Back to Life without the Surgeon’s Knife: A Personal Perspective

Almost 3 years ago I could barely walk and I was in permanent pain. I couldn’t lift my right foot to be able to walk and I couldn’t sit down for any length of time. And sleep? At best I could get around 2 hours if I had taken enough pain relief. So, how did I avoid the surgeon’s knife and get my quality of life back? Let me share with you the story of how I avoided (at least for now) a major spinal operation and significant disability.

The Pain

It was a typical cold February morning, just starting to snow. But that isn’t what bothered me about getting to work. It was the excruciating pain in my back that had me on the edge of screaming. I’d been pacing most of the night, not able to sit down, lie down, or stand up without pain. How do you begin to describe this level of pain to someone? This wasn’t any ordinary pain. It felt as if someone was plunging a hot knife in my back and running it down my leg, and then wrapping it all up in barbed wire. You might think that all sounds melodramatic. But, if you’ve ever had back pain or sciatica, you’ll know exactly what I mean. I’d had back pain before and, following a fall the previous year the pain had started to increase. But this was a whole new world of pain.

Still, like an idiot I went to work, feeling the pressure to deliver on some planned training. As it was, half the class didn’t turn up due to the snow! I did make it through that day, stumbling through the door in the evening to grab the nearest pack of Ibuprofen. Inevitably, the weekend brought more pain. I even thought of presenting myself at A&E. But come on, who wants to go to A&E when the nightclubs are turning out? So, by the Monday morning, sleep deprived and sobbing, I knew it was time to get help. With a background in nursing I knew we were now in serious territory with the level of pain that I had. Even our fearsome GP Receptionist didn’t question me when I called for an appointment. I think she could hear the pain in my voice.

The GP didn’t hesitate to refer me to a specialist and get some proper pain relief on board. A dose of co-codamol and amitriptyline for nerve pain gave me blissful relief. And for a few hours I felt almost normal. When the pain returned I wept. So began a cycle of pain, drugged sleep, pain, drugged sleep.

The Picture

The words ‘there’s a lot going on’ echoed in my head when my GP called with the results of my first MRI. The result? One lumbar disc had herniated (L5) and L4 was ‘bulging’. There was also further damage below that. At a later date the suspected nerve damage was also confirmed. Not only that, a thoracic disc was also out of alignment and pressing on my spinal cord. The spinal surgeon was pragmatic but kind. He couldn’t guarantee he could save the damaged nerve and he pointed out to me just how risky it was to operate. At worst I could be paralysed. Added to that, the operation wasn’t guaranteed success in decreasing pain. I was in one way relieved. The thought of major surgery on my spine terrified me. But I also saw my entire life and lifestyle diminish in that conversation with the surgeon. I’d be disabled for life, I wouldn’t be able to walk my dog or continue with a fulfilling career.

How fortunate then that my surgeon took a more conservative approach. His plan involved a combination plan of pain relief, physiotherapy and exercise. He also mentioned that weight loss needed to be part of that plan (as if things could get any worse!).

Make no mistake; the implementation of the plan was painful and depressing. At times it was almost farcical. My husband often caught me in a praying position trying to relieve the pressure on my back. I lost count of the times I got stuck in chairs or in the shower because I couldn’t move from one position to another. And then there were the days when everything just got too much and I gave in to the pain and sobbed.

The First Steps to Recovery

The first obvious step was to relieve the pain I was feeling in my back and my leg. The co-codamol and amitriptyline were helping as was a drug called Gabapentin. It’s a drug actually used to treat epilepsy but it’s effective for nerve pain. The downside was that I felt like I was living in a fog. My brain did not seem to want to function, but it was a trade-off that was worth it. Long term though, I knew it wouldn’t work for me.

The spinal epidural for pain relief seemed like a good addition to my treatment. Using an anaesthetic ‘carrier’ drug, the anaesthetist can administer steroid anti-inflammatory drugs. They directly target the area of pain but it isn’t without risk and relies on the anaesthetist’s skill to inject into the right area of the spine. But for me the instant relief from pain was worth it. To be able to lie down flat, to sleep through the night and to wake pain free was wonderful. Sadly for me it only lasted 3 months — believed to be the result of my disc ‘moving’ once more and creating more pain. That window of 3 months did give me time though to get started on a serious physiotherapy programme. The journey to recovery had started.

It’s New, It’s Neuro and It’s Painful

A leading neuro-physiotherapist assessed me before putting me through my paces. It was exhausting! The programme was innovative but gruelling. When I started the exercises I had no core strength at all! And as for balancing, just forget it. I felt like the exercises were sheer torture but I had to do them 3 times a day every day. It felt like I was climbing the proverbial mountain.

My strength began to improve as I got better at the exercises. But it took time and I lost my job which brought me to an all-time low but I pushed onward. I needed to return to work, to drive, be pain free and enjoy walking my dog.

Enter the incredible technology that would aid my recovery, functional electrical stimulation (FES). We affectionately referred to this weird and wonderful device as ‘little robot’. It’s a clever piece of equipment that uses electrical impulses to stimulate the nerves and activate the weakened muscles so that I could walk better and decrease the risk of tripping. It was the turning point in my treatment, and combined with more targeted stretching exercises I began to make real progress.

The Present Picture

So where am I now?

It took more than two years of physiotherapy and exercise to get me back to something that resembles normality. I still have to manage my pain and be very careful what I do and there have been setbacks, sometimes serious. But, I can now walk two miles without a break on a good day. I’ve reduced my weight by over 16kg and I have recently returned to part time work. In any book that’s a good result.

I still haven’t returned to wearing heels, but I guess sometimes you can’t have everything! The three key things that I’ve learnt from this experience are:

Don’t ignore worsening back pain. Go to your GP and seek a referral to a specialist and/or physiotherapist.

Keep moving if you can but learn to listen to what your body is telling you. Some days I could only move around the house for essential bathroom visits.

Consider alternatives to surgery and do your research on what’s available for treatment. I cannot ever thank my spinal consultant or physiotherapist enough. They were both brilliant and are leading experts in spinal injury rehabilitation.