Spinal cord cyborg? (15.02.2019)
Three weeks ago, I met with my specialist physician; to talk about the relatively rare autoimmune & neuroinflammatory disease that I’ve had since March 2016.
I’m very lucky to be a patient at a multi-disciplinary pain management unit (PMU), within a large university’s network of hospitals & research institutes. This gives my treatment team the ability to offer therapies that aren’t available in regular hospitals.
The goal of this meeting, with my specialized doctor, was to consider possible next steps for dealing with my disease.
The condition is Complex Regional Pain Syndrome (CRPS) and, like many chronic nerve-related diseases, it frequently results “in significant functional impairment and disability”.(1)
It’s also difficult to treat, because each patient ‘presents differently’. That means that each individual patient will likely have a different set of the long list of possible CRPS symptoms. So treatment plans have to be tailored to each specific person with the disease.
Many of the treatments used for CRPS were developed for other diseases. Because of that, they may – or may not – work for a person with CRPS. There’s often a ‘hit or miss’ or ‘let’s see if this works’ approach to this disease.
“Though a variety of treatment modalities have been proposed for treatment of CRPS, a significant number of patients experience unsatisfactory pain relief and/or have adverse effects from existing pharmacological or neuromodulatory interventions.”(2)
This is why it’s so important for me to be able to talk about possible treatments with my specialist. In some ways, what we’re doing is guessing whether something will work – for me. Based on what we each know about my specific case.
He understands – and respects – that I’m an expert in living with my CRPS; my specific set of symptoms. That I’ve been able to figure out that certain approaches work better than others, for my own version of this condition.
And that I’m the best judge of what’s important to me; what my goals and plans are. For example, right now, my goal is to find a way to get back to work; because I’ve been on medical leave for almost 2 months.
And I know – and truly respect! – that he’s an expert, even within this specialized field of medicine. He has treated other patients with this condition. And his entire career has been focused on helping patients deal with chronic pain; through both treatment and research.
Between the two of us, together, we’re looking for the best way forward – or maybe the ‘least bad’ option. Because none of the options are great, and I’ve already tried – and ‘failed’ many of them.
By the way, ‘failing’ a treatment doesn’t mean that a patient did something wrong; it means that the treatment didn’t work, for that patient. This is sometimes called a ‘treatment failure’.
I’ve received care at two different hospitals for my disease, the first for only 3 months. Some of the treatments we’ve tried include:
- Anti-convulsant medications
- Pain medications
- Other medications
- Stellate ganglion (nerve) blocks
- Bier (or IV) blocks, with physiotherapy
- Axillary brachial plexus (nerve) blocks
- Infusions of anaesthetic products (through an IV tube, in hospital)
For CRPS, some of the most commonly tried medications:
“include non-steroidal anti-inflammatory drugs, corticosteroids, anticonvulsants, antidepressants, dimethylsulfoxide, N-acetylcysteine, transdermal patches (lidocaine, capsaicin), intravenous infusions…”(2)
We’ve more or less gotten to the end of this list, at least for the options we were willing to try. So one of the options we talked about, at our last meeting, was spinal cord stimulation.
Called ‘neuromodulation’, the idea is that a small electrical unit (or 2) would be implanted into my spinal cord. With a battery pack implanted in another location. After the surgery, each unit would send electrical signals to my brain, to try to fool it into thinking the symptoms aren’t there.
“Neuromodulation approaches including spinal cord (SCS), dorsal root ganglia (DRG), and peripheral nerve stimulation have been used for chronic pain syndromes with traditionally neuropathic but more recently nociceptive pathologies including failed back surgery syndrome, CRPS and other neuropathic pain syndromes”.(2)
So… I’m thinking about it for a few weeks. Then we’ll meet again, to discuss the questions I’ve thought of. I already have concerns about the surgery itself; risk of infection, internal scarring, recovery time, rehabilitation.
And I keep thinking of more questions about the whole idea; would it work for my specific case? My thumb isn’t affected by the disease; would the electrical signals cause (new) pain there? Would I have to give up any of the sports that I’ve fought to keep doing, like cycling?
Even little things, like how often would the batteries have to be changed? Is it a new surgery each time?
I’ve also reached out to people I know, online, who have CRPS; to ask about their experiences with neuromodulation. If they know of other patients, with cases similar to mine, who’ve had these implants.
Back in early 2016, I spent 3 months trying to get a different specialist to listen to me; to even acknowledge that my clinical signs & symptoms were the start of a new condition or disease.
It seems incredible to me that – for the same disease! – less than 3 years later, I’m considering whether or not to become a ‘cyborg’. After 3 months of being told to stop exaggerating, it turned out to be… this.
(1) David Clark, J et al. “Autoinflammatory and autoimmune contributions to complex regional pain syndrome” Molecular pain. Vol. 14 (2018): 1744806918799127. Online. Accessed 30 Aug 2018. Web: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125849/
(2) Yasmine Hoydonckx, Matteo Costanzi, and Anuj Bhatia. “A Scoping Review of Novel Spinal Cord Stimulation Modes for Complex Regional Pain Syndrome.” Canadian Journal of Pain. 30 Jan 2019. Online. Accessed 30 Jan 2019. Web: https://www.tandfonline.com/doi/full/10.1080/24740527.2019.1574536