It’s a grey rainy day, and I’m snuggled on the sofa with the dogs, and a hot cup of tea (Chamomile with spiced apple), watching the raindrops racing each other down the long window panes of the patio doors. The garden is enjoying a drenching, and the lawn is getting ready to make paws muddy. It’s a relaxing afternoon, my back is sore, partly due to someone driving into the back of my stationary car recently, but partly because it often will be, so I am indulging in horizontal therapy (lying on the sofa). Platon is curled up under my knees, and Leo has dug himself a trench in the cushions by my shoulder, on the fabulously wide sofa. Meanwhile Princess Poppy has the other matching fabulous sofa completely to her Diva self, where she stretches out and sighs, nonchalantly. I am in a reflective mood, partly due to the weather but also because today is the first anniversary of my life-changing surgery.
A year ago today, I was enduring the most terrifying moments, as I was prepared for emergency spinal surgery. After spending a night on a trolley in A&E (Accident & Emergency, or ER for my US friends), where I had been instructed not to move for fear of serious permanent damage, an MRI had confirmed my predicament, and doctors were rushing to get me into theatre. I had unwittingly sneaked a cereal bar for breakfast, and this delayed my suitability for general anaesthesia, buying me time to absorb the dreadful news and risks involved. I lay in my hospital bed feeling nauseas, and unable to focus properly on my surroundings, as adrenalin coursed through my veins, and my pounding heart drowned all other sounds to merely background din. I did at some point feel as if I was observing myself, as if this experience was happening to my body, but that I was watching somehow detached; I’m guessing the mind’s way of coping with such trauma. A surreal point in time, that will forever differentiate the before and after, a gut wrenchingly fearful realisation that my life was about to change, and that I had travelled past the point of any control at all, and the raging terror of what I would wake up to.
I had developed ‘Cauda Equina’ where a prolapsed disc was impinging on the nerve root, for the whole lower body. Termed ‘Cauda Equina’ which is Latin for horse’s tail, because it describes the appearance of the nerves that after travelling neatly in the spinal cord emerge to fan out down each leg, and affect the bowel, bladder and reproductive organs. I now know that the symptoms of ‘saddle numbness’, and changes to my toilet function, (feeling I had a full bladder, but passing little urine, and very urgent bowel movements) are red flags that my GP had wrongly ignored. On the advice of an osteopath, whom I had sought treatment for my intensely painful back, with radiating pain in my right leg (incorrectly assumed as simply sciatica), I had been admitted to hospital the evening before. He had instantly recognised the red flags, along with being horrified at my prior MRI results, and admitted that attempting to treat me could be very dangerous for me, not to mention professional suicide for him. I am so very grateful that I had been recommended to such a competent practitioner, and that because of him, I didn’t wait any longer for the medical attention I needed.
My doctors explained that the impingement on my nerves could worsen, possibly hurling me into paraplegia, or less severe walking abnormalities (from drop-foot to requiring a walking frame), incontinence, and loss of sensory feeling in my lower body. They then asked me to sign consent for the surgery required to prevent this horror, that by it’s nature of shaving the bone away from the nerves, also presented the same risks, along with the added hazard of blindness due to being operated on face down. Don’t ask me how this risk is possible, I did ask the doctors, but was too petrified to digest their answer. I remember checking photos on my phone, of the things I really wanted to see again (my three darling dogs, the turquoise Greek sea, golden Californian sunsets), and feeling so utterly helpless. I’m sure the risk is a very small one, but the threat of blindness tipped me into a tailspin of panic, of an already terrifying spiral.
Then the time came for the sides of my bed to be raised and secured, so that they could wheel me to theatre. I had a lovely care assistant that accompanied me, a beautiful Somalian girl whose cheerful countenance and compassion had managed to break through my fearfulness. She told me how much she loved her job, which was blindingly obvious as she sang and joked around the ward, and that only 3 weeks earlier she had left her post as a check-out girl at Asda (a supermarket chain). My Dad had joined in with her jokes, suggesting I needed a pound coin to take my trolley (bed) to the top floor of the hospital, where the theatres are situated. I was simultaneously grateful for his humour, and exasperated that he wasn’t taking my fear seriously; on reflection I know that he steadfastly refused to believe in the possibility of an impending problem, he didn’t do stress, unless it was completely unavoidable. As far as my Dad was concerned, I was in the hands of experts, and worrying simply wouldn’t change a thing.
I remember the tears rolling into my ears, as I lay flat on my back in my gurney as we took the lift, looking up at the kind nurse, a gentleman in scrubs, and my mother, whom I had insisted accompany me; like a child of 4 or 5 yrs rather than a woman of 45 years, still in a state of disbelief that this was actually happening. As we approached the daunting swing doors to the anaesthesia suite, the Somalian girl declared she was unable to proceed from here, and asked if she could say a prayer over me, to which I agreed gratefully. She then asked if a Muslim prayer in her own language would be OK, and I was so touched by her hesitancy, assuring her I’d appreciate absolutely anything, seriously anything. And as I was wheeled away, her kind words followed me.. ‘Inshallah’ is all I remember.
When I woke in the recovery room, I experienced blind panic, still groggy from the GA, in extreme pain, and dosed up on morphine; I couldn’t see clearly just a blurry movement of shapes initially. I remember screaming, as much as my lungs could manage, and sobbing uncontrollably, gasping for breath, and pleading for nurses to hold my hand, feeling so desolate and lost in a world I didn’t understand. This was the first panic attack of many, which haunted my nights in the next weeks, and continued with less frequency, but debilitating and embarrassingly in the following year. Apparently PTSD is not uncommon following spinal surgery, and the forums for Cauda Equina Syndrome reflect this clearly. I was eventually calmed and returned to the ward, when my vision returned, and reassured that I hadn’t lost my sight. I said goodnight to my parents who had been waiting, and giving in to the residual GA and morphine, fell into a deliciously deeply drugged sleep.
I was woken abruptly as frantic screaming pierced my consciousness; I thought the woman in the next bay was being murdered. I remember being perplexed at the nurses sitting quietly at their station, and then assumed she must be under-going some horrendously painful medical treatment. The screams shattered my fragile state, and carried on relentlessly till morning, when I noticed the woman in the bed next to me was whispering secrets to a teddy bear, and the woman opposite became aggressive, accusing a nurse of trying to kill her. I then discovered I had been placed in the only available spare bed, on a ‘dementia with trauma’ ward, full of mainly elderly patients with broken hips apparently, and one girl closer to my age with a bleached blonde pixie crop, also flat on her back in the corner.
Once properly awake, I was delighted to discover I could wiggle my toes, and notice the feeling of the sheets tucked around my feet, this induced a euphoria that overshadowed any pain I was most definitely suffering. I lay motionless, afraid to disturb my surgeon’s work, but flooded with relief; I had made it through surgery, could see, and the feeling in my feet didn’t make the possibility of walking too bleak. Actually, I am very, very, lucky; my outcomes are so much better than many of my fellow CES (Cauda Equina Syndrome) sufferers. The blonde girl was wheeled away to another location before I had a chance to talk to her; my heart sank as the only possibility of any sane conversation disappeared down a corridor. (We have since made contact, and found out we have a lot more in common than the same surgeon. She was my first lifeline of advice and support from a fellow sufferer when I eventually left hospital, and we remain in touch.) I lay there alone with my thoughts, still trying to piece together what had happened, how I had got through the fear prior to surgery, and what I might face in my recovery. My injury had occurred slowly, a number of small events that caused the disc to slip a bit further each time, over several months; and had been largely dismissed by everyone, including my GP. If this reaches one person who experiences something similar (your chances are slim, 2 in a million), I’d encourage them to demand the medical attention the red flags warrant, recovery is largely dependent on the severity and duration of nerve compression, ideally surgery is advised within 24 hours of onset, I had been struggling for several weeks.
The dementia element of my ward was extremely stressful to deal with, listening to women screaming at nurses trying to help them, repeatedly calling out the same questions, and whispering to their teddies. As I struggled with my own feelings of vulnerability, I could only imagine how frightening it must be for those with even less understanding, and a fainter grasp on reality. Then I realised that I needed the toilet, and couldn’t imagine how this would be possible, but my fears were unfounded when I was initially given a bedpan, and failing to christen it was allowed to be maneuvered by nurses onto a Kermode, which was irrelevant, because I still couldn’t pass anything. Meanwhile a kind health care assistant noticed my rising levels of anxiety, I must have been quite distressed, because I had a panic attack as they finally moved me to an orthopedic ward, minus the dementia element, where the most noticeable mental health problem was me. I gulped air as I struggled to breathe, my gown was soaked with sweat, my heart pounded in my ears, and I couldn’t stop sobbing. I am fairly sure they gave me something to calm me, and do remember being hooked to a morphine pump, before falling again into another drugged deep sleep. When I woke again, it was to the smiling, caring faces of the women in beds opposite. Jean and Maureen welcomed me to Ridge ward, both kindly supportive and encouraging, and I was so grateful to have moved there.
The next day, having been unable to pass urine and fitted with a catheter, my surgeon sent me for another MRI. I was wheeled through the maze of hospital corridors, counting the lights on the ceiling, and watching the assortment of busy people walking around me. Being lifted from my bed onto the hard trolley for the MRI, post surgery, was one of the most physically painful moments in my memory. I felt sick, and couldn’t bear to be shoved inside the tube they slide you into, as panic welled in my chest and crept up my throat, until I was crying hysterically. The medical staff were amazingly patient and understanding, turning me around so I could enter the scan feet first, and talking to me soothingly through the headphones, reassuring me they were working as fast as possible, so they could return me to the comfort of my bed on the ward. Although they expertly rolled me onto sliding boards, and across the plinth back to the gurney, it was the feeling of fragility, as much as the physical pain that I found so distressing. I am tall, with a slim build, but have always felt strong and quite robust, suddenly I was afraid that any wrong move could break me, and hurl me back to the risks I faced pre-surgery. This feeling prevailed long after leaving the hospital, where I found myself nervous on car journeys (having been advised not to sit for long), and afraid of children playing (incase they knocked me), I flatly refused to go into a supermarket in case someone knocked me with their trolley, and I avoided heavily populated areas generally.
The results of my second MRI suggested my bladder nerves were still implicated in compression, and my surgeon decided that it would be prudent to take me back to theatre to ‘tidy them up’. He explained that he would cut the same incision through flesh and muscle; to clean up any debris ensuring nerves were clean and free. I didn’t have time to worry much about the second surgery, once it was decided they all moved very quickly, this time unhampered by food in my stomach, as I hadn’t been able to face eating. By this time I was resigned to the lack of control I had over my situation, and having survived the first surgery, had built trust in my surgeon and his team. As I was wheeled again to theatre, I noticed my face was dry this time, maybe it felt too surreal to get upset, or maybe I was emotionally exhausted, or perhaps I was even getting braver, though I’m not entirely convinced about that bit. I remember being disappointed that I had a different anaesthetist attending to me, but he was friendly and joked as he sent me to sleep. When I woke again, I was in unbelievable pain, my body was throbbing, and the only way I could cope was to shut down, mercifully I was drugged enough to sleep, and with the bonus of nobody screaming murder on my new ward, this time to wake me.
The week or so that followed was a mixture of highs and lows, my first few steps were victorious, but still an inability to go to the toilet gave me nightmares about life with catheters. I had fantastic ward mates, we were a group of six women of varying ages and backgrounds, who formed a supportive cushion against our individual traumas. We checked in on each other, alerted nurses for each other when we saw someone struggling, and talked about the things that motivated our recoveries; so they all knew about my dogs and the Greek island waiting for me. By coincidence, one lady was the mother of a girl I went to school with, who now also lives in Greece, so we shared stories of my school days, and I took photos to send her daughter, after getting in touch again via the power of Facebook and thanks to hospital wifi. Eventually my bladder started working (hoorayyy!!), and I could manage the stairs, albeit very slowly, so passed the test for discharge, and to clear a bed for someone in need and waiting.
It was quite daunting leaving the safety of the hospital that had become so familiar, that I found the rhythms of medicine rounds and nurses change over comforting. It was also the beginning of a long journey of recovery, but a year later, I can look back and remain incredibly grateful. I am so thankful for everyone who sent well wishes, for competent surgeons, gentle physiotherapists, and caring, compassionate nurses, for friendships made from our hospital beds, to the thoughtful, kind visitors, for the cheerful tea lady, for friends and my Mum for looking after my dogs, for everyone that was part of my hospital experience. My gratitude extends to everyone that cared, supported, loved, encouraged, and commiserated with me on my journey, it really is in adversity that we learn who our friends really are. And of course I am grateful to be one of the lucky CES patients, who can walk unaided, can go to the toilet, and has an invisible injury. I am still wary of doing further damage; suffer with soreness, and coming to terms with limitations due to reduced strength and ability to withstand impact. I am so grateful I can walk that it would be churlish to miss skiing or horse-riding, but I still find it hard sometimes that I can’t run, even a few paces, or hike steep pathways down to favourite Greek beaches, without struggling. However, the road to recovery is not over, and as I continue to build strength, hopefully these things will be within reach.
Meanwhile, I lie here on the sofa, feeling the weight and warmth of my dogs on my legs is such a blessing. Leo has moved and lies with his chin on my thigh, watching me type one handed with my laptop in the crook of my arm. Poppy has deserted her couch, and lays on the floor beside me, looking up adoringly at Platonas, my rock, whom remains steadfastly supporting my knees, and my heart always. It’s now dark outside, and the rain gently tapping on the roof of our converted barn, echoes in the rafters, a scented candle flickers on the dresser, and I wiggle my toes to a year ago, and all that has happened in between.
Please take care of your back, and if you ever recognise any red flag symptoms for Cauda Equina, please insist you are seen by a neurosurgeon immediately! For more information, this is a very useful video: http://www.spine-health.com/video/cauda-equina-syndrome-video
Blessings & love, Hxx
{Photo credit: Britlively, Dior Homme SS14 photographer: Filep Motwary, Flo …Nooo, I don’t have a tattoo, but I do have an awesome little scar, that’s testament to my journey! Words by me, Hayley Darby ©2017}
Pure Nourishment 