys took turns to wheel me outdoors to the bright sunshine. It was at times like this that I became more aware that the adverse affects of an ABI are not just confined to the victim. Fortunately we lived about 5 miles away – I hazard to imagine what travelling long distances, on a daily basis, must be like.  It was during my recuperation in HDU that I was discouraged to hear that this was only the start of a long road to recovery. I vaguely recall meeting Dr Morgan and Dr. Delargy from the National Rehabilitation Hospital (NRH). They assessed my suitability for rehabilitation at the NRH. At the time I was learning again to speak so Madeleine ably substituted. Even though I now know that the NRH greatly accelerated my recovery, my initial apprehensions, about undertaking this period of rehabilitation, were demoralising. It felt like completing a marathon only to be told, at the finish line, that there were several more miles to go. I had naively begun to imagine an upcoming welcome home party in the Porterhouse. This dream was only that.

I was then transferred by ambulance to the National Rehabilitation Hospital for 9 weeks during which I received extensive physiotherapy, occupational therapy and physical redevelopment. I was also rehabilitated on tasks as diverse as cooking, grooming, household care, computerisation and meditation. I was apprehensive about this stay in the NRH but I found the staff to be superb and to this day I am always glad to receive the sound clinical advice of my Consultant in Rehabilitation Medicine, Dr. Morgan. I soon discovered that the clinical staff had great faith in my continued ability to learn, heal and grow. I had to relearn basic personal care including how to dress myself. Scientists are now aware, that by the process of neuroplasticity, the brain can respond to incoming stimulations and recover its lost functions. The motto “use it or lose it” is very appropriate to brain recovery. I was fortunately placed under the attentive supervision of Allison. I soon realised that you only got out of the rehabilitation process what you were prepared to put in. Recovery was the difficult decision I had to make several times each day. The bottom line was I prepared to endure the painful agony of recovery? Notions of vanity, dignity and humility would require compromise too. In contrast to many of the other patients present I was fortunate to have relative youth on my side, no cognitive disability and physical damage, some of which, was recoverable. The staff knew that it was especially important to challenge my brain systems immediately. It was important for my recovery to prioritise those areas in which recovery was possible so as to maximise my valuable energy reserves.

Within a couple of days I realised, that relative to so many of the other patients, I had been very fortunate. I learned to get around by pushing the wheelchair with "my left foot" as my ataxic right hand would have got caught in the wheel spokes. Going to the bathroom, showering, feeding etc had all to be relearned from the difficult platform of a wheelchair. There was plenty of spare time to relearn such essential functions so I committed myself to extra gym visits to build up my core strength and daily bed exercises.  For the first few weeks Gavin and Killian wheeled me up the road to Baker’s Corner for Sunday dinner. After 3 weeks I was allowed to return home every weekend. We treated ourselves by visiting Butler’s cake shop on the way home. The daily commute across the city by Madeleine and the boys must have been monotonous and tiring. The “weekending” at home proved very beneficial especially when I intentionally left my wheelchair behind on departure day. Walking aids were similarly dispatched as a statement of independent intent. I remember, on departure day, heading to the Porterhouse with Madeleine for a pint of my favourite Oyster Stout.

I suffered a major setback/relapse in October 08 when my entire right leg went stone dead and stiff with numbness restricting me to very short walks to the bathroom and back. This was an enormous downer both mentally and physically as I had begun to see some light at the end of the tunnel. I had even attended my first social event the previous Friday. I was referred back to Beaumont hospital for two stays totalling one month.  What I remember of 2008 was the fantastic support we received from so many. The lads particularly relished their regular excursions, with club friends, to see matches both locally and down the country. The winter of 2008/09 was dark in the extreme. When I review my personal diaries I am immediately struck by the constant severe headaches, in several locations and the aggravated tinnitus.  Social events were a disaster as the high pitched frequencies of plates, cutlery, glassware and voices became unbearable. My poor health meant that I was forced to quit gym for 6 months till end April 09. One of my few pleasant memories of this period was playing catch ball with Killian to improve my hand to eye coordination. I also remember the amusement playing darts with the boys and particularly the mock celebrations when I, very occasionally, managed to win with my left.

I felt almost desperate for some reprieve. I was prepared to chance anything In April 09 I tried Constraint Induced (CI) therapy which involved me wearing an oven glove, in reverse, on my unaffected hand. This was beneficial to my affected right arm for about 6 weeks (on 2 occasions). In fact writing with my right hand became legible. Unfortunately, my brain rejected (induced onset of bad headaches) activation of my right hand.  In June 09 I replaced the crutches with a walking stick and ventured for the first time into town on the local bus with Gavin and Killian.  It was in Sept 09 that my right hip started to feel sore. This was most likely due to lopsided weight carriage of an increasingly mobile body.  By the end of August I began walking short distances unaided and by October I had this up to 1,000m.

After I left Beaumont in October 08 I did regular physio there with Michelle and Roisin over an 8 month period. To address my balance deficit this physiotherapy concentrated on the computerised EQI machine. However, even this clever device failed to significantly improve either my motor or sensory balance even though I had also committed myself to a vigorous, daily home exercise programme with the emphasis on gaze stabilisation.  In August 09 I was then referred to Prof Luxon, Neuro-Otologist, in Wimpole Street, London.  This was a highly productive day confirming that my inner ear activity was only 15%, I had bilateral inner ear damage especially to the left ear and damage to both the vestibular (balance) and auditory (hearing) nerves.

I suffered another significant setback in October 09, similar to 08, but not as devastating physically or mentally. I have only been able to walk outdoors again, for short distances, since Spring 10. The treacherous underfoot conditions in winters 2009/10 and 2010/11 have contributed significantly to my house confinement since I have been left with very poor grip/touch in my right sole. Being reliant on others to escort me to the car (see later) and de ice the vehicle is also limiting.  The constant fatigue to maintain balance when mobile and the depleted energy levels caused by the acquired brain injury (ABI) and repeated setbacks are highly frustrating. I would love to have Lucozade Sport’s ability to bottle this energy. I could then focus on the first 45 and leave the last 15 to Ronan (O’Gara)!

I had to endure very severe and painful headaches (possibly migraine) during winter 2008/09 but their frequency and severity are reduced now. I cringe when I reflect on those dark days. Tinnitus is permanent but more tolerable and only bothersome in the late evenings and at bedtime. As the left side of my face and the right limbs were primarily affected by the strokes I have no sense of smell in my left nostril, poor hearing in both ears especially high frequencies in my left ear (even with a digital aid), poor coordination (ataxia) and increased muscle tone in both right limbs, reduced feeling/sensation in my right palm and sole, occasional facial palsy and twitching, very slight slurring (dysarthria), vertigo, swelling of my right foot and impaired temperature regulation in both right limbs especially my fingers and toes.  Cold weather and saunas are avoided, if possible. I remain sensitive to sensory (bright light, small print, noise) overstimulation. Reflux problems (probably because I was in a rush to relearn how to swallow and eat in HDU) were frequent in the first year or so (embarrassing regurgitation, in public) but rarely now. Yawning lockjaw, irregular heartbeat, repeated setbacks/relapses, disturbed sleep, scary darts across the brain, pain in the vicinity of the brainstem, temporal throbbing and painful cramp in lower right leg at night all serve as further reminders that it hasn’t gone away. A doctor has indicated to me that a clicking sound is a warning sign for strokes. Whenever I hear this rattle from the back of my throat (approximately monthly in the vicinity of brainstem) I immediately become wary and relax instinctively. Initially this clicking was scary but over time I have learned to take them in my stride. Similarly with a burning taste at the back of my throat which heightens anxiety about breathing. Neck muscle stiffness and right shoulder impignment remain a nuisance despite regular exercise.

In Aug 10 I met Kieran O’Reilly, a chartered physio with the Dublin football and Irish cricket teams. He put me on a series of exercises to strengthen my right glutus muscle and hip flexor muscles. The positive effects reduced but didn’t eliminate the grating pain that I experienced in my right hip when mobile. The ataxia in my right hand has improved since Nov 10 when I began daily shoulder stabilisation exercises.  In Sept 10 I purchased a tailored splint/prosthetic in the NRH to reduce the numbing/deadening effect in my right leg. From my perspective this symptom is THE characteristic symptom of setbacks/relapses and considerably affects my quality of life. I wore this relatively cumbersome device for many hours each day, with disdain, but after approximately 2 months the deadening in my leg is such that I only need to wear the splint every fortnight or so. Wearing this splint has also taught me how to reduce the deadness in my leg by promptly resting it in an elevated position with the foot curled towards me. However it is awkward to put on, uncomfortable to wear and aggravates my hip. I dislike putting it on now as it invariably means my right leg is deadening and my choice is limited.

Depression is an unfortunate but inevitable consequence of brain surgery. Unfortunately for the majority of patients it doesn’t go away. Strangely I never suffered from depression throughout my stay in Beaumont or the NRH. However, it soon became established with the onset of my first setback in October 08. Advice emphasises that depression should be viewed as an inevitable stage of adjustment following an acquired brain injury (ABI) and should be regarded as a sign of progress and moving forward. Rehabilitation personnel view the onset of depression as an insight, understanding and awareness of one’s ABI condition. I have gradually and consciously reduced this medication (under medical supervision).  I have voluntarily attempted to address mental aspects of an ABI with Headway and Prof Cotter at Beaumont hospital. Headway provides services for ABI patients and their families and specialises in brain injury rehabilitation. I am indebted to Suvi, Senior Clinical Neuropsychologist at Headway for helping me overcome many of the constant frustrations of living with an ABI, the anger which is an inevitable consequence of an ABI and anxieties regarding the future  As a professional I suspect she understands me a lot better than I now know myself. I have always enjoyed those sessions. She helped me to learn about my new self and have a good laugh (at myself) too. I also volunteered for an exhausting 9 hour cognitive assessment at Headway, with Conor, over 4 sessions.


I was also called in August 2010 to the Irish Wheelchair Association (IWA) for a driving assessment. This was passed following a driving suitability assessment for over 1 hour. I then took 5 driving classes before putting a deposit on a Nissan Qashqai. This car, following advice from the IWA, was then adapted (infra red spinner, left accelerator and extended rear view mirror) for use. This automatic car has completely transformed my life. The sense of new found independence is palpable. It takes about 2 months to recondition the brain to now using a left foot accelerator. Driving has provided me with the freedom to consider domestic, social and sporting avenues that were less accessible in the last 3 years.

Driving also gave me the opportunity to consider some form of return to the work environment. Prior to this, commuting to and from the National Blood Centre had been a major concern. With this in mind I met Samantha, Headway’s employment officer with a view to returning to part time work, if possible, sometime in 2011. My employers, the Irish Blood Transfusion Service (IBTS) have been very supportive over the last 3 years. I was fortunate in that both my Consultant and Laboratory Manager have been particularly encouraging, keeping me up to date with progress in the work environment.  In January 2011 I met with Samantha and Suvi to review their recent visit to my place of employment at the National Blood Centre. My employers continue to show flexibility but my circumstances have compromised a return to the post. This position was tactfully relayed to me. As I sat there in Headway the realisation that I would not be in a position to return to my original fulltime, laboratory post, in a meaningful way, was traumatic. I had naively assumed that the previous 3 years had prepared me for repeated exposures to the school of hard knocks. The quest to return to my original job, in some capacity, had served as a distant target during my recovery. It was said to me that I needed time to grieve. I now appreciate this but at the time it felt like encouraging the cats to bark. I now realise that optimism rather than realism governed my outlook. I remember, at 34, having to give up playing hurling. The body had had enough. There was nothing voluntary about this battle between what the mind wanted but the body couldn’t do. A survey of UK stroke survivors in 2000 showed that 27% returned to their original or modified jobs. 12% became students or undertook voluntary work and 6% obtained a different job than before their stroke. Over half did not return to work. If/when my health improves I hope to be able to make a meaningful contribution to my professional field of immunogenetics in haematopoietic stem cell (bone marrow) transplantation and/or transfusion science.

My personal experience of the Irish Health system has been extensive over the last 3 years. I also sought health care in London and Zurich. My impressions are that the level of healthcare provided by medical, nursing and related paramedical staff is of the highest quality but access, due mainly to administrative bureaucracy, remains the biggest problem. The number of patients residing on A&E trolleys in Irish hospitals is a sad testament of this reality. I hate to think of the problems that ABI patients might encounter if they have intellectual disabilities, severe physical disabilities, are aged, live in remote locations, dependent on carers etc. The treatment I received in Beaumont and the NRH was and still is very good. Unfortunately, once Irish stroke patients leave the public health system as an inpatient healthcare often becomes only accessible through significant expense either locally or abroad. In Ireland, private health insurers steer well clear of covering neurological care. Tackling the Irish health care system has been a simple question of perseverance. I remain sceptical about what would have been achieved without relentlessly knocking on doors until they opened.
 
The picture looks a lot rosier now than many originally thought possible when I lay in ICU three years ago. My physical disability (according to the Rankin scale) has travelled from severe (grade 5) to slight (grade 2). The probability of the cavernoma reforming is <1%. In the last couple of years my eyesight, mobility, gait, equilibrium and static balance have all improved considerably. The car has given me independence. I am now functionally independent with the exception of fine, dual hand tasks such as opening tight lids, slicing steak, buttering toast, transcribing phone messages, cutting tablets etc. It seems that my immune system is less robust and the ataxia and muscle tone in my right limbs (esp. my hand) have gradually worsened since I left NRH inpatient care in 2008.  Successive setbacks have also progressively depleted my energy reserves. The associated and gradual increase in neurological susceptibility to stress, infections, alcohol, fatigue, physical and/or mental over exertion have frustratingly compromised me further.  Towards the end of March 2011 I fell on concrete for the first time. Indoor tumbles have been occasional. However, only for the fact that I managed to grab some seats, to buffer the fall, bruising to my right arm and hip wouldn’t have been the only consequence. I realise that the next time I may not be so fortunate.

My recovery has been hugely influenced by the incredible work of a number of people who I never knew existed. If these wonderful people could make so many sacrifices to improve my well being then the very least I could do was reciprocate this effort.  I was fortunate in that I was relatively young, fit, with no evident impairment of cognitive and intellectual capacities. I had a scientific/clinical background, great and continuing support from family and friends and a determined and motivated mentality. However surviving and recovering from these brainstem haemorrhages has taken and placed a very substantial toll on the human frame. I fully realise that I will never be the old me. This has proved especially difficult for my immediate family who have been forced to accept that this new personality differs from what existed before. Disability unfortunately forces a switch in emphasis towards oneself reducing in priority other concerns that were previously important. While the financial costs have been very considerable they pale in comparison to the devastating physical and emotional consequences that remain an unfortunate reality for ABI victims and their loved ones. The reality is if I was offered the Euro lotto or a resumption of my original good health I would immediately choose the latter. You can never put a price on your personal health but most of us never fully value it till it is taken from us. The cost to the state has also been substantial. However, given the amount of tax I have contributed to the exchequer over the years they should retire me to the Seychelles for rest and recuperation!”