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from an unpleasant popping and fizzing to an intense burning that can and has lasted for days at a time, they have been replaced by the rhythmic tingle from the stimulator.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. 

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.

We're Through The Looking Glass Now - A Schwannoma Diary (#7).

It's day 2 post op now. My lines and drains are out and I am existing in a pleasant fog, supplied graciously to me by an assortment of Schedule 8 analgesics and miscellaneous medications. The bulk of the pain I'm experiencing comes courtesy of the 6 inch surgical wound they cut to access my spine as well as a headache that occasionally pounds in the background if I try to do too much. Because the lesion was intradural, I lost the bulk of my cerebro-spinal fluid during the operation. This takes time to replenish - hence the headache.

My legs can move, and I can walk - albeit gingerly - and without much confidence. But I can walk, so that is great relief number one. Since I had my urinary catheter taken out yesterday, I have managed to go to the toilet several times. It takes me a long time to finish but I can empty my bladder. I have control, so that is relief number two. I've yet to test my bowel so I can't report on that one just now. I'm keeping my fingers crossed. The other stuff - the *man* stuff? That will have to wait for the time being. But I would be lying if I said that it wasn't playing on my mind. 

How am I feeling psychologically?

At the moment, I feel drained - completely washed out in fact. I'm struggling to keep my eyes open, even as I write this - and it's mid morning! After, seeing the physio, having a shower, brushing my teeth and submitting to nursing tasks of observations, medications, wound care, I'm pretty much trashed. 

Mostly though, I'm relieved to be on the other side. This "thing" has consumed so much of my mental capacity and well being for so long, there has been no room for just living. I've neglected my kids - all their end of year school achievements and especially their anticipation for Christmas. I didn't go to get the tree like I usually do and a lot of things have happened around me. 

I mean, I've been there - but I haven't been there. 

I've neglected my wife. Emily has been holding fort, running around and trying to keep our household together, whilst tidying up all her loose ends at work, preparing for Christmas and worrying about me. She is a very pragmatic woman, not often given to overt displays of affection. She expresses her love though in her devotion to the household, the family. She often moves in a quiet way and it's easy to miss the things she does. Everything she does is done with love. 

I need to be more aware of that. 

There have been so many wonderful people who have reached out to me these past few days, from all across the world, sending messages of encouragement, love and best wishes. I'm overwhelmed with gratitude for them. 

I hope to be home for Christmas. I have to make it up to my family for all the chaos I have caused them.

I have to stop now. I'm dribbling saliva over my keyboard.

DFA.

The Alabaster Elephant - A Schwannoma Diary (#5).

My wife bought me an elephant yesterday. We stopped by an Oxfam shop in town during a last minute excursion to finish up our Christmas shopping.  

It's a small carved elephant, one with an even smaller elephant inside it's body, which you can see through the intricately carved lattice work on its flanks. It has its trunk turned upwards, a sign for good luck, according to Hindu culture. It's hand carved, courtesy of some sort of co-operative in India that provides these and other trinkets to the Western market, with proceeds from each sale going back to the individual artisans who make them. 

I've long been fascinated by elephants. Their intelligence, their gentleness, their strength. I've even had the privilege of riding an elephant. It was a few years ago now, during  a trip in Thailand. It was one of those experiences that seemed a lot more special than it probably was. I had a moment with this animal. It wrapped its trunk around me and wasn't going to let me go in a hurry. I had thought we'd bonded. It was probably trying to squeeze the shit out of me.

Where am I going with this...

I've packed that elephant into my suitcase for tomorrow. I don't even know if I'm superstitious but, I figure, it's worth a shot...the whole good luck thing and all.

I've packed my pyjamas. A couple of pairs in fact, along with some loose clothing that won't be too hard to get into. I've put in my tablet and my Bluetooth keyboard. I might get some writing done while I'm recovering...I probably won't. I've put in my copy of Dostoevsky's The Brothers Karamazov and Solzhenitsyn's The Gulag Archipelago - another gift from my wife. My sponge bag. Some L'Occitane products. I have standards.

I'm scared. More than I've ever been. This is real. This is real? Surely there's been a mistake. The scans are wrong. They got the wrong patient. The tumour belongs to somebody else.

Fuck!

There's no mistake. 

This is real.

My kids are fighting over some Christmas paper. They're screaming at each other. Meanwhile, the dog is whimpering and whining, wanting to be fed. The TV is too loud. Builders working on the house next door are using an electric saw, a nail gun. My son is trying to follow the cricket, demanding quiet.

Inside my head...silent chaos. A thunder storm of fear that seems more suited to a 15 year old boy than a forty...something...year old man. I'm standing on the edge of a volcano, looking down into the maelstrom. 

I've take the alabaster elephant out my suitcase. I'm holding it in my hand.

The elephant seems calming. They are a calming animal. 

Aren't they?

DFA.