Where the hell have I been?
Many things have happened since returning from Zambia. One significant event was an increase in pain levels for a few months. Somewhat ironically I’ve been so preoccupied with that and with work and also doing DIY, that I’ve neglected blogging about it. Well, not completely. You might have seen a post I published earlier. It listed the posts I had in draft and published randomly here but not through other social media platforms. This one really does bring me up to date though.
So what’s with the pain?
The increased pain I experienced could be down to a few things, or a combination of them
- The accident I had at the Victoria Falls left me bruised internally as well as the more obvious external bruises and grazes
- I was a lot more active whilst in Zambia, despite taking a few almost completely “chill by the pool” type days
- Since returning I have been doing a mixture of office based things and outdoor DIY – painting etc – which could have exacerbated the pain
I did worry slightly that the accident might have dislodged the leads and/or paddle electrode. So I contacted the neuromodulation team. I had a series of conversations and appointments.
A round-up of recent appointments
19/05/2025 – Emails with neuromodulation
Explained accident and subsequent increased pain. Advised they would typically wait for about 4 weeks after a fall/accident before reviewing the device. Continue pain medication, taking extra when required, as advised by the pharmacist
03/06/2025 – Emails with neuromodulation
Explained ongoing pain and needing to take regular extra medication. I also noticed increased over-stimulation for the first 30-69 minutes after getting up in the morning. This occurred with even quite small neck movements. Some mornings it was almost unbearable when I looked down to the sink whilst brushing my teeth. However, an hour or so later, I could put my chin almost on my chest. Only then would I feel the stimulation. Lincy discussed this with Mr Mundil and he will arrange an appointment with me
23/06/2025 – Physio review
After some persistence, I finally had a visit from the Community Neuro Rehab physio team. There were two team members—a senior therapist who appeared to be mentoring a colleague named Harriet. After reviewing my history and discussing my goals for physio (apparently walking normally isn’t a realistic expectation! 😜), they suggested focusing on two main areas, but not at the same time. First, they want to work on my neck and upper back, providing effective exercises to improve flexibility. Second, they plan to address my balance issues. Harriet will be following up with me, but they need approval from Mr. Mundil before I begin any exercises or progress further.
24/06/2025 – In person review with Mr Mundil
I explained the situation, and he carefully examined the surgical sites for any signs of infection or other issues. He recommended that we meet with Medtronic to conduct some tests on the device. The original Medtronic technician, Sam, has since left, but Mr. Mundil said he would arrange an appointment with Nima Douleh. She has been with the company for several years. Mr. Mundil has worked with her for two or three years. He hoped to schedule the appointment for the following week but wanted to ensure it was Nima who would attend from Medtronic. Additionally, he ordered full spine x-rays to check for any damage to the leads. I asked about physiotherapy. However, he prefers to wait until the device situation is clearer. He wants the pain relief improved before introducing another element.
15/07/2025 – Spine x-rays and review with Mr Mundil & Medtronic
Before going to my outpatient appointment I went and had the spine x-rays, and by the time I got down to Neuro, Mr Mundil had reviewed them and concluded there was no apparent damage to the leads. Nima from Medtronic carried out a full test of the device and similarly concluded that it was working as it should. We then had a discussion about the closed-loop functionality. More on that in a mo, but suffice to say she applied a variation of my existing programme, but this time with closed-loop enabled. I would then be reviewed in a couple of weeks to see how I was getting on.
06/08/2025 – Reprogramming clinic
I had a review with Lincy and Nimah, along with a new colleague of hers, who I believe was called James. The new program has been working fairly well, and I’ve noticed that my mornings are better with less neck pain and more ability to do stretches without feeling overwhelmed. However, it still doesn’t feel quite right over the course of a full day. Nima introduced another variation of the program, which I’ll discuss further when I talk more about the closed-loop. Lincy spoke with Mr. Mundil about physiotherapy, and he’s happy for me to begin, as long as it starts gently.
12/09/2025 – First physio appointment booked
After some back-and-forth, with both Harriet and myself occasionally unavailable, and me seemingly dropping off the rehab team’s radar for a while, I finally have my first physio session scheduled for September 17th. Hopefully, I’ll remember to write a post about it! Unfortunately, Harriet is set to move on in a few weeks, but at least we can get started, and then someone else can take over.
A possible break-through with closed-loop
When Mr. Mundil introduced me to Nima, she first confirmed that I had the Medtronic Inceptiv SCS. Once confirmed, she asked why I wasn’t using the closed-loop functionality. Mr. Mundil explained that Sam had tried this when the device was first activated but couldn’t get enough signal strength through the paddle. Nima inquired how soon after surgery this attempt was made. Upon learning it was just a couple of weeks post-op, she said she typically waits at least four weeks before trying closed-loop. Sam believed the issue was due to old scar tissue blocking the signals returning through the bottom of the paddle electrode. Mr. Mundil was cautious not to risk spinal cord damage and decided to hold off. However, Nima felt the early timing after surgery might be impairing the paddle’s function, especially considering the recent procedure’s impact. She recommended running tests again to determine if closed-loop functionality could be viable now.
Having checked the current settings, she took a copy of the program and then amended the copy to apply closed-loop. She then asked me to move in such a way that I would expect to either feel increased pain, or that causes me to get over-stimulation. Sure enough she could see on the graph of input signals spike, and then the closed-loop adjust the stimulation. After a few different tests, Nima set the tolerances within which closed-loop worked. I then had a couple of weeks to see how that went.
Mornings were much better in terms of not having the neck pain. Doing my morning neck and upper back exercises reduced over-stimulation. However, I wasn’t as comfortable during the day. On the next appointment Nima therefore made another version of the program with a different tolerance range. I therefore have what is effectively (but not exclusively) one program for night and one for day. I also have the old non-closed-loop program that I can revert to if I really find the closed-loop a problem. So far I’ve not gone back to that.
One minor drawback of the closed-loop system is its higher battery consumption. Previously, with the old program, I only needed to charge every other day. Even then, my battery would usually drop to around 40% – well above the recommended minimum of 20% – and I could sometimes stretch it nearly three days without charging. This was a lifesaver, especially when I accidentally forgot my charger during weekend trips. With the closed-loop system, however, I need to charge daily. On rare occasions when I’ve forgotten to charge at night, I’ve reached the 20% limit by morning, making about 36 hours the absolute maximum battery life. Forgetting the charger is no longer an option, even for a quick overnight trip! I also have to remember to carry the remote more consistently, since it’s necessary to change the program. Honestly, I’m supposed to carry it anyway, so this added necessity is actually helpful – it serves as a reminder to bring the charger along as well.
So far so good
Since activating the closed-loop system, I’ve noticed much more consistent pain relief. The recent increase in pain reminded me to pace myself, especially with activities like DIY. Before, I would push through the pain just to finish painting a wall. Now, I prioritise managing the pain over completing every task. Feeling capable of doing more – whether it’s DIY projects, walking the dog, or working at my desk 2-3 days a week – shows me that the device is effective and truly improving my overall well-being.
What next?
If we can calm the neuropathy in my right foot, either by finding the right topical treatment or possibly by extending the device program – something Nima believes could work – I’ll be in good shape. And who knows, the physio might even improve my balance! I’m trying not to get my hopes up too high, though. 😉
Now that I’ve caught you up, I hope blogging won’t feel like such a chore anymore. I was so aware of the backlog I needed to catch up on that I kept putting off writing new posts. Hopefully, I can get this blog back on track. By the way, speaking of the blog, did anyone notice when I switched platforms a couple of months ago? Let me know if you think it’s better, worse, or just different.