How Taking off my Trousers Almost Paralysed Me
A 24 hour story of a pair of trousers, cauda equina, ambulances, corridors & the NHS action team thwarting government cutbacks to save lives!
I write this feeling the luckiest woman alive and few can say that after contracting the spinal emergency Cauda Equina Syndrome (CES). Not heard of it? Neither had I until I was rushed into emergency spinal surgery less than a day after removing my trousers before bed.
This 24 hour story, like the TV shows starring Keifer Sutherland, albeit with less action and more waiting rooms; unfolds revealing CES and my rescue by a dedicated action team of the National Health Service (NHS), who thwart multiple Government cutbacks to save the lives of those they serve.
CES termed from the Latin for horses tail, cauda equina, and derived from its visual resemblance of the bunch of around 10 nerves (including the sciatic — we’ll come back to that) which exit the end of our spinal cord (see image above).
These nerves are responsible for the sensory and motor function of everything from your waist down. CES develops when damage occurs to these nerves through compression within your spinal canal. There are a number of sudden or gradual onset circumstances which can cause this injury; tumours, abscesses, inflammation, narrowing of the spine, trauma — from say car accidents or gun shot wounds, or in my case, a herniated disc by taking off a pair of trousers.
While lower back pain may be commonplace, CES is rare and requires emergency hospital admission and surgery to relieve the pressure. It is not a back problem as such, damage located in the back which creates a neurological condition that destroys lives. This essential, time-sensitive treatment (within 48 hours) minimises and prevents the possibility of long term nerve damage resulting in the symptoms below to remain and paralysis.
Unfortunately for many, the symptoms are not caught early. This is often the case of medical negligence and lack of awareness of the red flags of CES.
The signs to look out for:
- Back and/or leg pain, sciatica in one or both sides and leg weakness or numbness.
- Saddle anaesthesia — known as any numbness or tingling in the area you’d sit on a horse.
- Bowel and bladder disturbances — inability to stop, control or initiate, loss of sensation when wiping and no sense of needing to go.
- Sexual disturbances — loss of sensation during intercourse, sexual organ dysfunction and sensation.
It only took for one symptom to present before it was clear I need to go to hospital, but being very British I did not want the fuss. As many can relate, sciatica is quite literally a ‘pain in the ass’, but rarely considered a worthy medical emergency.
Getting ready for bed ‘that’ night, bending down to take off my trousers — my slightly herniated disc went like a champagne cork. I thought the pain prior was enough — this was quite something else. Pain levels progressed from that of burnt toast to nuclear fall out, it became quickly apparent this was a matter of urgency.
I took some ‘over-the-counter’ painkillers, they certainly were not strong enough to touch this, and rubbed enough Tiger Balm on my back to repel flying insects within a five mile radius. The pain was unbearable, my howling and screaming now ensured all remaining small creatures kept to the same distance as their flying cousins. These methods were like turning up to an earthquake with a dust pan and brush.
Woken from his slumber, my partner was immediately concerned and wanted to get me to a hospital. It’s late, my young daughter is in bed and due back at school after the Halloween half-term, I refuse — “it’s ‘just’ back-ache, I really don’t want the fuss.”
Little did I know at the time that the NHS state you go to A&E or call 999 if sciatica is on both sides, which it now was.
It got too much, I had to go. I must say I have never experienced pain like it:
- Two days of labour on my first child before an eventual emergency c-section, the contractions had nothing on this.
- When my second c-section was finished I ‘woke’ before any administered pain relief and obviously general anaesthetic had worn off, again, had nothing on this.
- That same c-section an internal infection (skip to the next paragraph now if you’re squeamish) burst my scar open, still, that pain, had nothing on this.
So I conceded, I needed help. All three of us in the car, we drive to our nearest hospital, writhing and screaming all the way at any movement that car made. We arrive, I’m unable to walk for the pain so we make the rest of the journey in an abandoned wheelchair at the entrance, only to discover A&E is now an Urgent Care unit (I haven’t long moved back to my hometown and never noticed). This means Doctors ‘clock-off’ after 10pm.
The nurse says: “all I can do is give you pain relief, as you’ve had some you’ll need to go to the next hospital.”
If I appear to ‘moan’, it is never at the frustration with the staff encountered, but seeing first hand the demise of one of the greatest achievements a government here in the UK has ever accomplished: the NHS. I am pleased to say I have never known anything different to our healthcare system. From its birth in 1948, all forms of health care are free for everyone and publicly funded. Fast forward 30 years later, under a Conservative government, privatisation truly started to rear its very ugly head. Within the last decade the selling off of services to profit driven companies continues, costing the NHS billions each year and some of those big corporations finding tax havens so not to even pay any tax back to the UK.
The NHS is in as bad a state as me right now, and if that wasn’t enough, so was our car. The day before it started those engine noises, which have now worsened and we fear breaking down on the way to the next hospital, we’ve no AA cover and it is the middle of the night. Besides, my screams would have drowned out the noise but I couldn’t make it that far in the pain, I had to go home. My partner insisting we call an ambulance, I was reluctant enough with going to the hospital, let alone bother paramedics with ‘just’ back pain.
Through some form of miracle I had to get through the night and see my GP in the morning, leave the paramedics deal with their much needier cases.
Shortly after, I give in, pain is too much, horrific. As expected, we’re told the wait will be long. I’m later told by one of the paramedics that they are often delayed, not just because they have extra calls and shortages of staff, but they can’t discharge them off their ambulance at A&E due to the corridors being full and have to wait there with them!
Over four hours later they arrive, they quickly give me intravenous paracetamol and morphine which slowly takes the edge off. The guys are talking of CES, asking if I’m having the numbness, other symptoms besides the sciatica and I’m assured it’s not a spinal emergency. Never heard of it, not concerned, rare condition, whatever, give me more pain relief!
They make a suggestion to take me to A&E: “just to get checked over, they might offer you an MRI, but doubt they’ll be able to do that today. It’s really no bother to us if we stay here with you for a bit longer or take you in, we have no other calls now, up to you?”
I submit, my stiff upper lip limp with the morphine and in what felt like true dramatic style, they have to get the gas and air just to get me off the sofa and into the ambulance. They spend 30 minutes in the back settling me, more pain relief and making sure I was comfortable before setting off.
I overhear them talk about the cutbacks to the student paramedic present. One such cutback they tell him is about their new ‘wheels’. These have gone from Mercedes to Fiats; but apparently you can buy three to the one of them. No brainer I think, but it certainly doesn’t drive well, it was a bumpy ride and you most certainly feel that with a spinal injury. They say the design inside was certainly never designed by anyone who’s ever stood inside an ambulance before. Although, the trollied stretcher rolled off the back of that baby seamlessly. But before we go into a BBC NHS special of Top Gear we return to the story and me arriving at A&E.
I’m told the gas and air can’t leave the ambulance, I have been suckling at its mouth piece for the last hour. I cry like a baby. At the handover, I am placed in an already congested corridor — to say it looks like a scene out of a disaster movie would not be an exaggeration. There was method in the madness though, a corridor queuing system of patients lying on trollies snaking up and down in what should just be passageways. It was sickening to see, and be part of such a system, in which you are left for hours in a busy hospital thoroughfare crying in pain.
This was through no fault of staff, but an overstretched hospital with nowhere to send patients after their lengthy A&E visit. Continued cut-backs, ongoing privatisation and so on, the only thing currently saving our NHS is the dedication and true grit of those working within it at the moment. My admiration and respect for them is immeasurable. Knowing it is broken must be heart breaking to witness from the inside and you have to respect those still wanting to train to be part of it and those who continue to work there. One of the first to assess is one such hero which doth not don a cape, a junior Doctor, embarrassed he might have to assess me in the drafty corridor. Although, he manages to wheel me into a large office space and there he confirms sciatica, checks symptoms for CES decides there are none but would like to get me an MRI today if possible.
In the corridor queue of now over five hours I am eventually brought to a cubicle, secluded from the corridor carnage and I get some privacy there to cry in pain — embarrassment free. Shortly after, the senior Doctor arrives, he’d like to get me in to have an MRI just to confirm diagnosis of herniated disc causing sciatica. It’ll be in a day or two and he states I should be able to go home soon. Now if that was how this story transpired then goodbye everything from my waist down.
Pain relief is taking the edge off with what has been over 15 hours of the worse pain I have ever experienced. I am keen to go home and free up a much needed bed. Given that I ‘just’ had back pain, they could have easily shared my sentiment. Luckily for me, they didn’t.
An hour or so passes, I am getting a bit impatient to return home when the Doctor appears to say he might be able to fit me in for the MRI later this afternoon. Well, we’re here now so we might as well wait, and so far it’s been 12 hours since phoning 999!
Needing the toilet, my partner helps me off the bed and arm in arm we head to the loo. Despite his support and in a true moment of pathos, in front of the whole emergency room, my legs crumble beneath me and so does my dignity as the back of my hospital gown goes with it. Little did I know, paralysis was setting in and studies show that those who need assistance to walk whilst presenting with these early symptoms have a 50% chance of walking again. This probably confirmed to the Doctors that an MRI today was indeed a good decision.
MRI done, I’m wheeled back to our cubicle to find it taken. I’m reacquainted with the corridor but for variety am in a wheelchair. Doesn’t feel like long though and I’m taken to Clinical Decisions Unit (CDU), put in what looks like a storage cupboard of about four foot square. Me and my partner take a corner each, the other two occupied by the open door and the other an empty stainless steel trolly. The Doctor returns, hovering at the doorway, as to not get too intimate in the space with us, and there is a look on his face — a look I can only describe as sadness of what he’s about to say but also seeming a bit ‘chuffed’ with himself. (See, CES is rare, accounting for 2% of herniated discs and, he is an A&E doctor for which I cannot find the statistics but found General Practitioners (GPs) will only see one true case of CES in their whole career).
This is where it all went very fast. Words ricocheting the walls of that small space like a Squash court and hitting my panicked ears. Emergency surgery. Cauda equina. Paralysis. Incontinence. It slows down at hearing “have you had a rectal exam yet?”.
“No” I reply with a startled look, trying to take this all in.
I need emergency spinal surgery, so his next question is, when did I last eat or drink? I turned sheepishly looking to the half eaten cheese and onion sandwich and empty cup on the stainless steel trolley next to me, offered just moments earlier by the staff (we in the UK moan about hospital food, but that’s also free). That’s not good, it delays my surgery, as you may well know prior to surgery we must be nil by mouth.
The Doctor leaves and I Google CES like it was the latest fashion item donned by the Kardashians themselves (disclaimer: Kardashians scenario used for analogous purposes only and not have I ever done such a heinous crime). I cry, shock sets in, and my partner is straight onto the phone to tell close relatives of the emergency spinal surgery needed. A nurse appears, she informs me a doctor will be over to do my rectal exam shortly, my face was meme worthy. Thinking if it’s the Doctor we’ve seen so far then fine, he’s sweet, older. No, he had to be tall, dark, good looking and twenty-something. He asks if I would prefer a female doctor, my reply, still trying keeping my humour still, “a finger is a finger from behind isn’t it?”
Now I was expecting a jolt of surprise but nothing, asked to clench his finger and nothing. My CES was really taking force and now I’m getting very concerned. Damn that sandwich. That cheese and onion sandwich could be costing me the future of my bowel continence and that’s not a moan on the quality of NHS food.
The MRI showed a full herniation on my L5/S1 disc, the area where the curve of your spine meets your pelvis. A very common area to herniate as this disc is the one under most the strain our adult lives. I needed a discectomy to relieve the pressure, the operation is explained to me and ironically, a shiver goes down my spine.
I have already gone from my local hospital, to this nearest City hospital, and now for the operation, need to go to the next county for spinal surgery. The ambulance arrives and I am blue lighted the whole 1 to 2 hours there. On the ward now we immediately meet the surgeon who carries out the tests and assures me he doesn’t need to reexamine my rectum *relieved side glance to imaginary documentary film crew*.
I’ve just had a toilet visit so they can take an ultrasound of my bladder using a similar machine used for baby scans, “please no extra surprises tonight” I exclaim. It’s retained 200ml, an almost full bladder after I think I have just emptied it too. With this level of nerve damage present I have an 80% chance of living with a catheter for the rest of my life.
More tests, he presses his pen into areas of my feet and legs and sensations are felt perfectly. However, when he asks me to raise my legs, I can barely lift them. The control is going and it’s going fast. The rest of the story goes faster, prepped for surgery and before I know it I am awake again. I am always fascinated by our awareness of time passing from when we fall asleep at night to when we wake; compared to when we are put ‘under’. It’s like a blink, not time has passed. I’m back in the ward and the surgeon checks on me a few hours later, I’m pretty out of it. Asks how I am, I stick my thumb up and say “I’m cool.”
“You’re feeling cold?” his concerned reply. We go back and forth with this several times.
Eventually, “No, I’m cool, good, great” and can’t remember much else as I fall back to sleep. I notice enough to know that all that excruciating pain has gone! It is like it has never happened. I’m lying there feeling like this has got to be some kind of miracle. I tell the nurse “all that previous pain has gone”
“We do aim for you leave in a better condition than you arrived” she replies.
Sure, I have had an operation and it hurts, but not a single ounce of pain which had only onset less than 24 hours previously. I soon need the toilet, half expecting I’m hooked up to a catheter as surely I’m not walking anywhere for some time? I’ve just had a bit of my spine removed, disc tidied up and shoved back in, surely I’m not to be standing up for some time? Nope, off I go to the toilet. Bladder scanned again and it fully emptied, the relief one feels after going to the toilet went to a whole new level that night.
Again, I feel like I have just had a miracle performed on me, and I believe I did. I live in a country where we have free healthcare, a system which is slowly dying but a system despite this continues to fight against the odds.
My condition was ‘just’ back pain, they could’ve easily sent me home to free up space, but didn’t, and by doing so they saved me from life-changing disabilities. They pushed for an MRI and then rushed me for emergency surgery that day. All from the persistence of very hard working staff. Staff that no doubt are working themselves ill to make sure, despite all the strain, patients are being seen and treated to the best of their abilities, the top care the NHS stands for.
The delays of the ambulance, the horrific state of the corridor queues display we‘re reaching breaking point, if I got CES next year my outcome might be a totally different story. If I didn’t get the MRI that day it would have resulted in me costing the NHS much more in my future care. As I didn’t experience medical negligence and delays there was also money saved from litigation.
I write this at home reclined on my sofa, just two weeks to the day I took off my trousers. I’m getting more active and out the house daily. Being caught and treated early, my CES has left minimal nerve damage and I’m recovering fast.
I try not to think too much about what if, but how different this story I write would be without my partner insisting on getting an ambulance, the paramedics encouraging me to go to hospital, the junior Doctor recommending the MRI, the senior Doctor pushing for it that day and the competence, care and professionalism of all involved in my treatment.
My gran never had any useful or interesting sayings, but my friend’s gran did “a squeaky gate is the gate that gets oiled.”
If you, or someone you know, exhibits any one of those red flag symptoms seek help and fast. Be squeaky, you make sure that gate gets oiled and oiled fast.
My story here could have been a very different one and I am elated I am not telling you that alternative. It is a gift to have access to our healthcare system in the UK and I witnessed first hand how very under strain it is. My experience was far from perfect, but I will be eternally grateful that, despite the chaos I entered that day at A&E, I still got taken seriously and seen to as fast as they could.
I fear the future of our NHS and where it goes in our current political climate. The more its pushed to breaking the point the more justifications will be made to continue to sell parts of it off. So I cannot reserve any optimism for the future, but am truly touched by those within it still working hard for our health. If you are reading this and are one of those amazing people, then thank you for all you do.
You have gifted me a rebooted mindset to now make the best of the chance denied to many.
In one of my other lives, I am an artist, conveying themes of the biomedical as a means of public engagement on those topics. No doubt this whole experience will feed into a body of work and given that I sometimes use MRI scans (above)I certainly must get hold of my own ones now!
If you would like to contact me about this post then please email me at — info (at) rebecca-harris.com