I feel like switching the 'anniversary' thingy to a 'birthday.' I know it sounds oddly celebratory, but I also know that you have read stranger things on this website so remain unafraid to explore this latest idea with you.
'Pain is a unique experience' we've all heard it, and by now, most of us believe it. But, after viewing my personal genetic report, I'm now sure that pain is a unique experience. Perhaps it's not even pain for some of us. It's not for me! This genetics investigation exposed the elephant standing by my side the last 15 years – actually, it's been with me all my life but it took an accident to begin its stampede! Official diagnosis – not pain; it's inflammation. And it always has been!
Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:
I often have some very interesting questions about living with chronic pain. Usually, they are questions relating to details that I’ve never thought of discussing, but they are so important. This page [...]
Then things got even more strange. There was heat, radiating heat where the IPG is, in my face and also other strange feelings that not only added to my pain issues but it made me turn my stim off, more than on! Weird.
I'm not exactly enthused about health admin. There's already enough admin and digital filing to do in life. But I've found that my PT health summary is saving me, not only admin time, but alot of stress having to remember details of my experience. I've included a self portrait for my specialist today!
I’ve had loads of information to process after my recent appointment with pain specialist, Dr Nick Christelis. To prevent you all from zoning out (and my backside [...]
I know that living with pain for over eight years reduces confidence and belief. It even (warning, I'm going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)?
So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you're in pain thinking 'if this friend tells me I need to meet someone and sustain a new friendship, I'm going to punch him' - but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago (like eight years ago for me).
I begged Professor Teddy to do anything, even to chop my coccyx off but he (and his backed up opinions) suggested not to go the invasive path just yet (removal of the coccyx had also not been very successful in treating chronic pain), we had an option for an implant, a treatment that was reversible, it made more sense. To 'qualify' for a stim you have to go through a trial first. The trial period was two weeks and in that time I had half of two leads placed inside my body (yes this is a full anesthetic/operation), with the remaining half of the leads hanging outside my body connecting to a temporary unit. It's a risky period, one very highly susceptible to infection but it allowed me to test the device and its impact before we implanted the $60k (or so) unit. Am I grateful I had private insurance? You bet! My WorkCover insurer certainly wasn't going to pay, eventually dismissing the surgeons reports as not having providing enough information.
