I have been cybernetically augmented with my neurostimulator implant now 3 years in December. It was fairly difficult, rather painful and unpleasant at times, long waiting and even longer recovery. Nonetheless, it was a success FOR ME in what I had wanted; though others may not grasp my goal not being a complete removal or huge reductions in pain. People may see my unchanging limitations as something to feel bad about, but I most certainly do not. Because I know where it used to be, how hard I had to fight every single day. How hard it was to put a smile on my face to not show how difficult and painful everything was. Before my batmobiel, before my rollator. Before my neurostim.
You see, today my life cannot be further from that time, when everything was magnitudes more difficult. I fought like a trooper to do as much as I could, and paid the price. One single trip to buy some groceries, or to see my friend, would usually cost a week (often more) of flare. If I wanted to swim, it became so frustratingly difficult that I couldn't maintain it regularly. Shame too, because it was the biggest driver of my life! Swimming was where I found my power back, regained my confidence, asserted myself and found my younger self again. The younger me whose destiny was in my own hands. Those years of swimming, the fish growing up in Australia, surrounded by beaches and bush.
Swimming is an essential part of this story, my problem of needing to get around really came from my single-minded focus on getting to the pool. I had been swimming for a time in the rehab/revalidatie pool, but even though it is 500m from my place, it was too far, too difficult even trying public transport. I could swim that distance easily, but I could no more walk it than I could fly it. I was struggling to figure out what to do, looked into the pain revalidatie program and found it lacking in what I needed. I think it is always a good idea to get proper pain rehab. It is important to learn about the neuroscience of pain, and build up activity, observing and being aware about the emotional state on the physical perception of pain, non-catastrophising and minimised fear-avoidance. Yes, I've done this program in the past. I not only excelled in it, but I took it much further and beyond expectations - I travelled for 6 months on my own with no backup: a backpack, Pain and I in an odd trio. I live the model every day. In getting my neurostim, I needed specific problem solutions, such as ambulation, reduction of pain meds, more activity, more stability in pain levels. Pain was going to be with me for the rest of my life, I wasn't looking for a magical cure which could leave me miraculously pain-free. I needed something that could impact upon those areas, not teaching me stuff I've known for over a decade. Or worse, teaching me incorrect information while forcing me to go backwards in progress.
To be eligible for a Spinal Cord Stimulator, there are a few criteria that need to be met. I usually call it my 'neurostim', partially translational - "geïmplanteerd epidurale ruggenmergstimulator" is rather a mouthful. You need to have tried traditional pain rehabilitation already, as well as other treatment options (usually nerve blocks, medication etc.) which proved unsuccessful. This is wise in general, but in CRPS it usually is more advantageous to trial it earlier. In my case, I got mine in just within 3 years since I first had the spread. My chances were much lower of success, than had it been done within the first year. Once I made the decision to go for it, I researched as much as I could. I was committing to this 100%, come what may. I was prepared for failure, complications and permanent risk: further spreading of CRPS, no future MRIs ever again, multiple surgeries; risking paralysis, serious infections, lead breaks and migrations, rejection, complications and all sorts of frightening stuff. But I did everything I could to ensure the best chances. I gave up smoking, got better nutrition, extra vitamin C especially, swimming and extra core strength exercises in the pool and on dry land. I saw a psychologist to prepare myself, and researched as much as I could (trying not to freak myself out). Putting 100% effort into something means you know you've done your best; so if it doesn't pan out, or work as you planned, at least you did all in your power. Sometimes shit happens, but sometimes the sun can shine from one's arse too!
The indications are usually "failed back surgery syndrome" and CRPS, as well as some other chronic pain conditions, such as diabetic neuropathy or phantom limb. I don't know all the conditions, but then again, there could potentially be many more I have no idea about. Neuromodulation is a whole branch of medical technologies: from pacemakers for hearts; Deep Brain Stimulation in Parkinson's and epilepsy; other types of nerve stimulation, such as for bladders, bowels or other organs; TENS and other transcutaneous nerve stimulation.
Mine consists of an implanted pulse generator (IPG and battery) which is in my upper hip, wired up to a row of 8 electrodes which sits in my spine (epidural space). It isn't rechargable, so in 3-5 years will need another operation (hardware upgrade!). I have a remote controller, and can switch it on and off with a magnet. Travel is different, but with a wheelchair it was different anyway. I have a card, plus I wear a medic SOS dogtag or bracelet. The getting of it was a very long and drawn out process, one that I think people should be aware of beforehand. And what I found online was a lot of frightening complications stories, and a very different procedure than I went through. I don't know if it has to do with the country I'm in, or if mine was different. However, the trial stimulator placement was by far no minor surgical outpatient procedure. It was neurosurgery that required at least an overnight stay in hospital in my case. Good thing too, because it was a very difficult night.
Once I had chosen this path, researched the best place to get it done here in NL, (Belgium and Germany were options, but costs would have blown up severely). I travelled the nearly 2h to a German border city, saw my neurosurgeon, nurse specialist and hospital. I felt a sense of peace in knowing that if it was meant to be, it would be. There was a certain degree of faith, in trusting that it would all work out. My travel spirit in believing in the impossible. Before getting the trial; in addition to the revalidatie requirement, there was a medical psych evaluation. There needs to be no psychological origin to pain - not because it is a bad thing (it is not only very real pain, but is also very treatable pain) but because it is unlikely to work for them. This is a very expensive surgery, it has many lifelong restrictions and it really cannot be entered into lightly. They don't do it unless there is a good chance of success, which makes sense. You need to not only demonstrate you understand the risks and limitations before going ahead, but have clear understandings about what it can and cannot do. It isn't a cure, it cannot change the CRPS itself. It won't suddenly make me undisabled, and I had to work hard to get the best result. While I felt overprepared, it was a valuable learning experience. I had very clear goals, clear plans to achieve them. Real plans, quantifiable steps. I was doing all I could. I was running out of time, I would only have one shot at avoiding what happened to my arm. I had to squeeze every millimetre of chance out I could get.
Preliminaries: Medical Psych Evaluation and Pre-Operative Screening:
The medical psych evaluation was quite interesting. I got to hear my partner's admiration, something I never quite understood and never fail to feel surprised to hear. I forget so easily that he is the one who is watching my struggles, and powerless to help. I can't imagine what it must be like, how difficult and traumatic it can be to be the witness. I rarely think about how it must be for others, which I understand how self-involved it sounds. Pain takes up too much of my brain capacity unfortunately. The medical psych evaluation was also to ensure I gave informed consent; that I understood the long term risks and limitations of going ahead with this surgical intervention. How I felt about having a piece of technology implanted in my body permanently. That was all fine by me, plus I gave her my own preparatory plans (my swimming, working on core stability and strength) as well as my steps for recovery while keeping within the restrictive rules for the first 3 months - that is 12 weeks in total. These rules need to be strictly followed, otherwise you risk dislodging the electrodes from the best place (sweet spot) and it is unlikely to be able to be placed so exactly again. You cannot raise your arms above your shoulder-height; you cannot bend, twist, push, pull anything, carrying nothing above 2kg; no sleeping on stomach, twisting neck too far - no exception, for 3 months. This is the time it takes for the electrodes to be fully scarred into place. While you have the trial leads in, you cannot shower, you literally have cords hanging out of your spinal column, next to your spinal cord and a direct fluidic path to the brain. They prescribe antibiotics, but there is a risk of infection which could be quite serious.
The psych evaluation was much easier than I had imagined. I had overthought my whole strategy! Not that there was anything bad about having structured plans, but it was the first of many times where I would get a strange look from whomever I was speaking; a startled and surprised look in the eye that the appointment went differently to what they expected. I am still the same oddball I've always been!
The pre-operative screening was also fairly straight-forward. It was a long wait in the waiting room with many people who were also getting theirs done. Like sitting in the lounge of an airport, the curious picking out people's destinations from appearance; it was an amusing game of trying to figure out who was getting what done to them. Once I got called, the woman pulled out her booklets explaining the hospital itself, and the anaesthesia, telling me that they usually give patients the option (general or local with or without sedation), but in my case I didn't get a choice - it would have to be done under spinal anaesthesia without sedation, as I needed to be alert to give feedback. Yep, I know... But they took my blood pressure, height and weight etc., and the anaesthetist prescribed me prednisone for before my second surgery (which would be under general anaesthetic, or 'onder narcose'). Asthmatics can have trouble with artificial ventilation, so preempting that with oral steroids and nebulising was on my list of fun. Just what I needed - extra dramas! And this was before the big asthma hospital sagas, when I didn't think much of it!
With all that completed, I was expecting my mother's visit. While I didn't have a surgery date (I would be called up), I figured there wouldn't be too long between the POS and the surgery date. They weighed me - I could easily put on 5-10kg if they waited too long! My mother had planned to come over to assist us while I was in between surgeries. All those rules, plus external wires and cords meant that having my mother's gentle nursing care would be invaluable. It also meant that my partner could still work. Well, we spent nearly 4 weeks together, had some great star trek time and wandered the city. But still no call. It was in the days before she was due to fly back, when I got the call. I was to be at the hospital in 4 days time, at 7am, fasting from the night before. It was really going to happen. Was I going to be brave when in the moment? Would I cry? Time would tell - engage!