A Flick Of The Switch - A Schwannoma Diary (#16).

I'm home now. 

It's been five days since my surgery and four days since my Medtronic Intellis spinal cord stimulator was switched on for the first time. On Wednesday at midday, my medical technician visited me at my bedside and programmed the stimulator in a process that took roughly fifteen minutes. 

That's all. I know right?? 

And it was cool in that all she used was an iPad with a nifty user interface and a handheld device - similar to the one I now own - to send a series of commands into the stimulator, then tweak them so that I would feel the electrical impulses in the right area - namely my left lower back, left hip and left leg. The sensations were strange to say the least. I equated them to being zapped by an electric fence when I was a kid at my uncle's dairy farm, but much more entertaining. After the initial flurry of shocks and zaps, which took place while the technician was establishing the programming parameters, the impulse settled down, becoming a ever present buzz that rose and fell rhythmically.

I'd had a rough sleep on Tuesday night after the operation. I think that was due to the post anaesthetic fog and the inevitable pain from the surgical incisions. I have a cut in my thoracic spine, which feels like I've been kicked in the back and ribs, while the cut on my buttock makes finding a comfortable position when sitting or laying down difficult. 

The first thing I noticed after the switch on - my hip pain virtually disappeared. Instead of the ache that would usually have me struggling to move, the buzz from the unit had taken its place - and it was pleasant! The pins and needles that I usually experience often come in random bursts throughout my leg, ranging from an unpleasant popping and fizzing to an intense burning that can and has lasted for days at a time, they have been replaced by the rhythmic tingle from the stimulator. So the early signs are really promising.

I came home on Thursday and began to reacquaint myself with a familiar environment.

Working with the handheld device has been an interesting dance. It requires some playing with in order to find the best current for a given positions. I find going from a standing to a sitting position, I have to adjust the intensity of the electrical current, otherwise it can be overpowering. The ideal range when standing seems to be around 2.3 to 2.6 mA (milli-amperes). When sitting, I'm finding that I have to dial it down to between 2.0 and 2.3 mA. And when laying in bed, depending on what side I'm on (I tend to be a side sleeper), I find that sometimes I have to dial it up and sometimes I have to dial it down. Laying flat tends to push the paddles against the spinal cord - as does sitting taller - which they say is a good thing anyway.

The rules, if there are any, seem a little rubbery. For now, it's been good to discover and learn what works and what doesn't. I will meet the technician again in the coming weeks to make some adjustments and add some settings to the handheld for me to play around with.

While I heal, I have to stay out of the swimming pool. I'm not happy about that, given the progress I'd made leading upto the surgery. I was achieving 1km distances in around 24 minutes, which I thought was pretty damned good. The most important part of the healing process is ensuring that the leads and paddles don't move while the fascia and muscle layers knit together. Fortunately, I won't need to wait as long this time around.

All in all, I'm in a good place. I feel positive. 

DFA. 

MacArthur Park - A Schwannoma Diary (#15).

It's a strange experience being a "guest" in the place where you work. Even after a few times, I've never entirely gotten used to it. The faces you see every day...it feels like they see you differently. Maybe they do. Maybe they don't. It's just a feeling.

I was whisked through to radiology as soon as I checked in to undergo the pre-operative mapping X-Rays of my thoracic spine. This is so the surgeon has accurate images of where she needs to enter in order to place the paddles onto my spinal cord. I have a whole bunch of writing and drawing on my back where the radiographer labelled everything. I'd take a selfie, but it's a bit hard and I don't really want to.

I'm waiting now. There's an hour to go before the 2pm list begins. I know I'm third on that list so I'm thinking it'll be around 5pm by the time I go under. I have a nice room with a window that looks over some cloisters. They remind me of the cloisters I wrote about in "The Recipient" so that's nice.

My daughter Lucy made sure she packed her multicoloured Llama into my overnight bag this morning. She said it would bring me good luck. When I dropped the children off at school this morning, her bottom lip bulged and I saw a tear. I thought I saw a tear.

I panicked this morning because I didn't have an anaesthetic song. That's a song that you take in your head to the pre-op area - one that's supposed to keep you calm, maybe inspire you. I recounted in a previous post that I got the idea from Michael J. Fox who took Pearl Jam's "Given To Fly" with him into one of his surgeries. 

I have Jimmy Webb's "MacArthur Park" stuck in my head. I didn't necessarily want it, but it's there and I guess it'll do. There is only one version of MacArthur Park that is satisfactory to me though...

See you on the other side...

DFA.

Electric Dreams - A Schwannoma Diary (#14).

I met with my neurosurgeon again earlier this week to review the series of MR scans and X-Rays that I had taken last week of my brain (I have one), my spinal cord and column and my hips. Given that a major feature of my neuropathic pain has been an intense ache in my left hip, we needed to rule out any form of orthopaedic pathology. Fortunately, both my hip joints are in excellent condition so the source of that pain can definitively be sheeted home to my damaged spinal cord.

So, the only thing left to consider was whether to proceed with the Medtronic Intellis spinal cord neurostimulator platform, which I covered in my last post.

We're going to proceed.

My neurosurgeon is confident this implanted neurostimulator will be the best option for me and that I am a good candidate for it. I'm otherwise healthy, have a reasonable amount of physical fitness, thanks to my swimming and, having reviewed and considered the technology for myself, I am mentally prepared to accept the presence of this implanted device in my body.

The biggest risks of the neurostimulator remain the possbility of the leads and paddles being dislodged or migrating, though my neurosurgeon has assured me that she will make sure they are anchored securely. I'll have to watch how I move in the first couple of weeks after the surgery to allow the healing process to further ensure the leads remain locked in place. There's the potential for infection at the wound sites, which is a consideration for any kind of surgery, so I'm not overly concerned by that. My intuition as a Nurse will ensure that I take care of myself. A lesser risk is that I won't adapt psychologically to the presence of the neurostimulator in my body. It has been reported in other patients who have eventually had their devices removed because they couldn't accept it.

As I write this, I feel dispassionate about it. The chronic neuropathic pain I've been experiencing has been so debilitating for me both physically and mentally that I will try anything if it offers a chance for me to escape it. And, being a massive geek for anything technological helps.

Part of me keeps visualizing this as the outcome of the surgery...

(image credit - issam kh).

...when the reality will be much more like this...

(image credit - Medtronic)

...which is still a radical proposition when I think about it for any length of time...like, right now.

It's all happening next Tuesday, August 20th (it's early Thursday morning as I write this). The theatre has been booked. The implant has been ordered. The requisite medical and nursing staff will have been organized - all of them colleagues of mine, which makes this next step in my little journey a bit different.

The Nurse will become the patient once more...

Stay tuned.

DFA.