My original intention was to sit down and write the whole experience in a clear and orderly fashion. I even did a series of paintings to illustrate my journey. I wanted to write down exactly what would have helped me make my decision back then (pros and cons, observations etc). I may some other time, but the painting of these moments gave me more to ponder, to explore beyond the factual sequential steps it took. It gave me more questions, more thought waves to surf and ride. It needed its own post beforehand, because its implications are far wider than I imagined when I sat down to sketch out my memories of moments, my self-portrait snapshots from the cheap seats.
Surgery no. 1: Placement of trial stimulator electrode leads in my spine:
This was perhaps the most intense moment of my life. I had prepared for it physically (by working on my core strength for months) and psychologically. It was an incredibly emotional moment too, as I was hoping so hard that this would be successful, but knowing that the chances for success were lower for me. Given that I had already had the CRPS spread in my legs for nearly 3 years (under 2 years gives the best chance of success), and that it was a spread from one place already from a relatively minor fall, it could also spread in unaffected places from trauma (such as the surgical site). I also knew that it would hurt. Spinal anaesthesia is different from an epidural; it was localised anaesthesia, but I still needed to be able to give feedback on correct placement of the electrodes: the stimulation needed to overlap the painful region completely. This meant that it was inevitable to feel some 'discomfort', which is one of those euphemisms for pressure, unsettling sensations, and of course - pain.
This was an image burned into my brain like a photo, tinted by my fears and anxieties. I'm sure my heart was racing at that moment, where I realised it was on. I couldn't back out now, no changing my mind! On my left in that image, was the anaesthetist; the woman on the right was my neuromodulation nurse specialist telling me to take deep breaths and remain still. My CRPS hand was in its dystonic contracted position (as usually happens when I'm tense, my spastisity comes out more)
The internet research I did prior, the surgery I had read about went down in a completely different way to mine. I don't know if it is because I was in the Netherlands, or if it was my neurosurgeon's technique that came from decades of experience (my nurse specialist told me they had been doing this since the late 90s, early 00s, so I really was in the best and experienced place). This was by far and in no way an outpatient day surgery, with sedation and being woken up mid-surgery and heading home afterwards. This was rather major neurosurgery, no sedation and at least an overnight stay. There was nothing to distract me in that moment, aside from the gentle words and updates from my nurse and anaesthetist. There was no escaping the fact that I was being cut into, poked, stabbed and electrically charged. All I could do was breathe, count the seconds, minutes and dream of a cup of tea back upstairs in the ward.
The placement was relatively quick, I believe. Perhaps the timing became fuzzy in the overwhelming moment of time. I remember being told by the surgeon to expect a "crawling" sensation as he slipped the electrodes into my spine. "Kriebelen" roughly translates to a crawling, itching sensation, but it isn't the word I would have used. It was a very uncomfortable crawling and alarmingly invasive probing feeling travelling up inside my spine. It hurt. It hurt a lot actually, but it was a more disturbing and horrifying feeling than pain itself. Pain has different flavours of sensation. These were more disturbing forms of pain, given the knowledge of what was going on. What was quite painful, though, was when he tunneled the wires to come out my right side. He did tell me it would be a sharp feeling, so I was somewhat prepared for the harpooning. And 'harpoon' is probably the best description. It was definitely more than pressure, or a sharp feeling of an injection. But while it was quite painful, it was done quickly I guess; at least this part. This was all temporary pain for a greater gain! There's no place like home....
Neuroscience of pain reflections on this moment...
What I realised in painting this memory, I wondered how much my expectation of pain and my fears of the surgery itself played into my perception of pain in that moment. Had I perhaps over-prepared in my usual manner? Could I have felt less pain had I no idea about how the surgery would go down; those queasy surgical intricacies that most people don't want to know? Did my knowledge and fears work against me in that moment? Had I been less fearful, less expectant of pain, could my pain experience have been more or less tolerable? How much I allowed my emotional state to play into my pain experience? It is an interesting idea, really. I know how much my emotional state plays into my chronic CRPS pain; that pain is worse when I am feeling strong emotions. Pain is always there, but my attention and focus on things I enjoy means that Pain takes the backseat. If I am angry, frustrated and furious, the pain is much more unbearable. Pain perception is such a complex and multi-faceted experience, constant and unchanging baseline pain means I am able to observe these subtle differences with relation to emotion. These were acute pain mechanisms, which work differently to chronic pain. Nonetheless, I still believed that preparation (such as women preparing to give birth) would lead to less fear, and less pain. I certainly expected it to be a difficult day and overnight in the hospital. I was prepared to tolerate it. But...
- Could my pain experience have been different had I not been so scared/fearful?
- Was I in more pain during the surgery because I expected it to hurt?
- To what extent was my pain during the surgery due to my mental/emotional state?
- What could my experience of pain have been had I expected to be fully anaesthetised and unaware?
This fascinates me. It is an interesting idea, how far emotions play into pain experiences. Knowing the neuroscience of pain is something I rarely think about after 16 years. I am only starting to realise that I am actually in the minority of pain patients who know what goes on with pain, which I find sad - not to mention contributing to greater suffering and disability. Understanding the mechanisms of pain was a godsend to me. It gave me hope, regained confidence in my ability to not only withstand pain, but to break through any barriers Pain set in my way. Pain was not damage, so I needed to work with the constant false alarms while being careful to not miss a real alarm. I didn't fear Pain, haven't for many many years now since we divorced! To be honest, I think my lack of fear or bother about pain (and feelings) is very difficult for others to understand. I am so used to hiding so much of my life experience that I forget that others may not see things in the same way and may be alarmed at my cold assessment about something they find distressing just to hear about, or know of its existence. I find it more useful to examine it as a phenomenon, rather than an event. Especially while painting these moments, I learn so much more about my experience of pain in that time
Nothing in my experience was really what I expected. For a start, I felt quite unwell in recovery. I was painfully shivering with a slight fever, so they gave me paracetamol. Swallowing it from lying flat on my back wasn't a lot of fun, but it was the highlight! I needed a catheter, because I couldn't urinate on my own (a common side effect of spinal anaesthesia). That was an experience I hoped not to repeat. Anyone who's had a catheter put in while awake and conscious will understand what I am talking about. Unfortunately it wasn't the last. Back up in the neurosurgery ward, I was uncomfortable, it hurt - a lot, but I was really just glad I got through the difficult placement part! Seeing my partner and mother there was really great. I was so glad to have my mother there from the other side of the world after such an overwhelming experience. She has been through it all with me, the early years of CRPS, not to mention everything else over the years. After dreaming of food all day and all the food I was going to eat when I could, I could barely stomach a buttered fruitbread slice! I had to lie fairly still for a while, but when I could sit up, I got the chance to examine the cords connecting my internal wiring to the external device.
It was a very difficult night in the hospital once visiting hours were over and I had nothing to distract me from the strangeness of being there, and all the emotions that the overwhelming day had brought. I don't know how much of the memories of that night was actually real or not. It was a strange sensation of unreality. The cranky nurse ended up being the best needle-giver, after she told me off for not telling her I was in pain during one of her middle-of-the-night visits. I was in pain, of course. But in my position, after the surgery itself, and the years of living with pain: what actually defined 'pain'? I know that chart off by heart, all the VAS stuff they all seem so concerned about, but it has long lost its relevance to my own experience. I wasn't on that brink of wishing my existence to end (my 10/10) but I sure wasn't comfortable either. How many smaller increments sit between 8 and 10 for a CRPS patient? Pain for us needs a new scale, an adjunct scale to qualify the high score. "It's an 8, but manageable" or "It's an 8 and I'm feeling distressed because I have too many different pain signals at once".
Somehow, like every other painful night, the morning came eventually. It brought new nurses again, and a brand new day. My first full day with cybernetic implants; my very own version of Garak's cranial implant in my spine. Or Borg technology augmenting my own. I cannot decide between the two, but why should I? Both are relevant and linked to favourite characters. Garak's was to avoid the pain of being exiled; the Borg were to enhance and modify the biological tissue with technology. Unfortunately, I was still hooked up to an external generator, wires out my side connecting my spinal and brain fluid rather alarmingly to the outside world. It was inconvienient to say the least, those long cords were ridiculously in the way! I would have loved a shower, but that was not going to happen in the coming few weeks. I had to re-embrace my backpacker days of living on trains! The nurse asked if I needed help washing. But that also wasn't going to happen while I had any say about it. Until I realised my predicament... no bending, no twisting, no arms above my shoulder. The nurse helped me with my lower legs and feet. And for the first time in years, I didn't want to scream when someone touched my legs. This was something. This really could be it - beyond my wildest hopes!
I was really Borg now. Resistance is futile! Nanoprobes were taking over. Whatever happens during the next week, over the next few months; I was going to do everything ridiculously and meticulously right. I was not risking this incredible chance I had. Failure was not an option. I wanted my life back!
It wasn't a comfortable drive home. I still felt very uncomfortable, invaded; something was alarmingly foreign inside my body. That itself didn't bother me. What was annoying, was feeling one of the connector pieces under the dressing. It hurt, all the places I had been punctured, cut into and poked were filled with strange 'normal' pain sensations that competed with my own normal pain. The bombardment of the two different types of pain gave me a headache. And I had a real headache too, from the surgery. I was tired, cranky and a unsettled by the new reality, with the memory of all that had happened. I was also a little scared. Of all the things that could go wrong in this huge gamble I had insisted on taking. But for that small chance that everything had worked kept me hopeful and feeling that it had all been worth it. Even while in this state: all wired up and taped shut .
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