Most of the time when people ask me about why I'm in the chair, and realise I can't walk, they bark up the wrong tree, purely because most people seem to have this idea that those who are spinal injured were either involved in a car crash, or had some kind of fall, or freak accident. But the reason I can't walk couldn't be further from that. 3 Years ago, I was diagnosed with the condition that ultimately caused my paraplegia, due to a rare complication that even today isn't taken seriously enough by some doctors. Spondylolisthesis is thought by some as 'just a slipped disc,' but it's actually the slippage of the actual Vertebrae! Yes, the actual bones in your spinal column move out of position, sometimes backwards, but more often is forward slippage. When you have spondylolisthesis, you basically have a broken back. Some people can go years without knowing that they have the condition, while for others including myself, the slip causes complications like stenosis, nerve root compression within the spinal cord, and pain that most people think isn't possible until they've experienced it themselves.
But the rarer, more devastating complication of Spondylolisthesis happened to me. Cauda Equina Syndrome or CES as its shortened to, is an emergency that even today isn't taken seriously enough by doctors. CES is a type of spinal injury that occurs in the cauda equina (latin for horses tail). The true spinal cord ends at L2/3, and below this level is the bundle of nerves known as the cauda equina. These nerves control things like your leg movements, bowel and bladder, as well as other important things. The scary thing is that from the first signs of CES rearing their ugly hand, there are only 48 hours in which surgeons can do the decompression surgery and save the nerves from permanent damage. Unfortunately, like most others I've spoken to who've had the same complication, the surgery normally doesn't happen in time, and it leaves people with permanent nerve damage ranging from loss of bowel and bladder function, to full blown paraplegia. The even more devastating thing I've found out, is that some surgeons have this idea of putting off surgery until you can no longer walk, but the sad fact is that once you can no longer walk, it usually means that the nerves are damaged beyond their natural ability to repair.
My spondylolisthesis journey started what at the time felt very sudden and quick, but over the last 3 years I've put things together for myself, and realised that there were many times where I probably should've seen the doctors but didn't. From around 11/12 I was always getting pretty bad back pain in my middle and lower back, but my family always put it down to growing pains and the fact that I did a lot of sport. I remember in year 7 running the 1000m race and despite winning, going into the hall at school about 10 minutes after, and wanting to scream the place down because I was in so much pain. But I chose to hide the pain, especially once seeing a couple of people I knew would've had no hesitations in telling teachers I wasn't 100%. That pain continued on and off, and I used to have ice baths in a vain attempt to try and starve away any pain, as well as heat therapy. The pains weren't going away but because I was growing so quickly, everyone said it was growing pain. It wasn't until I was 17, and on one day in December 2014 when my gran was knitting me a cardigan that things came to a head. Gran had spent the previous 10 days trying to redo a part of the cardigan to get it to fit correctly on my back, but it just wasn't going. She'd pulled my top up and, there it was pretty much straight away, that she noticed she couldn't follow my spine. Worse, was that the guys on my ice dancing team had also noticed I was rapidly losing height. From August to December 2014, I'd lost 11.5cm in height. It was at that moment that gran put 2 and 2 together, and told me she was getting me to go to the doctors. Being near to Christmas, they decided to hold off on the x-rays until January. Then on the 14th January, I was booked in to have my x-rays that day. Over Christmas, the pain had gotten worse, and I couldn't skate to save my life because of the pain, so it was decided to upgrade the x-rays to urgent. The doctors had no idea of what they were looking for, or what the cause could be, but nothing could've prepared us for the phone call we received on 19th January 2015.
The 19th January started like any other day. I didn't have college that day, and gran was in the middle of doing some projects on the house. A couple of days before, she'd seen these beautiful light shades at Homebase, and wanted to show me them. We'd decided to go for some lunch, and then go to Homebase to look at them. Monday was always a gran and me day, since it was one of the days I had off of college, the other being Friday. We were out of Homebase just before 3pm, and had literally gotten back to the car when my mobile rang. It was my doctors. I don't know if I was stupid, or just naive at the time, but I just thought it would be the receptionists informing me that I needed to make an appointment, or that my x-rays were clear. Instead, it was my doctor herself that phoned me, and I instantly knew by the tone of her voice that it was serious. Before that day, I'd never heard of pars defects, let alone spondylolisthesis. Things I remember from that phone call were bursting into tears, hearing that I'd need an urgent referral to orthopaedics as well as the spinal surgeons, and being put on 16 hour a day bed rest. My gran took over the rest of the phone call from me, and she even had to tell me what it actually was I had, because I'd completely forgotten, having not been able to take it in on top of being told I'd need surgery. After that day, college was very much hit and miss, gran started taking me in purely to reduce my travel times so that I could be back on bed rest. I also stopped staying in college for study periods.
A few days after the diagnosis I'd been booked in for a scan on my heart, and that was where all hell broke loose. If you've ever had an echocardiogram, you've probably been put in that really awkward position where your body is being bent into all kinds of funny positions, or at least that's what it felt like to me. I walked into that scan almost normally, but I wasn't able to walk out normally. I thought at first that my pain was just restricting me, but overnight I lost my bladder function. My gran woke up to me screaming, and phoned the doctors. When the doctors phoned back with the words 'A&E now' we knew something serious had gone wrong. We got to A&E, and gran almost lost it with the doctors who didn't seem to understand what spondylolisthesis was. They had my MRI moved forward, and sent me home. That was the beginning of the complication CES taking hold. I won't go into too much detail as to what happened next, but it wasn't until 25th February that our worst fears were confirmed. The damage caused to, and by my spine, was permanent, and by this point it wasn't just CES, it was full blown SCI caused by a slip further up. The surgeons sat down with gran and I, and told us that any surgery now would be to stabilise my spine, rather than trying to repair the damage.
In August that year, complications meant an admission into St Georges in London, where a 2/3 night stay turned into an 8 day stay, and me almost missing Brett's step brothers wedding. When I was discharged from St Georges, the plan was to get me home, and within 4 hours the district nurses would come out to refit my catheter. That never happened. Instead, the day after I ended up being taken into the local A&E with the scariest complication I'll ever experience in my life, Autonomic Dysreflexia. I wouldn't wish AD on my worst enemy. I don't remember much from my first experience of it, other than being told by Brett afterwards that I was screaming in agony with a headache, my blood pressure was through the roof, doctors were rushing around, constantly trying to get medication into me, and on top of that, they warned Brett that at any moment, I could have had a cerebral hemorrhage. All of this was caused by the fact that in the 28 hours since being without a catheter, my bladder had retained over 2 litres of urine. Because of it, I have to self catheterise for the rest of my life, with the potential to switch to a superpubic catheter when I'm older if I'm no longer able to perform ISC. In February 2016, I had a bladder operation due to some complications where my ISC was no longer working 100% of the time. For a 20 minute operation, it took 6 and a half hours to get me off the ventilator, and a further 2 for me to come around. The surgeons even got Brett because I wasn't waking up. After that it was decided that right now, spinal surgery is far too risky for me, which is why I'm yet to have my spine fully stabilised. We also found out that my spondylolisthesis is congenital, and that was picked up purely by just how many of my vertebrae have the pars defect.
As part of this blog post, I also wanted to get other peoples stories for you all to read so you can see just how serious this condition is. One of those people is Nicole Myers, who is also a blogger!
This is her story:
I was initially diagnosed in 1992. I did not have that many issues with my back until I was 34. My left sciatic nerve was being pinched by the L5-S1 joint and irritated by a bone spur created by the misalignment. Since then, I have had two microendoscopy discectomies. Both were successful. I have lucked out with neurosurgeons and orthopedics. All of the people on my medical team, aside from some general practitioners, have all been wonderful. I had been called a liar numerous times or been told that I was “too young” to have something like this. My neurosurgeons and I discovered that I had likely had spondylolisthesis since birth. We also learned that my variation is degenerative. The fact of the matter is that they only buy me walking time. I have been frustrated with my body and my situation. Finally, I have come to terms with it. I have accepted my spinal disease, but I will not let it become me. In light of all of this, I have been writing more about my experiences, in my own words and putting them on my blog called Essentially Chronic; about my life with chronic pain and beyond.
Want a question about Spondylolisthesis answered? Ask below and I'll try my best to answer. No 2 slips are the same so I can only answer based on my own personal experience though.