It feels as though I’ve been hiding under a rock for the past little while, even on my regular social media haunts (Twitter and Instagram). That’s because I’ve been dreading a specific medical appointment. It was with the specialist physician who’s treating my neuro-inflammatory and autoimmune disease.
Not because he’s unpleasant, or difficult to deal with. He’s actually very kind! What I was dreading was the reason we were going to meet again. The goal of our appointment yesterday was to discuss potential next steps in the treatment of my CRPS; Complex Regional Pain Syndrome.
To set the scene a bit, I should mention that I’m treated for CRPS at a multidisciplinary chronic pain management unit (PMU), or pain clinic. This clinic is housed within the large hospital network of a world-class university.
Along with discussing possible next steps, to try to tame my disease, we would also be making some decisions. About which – if any – treatment(s) we should try next.
We’d agreed to wait until I’d finished a clinical trial, or research study, to talk about any next steps. That’s because we had both hoped that the experimental medications would help with my symptoms. They didn’t.
In preparation for this appointment, a few months ago my specialist had asked me to start thinking about Spinal Cord Stimulation (SCS) as a treatment option. If you’ve heard of neuromodulation, it’s the same idea. One of the things I love about the PMU team, and my family physician, is that they all believe in making decisions with patients – not for patients.
So for us to be able to have a serious discussion about this surgical option, I needed a decent understanding of what it entails. But I’m having trouble with cognitive issues – concentration and focus – so I knew that I’d need plenty of time to read about this possible treatment. To try to wrap my head around it, so to speak.
The PMU understands that patient involvement is really important in treating these types of complex pain conditions. They also know that I have a background in healthcare and clinical (medical) research, and that I usually want to be even more involved in decision-making than many other patients might want to be.
So we’d agreed that, while my specialist evaluated the medical impact of SCS for my case, I’d evaluate its impact on patients. I’d reach out to other patients with CRPS who already had spinal cord stimulators implanted, using my own contacts and social media. Then I’d ask them about their own experiences with these implants.
This is a decision that could have a significant impact on my quality of life, and I know that any surgery involves risks. So it was very important for me, as a patient, to gather as much information as possible before we made any decision. Other patients can be a really helpful source of information for this.
After all, that’s why I write about my patient journey, in the hope that sharing my own patient journey can help someone else. Here are some highlights of what I found out about SCS. In the interest of transparency, my husband works at one of the companies that makes SCS; nothing I’ve written below, though, is from a company’s website or information!
When you see the acronym RSD, that’s the old name of CRPS; Reflex Sympathetic Dystrophy. Two names for the same disease, to make things even more confusing! Spinal Cord Stimulation (SCS) is a:
method of pain control that works well for some patients with chronic intractable pain due to RSD/CRPS. Spinal cord stimulation (SCS) uses low intensity, electrical impulses to trigger selected nerve fibers along the spinal cord (dorsal columns), which are believed to stop pain messages from being transferred to the brain.
SCS replaces the area of intense pain with a more pleasant tingling sensation called paresthesia. The tingling sensation will remain relatively constant and should not hurt. There is some experimental evidence that SCS may enhance the flow of blood to the affected extremity by blocking the sympathetic nervous system.”(1)
To be clear, this would require surgeries to implant stimulators into my spinal cord, so it’s not without risk. The first surgery would be to implant a temporary electrode, outside my spinal cord. This would be a test, for about 10 days or so, to see whether the SCS would provide any relief of my symptoms.
We’d obviously want to avoid doing the full surgery, with all its risks, and then find out that the SCS didn’t work at all for me! Because of the potential impact on quality of life, and also because of the idea of having something foreign implanted into a patient’s body, there were also psychological aspects to consider for SCS:
Given that SCS is a relatively invasive, costly procedure and given that RSD / CRPS patients are often desperate and frustrated, a baseline psychosocial evaluation that addresses pain management issues should be considered.”(1)
Then, if we went ahead with the temporary electrode and it did provide relief of my CRPS symptoms, a permanent SCS would be implanted. Some patients even need to have more than one SCS implanted. This was all quite a lot to think about, and no decisions about surgery should be taken lightly.
One of my very first concerns that the possibility that the constant tingling sensation from the SCS, the paresthesia, could have a negative impact on my quality of life. CRPS affects my right hand and lower arm and, of course, I’m right-handed. For some reason my thumb has never been affected by this disease, which has made life a lot easier for me than if my entire hand was affected.
If the SCS created constant paresthesia in the only truly useable part of my right hand, this could mean that I’d be left unable to use my thumb. This was a real concern for me, because it had the possibility of making things worse for me than they are already.
As for what I heard from other patients, within my circle of CRPS contacts, I was surprised to receive negative comments about SCS. Most of those who had CRPS in their lower body said that the SCS had really helped them. But the patients who had the implants for upper-body CRPS weren’t as impressed with the results.
With my background in research, I also read quite a few medical journal articles about SCS. This was difficult, because I’ve been having some cognitive issues; I had a re-read them a few times, and still missed some of the details. Not something I’m used to, so that was frustrating.
To bring us back to my appointment yesterday, with my specialist, here’s a photo I took at the side entrance to the hospital ‘-) Based on what I’d found out about SCS for upper-body CRPS, I wasn’t sure it was a good option for me. So I was somewhat apprehensive about discussing this with my specialist. What if he thought it was the best next treatment step, for me?
Would I feel that I should change my mind, to at least try the temporary external electrode – if he thought it was a good option for me? I wouldn’t want to refuse a treatment that he believed could really benefit me… When he called me into the examining room, my specialist had two other people with him; a family physician and a psychologist.
I did mention that it’s a multidisciplinary PMU, right? We talked at first about how I was doing in general, and how the clinical trial had gone. We were both disappointed that it hadn’t reduced any of my CRPS symptoms.
Then it was time to discuss the potential treatment options. Some of them we’d already ruled out, during a discussion a few months ago. For example, we couldn’t keep doing full-body infusions of lidocaine, ketamine, or other anaesthetic medications – because of their likely long-term negative effects.
Also, just like the invasive nerve blocks, the symptom relief was only temporary; lasting from a few days to a couple of weeks. And when the pain returned, each time, it was devastating. So we needed to bear in mind the psychological aspect of that, with repeated long-term treatment.
Most patients with CRPS end up being diagnosed with depression, but so far I’ve been spared that additional burden. My PMU team is well aware of this, and does their utmost not to propose any treatments that could trigger a depression or other mental health issues.
As always, my specialist asked for my opinion on the treatment – before giving his own thoughts about it. So… I told him that I’d gotten feedback from other CRPS patients, and had done a lot of reading about SCS. I explained that I had doubts and concerns about the SCS surgeries, and about neuromodulation for my specific case of CRPS.
I wasn’t sure what to expect, as his reaction. I’d been worried that he might be surprised – or even disappointed – that I wasn’t enthusiastic about this option for me. But what he said was:
“Good – so do I, for your condition. Have concerns. I haven’t been able to find good evidence for CRPS in upper body. And I suspect under-reporting of negative results…”
We talked about SCS for a while longer, because he wanted to be certain of our shared decision not to proceed. He offered to set up the temporary electrode, which would be done at a different hospital, a neurological institute.
But we agreed that each of us felt that the risks outweighed the likely potential benefits. This is called a risk/benefit analysis in my field; bioethics. For example, one of the Clinical Practice Guidelines that I had read, or tried to read, about SCS said that:
Treating RSD / CRPS with SCS poses unusual clinical and technical problems. RSD / CRPS tends to be an unpredictable disease from a technical standpoint. The need to focus SCS on the most painful region must be kept in mind, which is more difficult in RSD / CRPS, because the location of the worst pain may change.
Furthermore, the pain from RSD / CRPS may spread to distant parts of the body, requiring multiple successive implanted stimulators to cover the largest possible area. Therefore, even when RSD / CRPS is limited to one extremity, it is wise to widen stimulation to zones to which the pain might spread…
“Because of the risks and high costs of spinal cord stimulation, the treatment is reserved for severely disabled patients.”(1)
And that decision left us with… no real treatment options. We’ve reached an impasse, a dead end. Which means, more or less, that my current condition is about as good as it’s going to get. My medical prognosis is now “unlikely to resolve”; my disease state is considered permanent.
Even though I’m relieved that we’re not going to proceed with the surgeries, I’m having a hard time adjusting to the idea that it’s time to give up hope of some new miracle treatment. That I should try to wrap my head around the idea, after fighting this disease for over 3 years now, that there’s no ammunition left. Nothing else we can try to fight it.
Most heartbreaking is that fact that there are no treatment options left that would allow me to go back to work in the near future. That’s the worst part, for me. I had what I’d describe to my friends as my “dream job”. Not something I’d just fallen into, but a role that was a culmination of all of my education and experience. Bioethics, philanthropy, clinical/medical research… all of it came together for this one job.
Not only were we discussing treatment options, in a way we were also discussing my future. The possible end of my career, of what I’d been working towards my whole life. So it was helpful to have the psychologist and the family physician in the examining room with us.
I needed all the support I could get, to deal with the decision that SCS wasn’t a viable option in my case. It wasn’t entirely unexpected, but as I told them: “My mind understands the reality, but my heart doesn’t want to accept it”… and then I started to cry.
Because I’d been hoping, all along, for some magical treatment that could get me back to the job I loved. In real life, though, magic is hard to come by.
References:
(1) Anthony F. Kirkpatrick, Editor; Chair, Scientific Advisory
Committee. Clinical Practice Guidelines: Reflex Sympathetic Dystrophy / Complex
Regional Pain Syndrome (RSD / CRPS). The International Research Foundation for
RSD / CRPS. Online. 01 Jan 2003. Web:
https://rsdfoundation.org/clinical-practice-guidelines.html