Saturday, August 24, 2019

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from an unpleasant popping and fizzing to an intense burning that can and has lasted for days at a time, they have been replaced by the rhythmic tingle from the stimulator.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


Monday, August 19, 2019

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 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...


Wednesday, August 14, 2019

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, 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.


Tuesday, August 6, 2019

The Tunnel - A Schwannoma Diary (#13).

No matter how many times I enter into the painfully narrow tunnel of the MR imaging machine, I never feel as though I'm getting used to it. I approach each machine with a similar veneer of defiance that says, "Righto fucker...You. Me. Let's ride" as if I'm goading this big dumb square donut of technology to do something fatal - like throw one of its magnets through its casing at God knows how many thousands of revolutions per minute and cut me in half. It never happens though. MR technology is so well advanced now. Safety protocols are so stringent with these machines. You'd have better luck getting hit by a car than being killed by an MR imager.

Still, when you're in that tunnel, your head secured inside the cage they close over you to keep you from moving around, with those magnets spinning around you, clanging and banging and rumbling. The psychology warfare you have to play with yourself can be considerable - especially if you're not enamoured by confined spaces and bone crunching noise.

I had the preparatory scans of my spine today. These will help the surgeon get a "lay of the land" so to speak so she can best decide how to approach the evntual surgery to implant my spine cord stimulator. Having discussed the technology with the product specialist, its likely that the leads and paddles will be inserted into the spine at the thoracic level - between T8 and T10. The product specialist - who has a clinical background - believes that will be the best place to achieve the best potential for the neurostimulation therapy.

I also had a couple of X-rays of my hips - just to rule out any defect in either of those joints that might be the source of the hip pain I described in my previous post. It's highly unlikely, but you just never know. I can't actually remember if I'd ever had any films taken of my hips previously. I've had so many.

The MR scans were pretty straight forward to be honest. I was in the tunnel for roughly half an hour, during which the radiographer was kind enough to give me a pair of headphones with talk back radio piped through them. The talk back wasn't entirely useful however as it was drowned out by the magnets around me. But I always consider it a nice thought. 

There was a short break in proceedings as they pulled me out from within in order to inject the radioactive dye - gadolinium - into my system. That's so they can take a series of enhanced images that can pick up any anomalies (god forbid another tumour) that may or may not present. Gadolinium is one of those hilarious radio-isotopes that makes you feel as though you've lost control of your bodily functions, even though you clearly haven't.

It was all over in half an hour and I was back on my feet and out., The Radiology Service has a green ethos these days meaning the images will be sent electronically to my surgeon - she probably already has them. I meet with her in a week, by which time we'll pencil in a date for the surgery.

There was a time when I would have been petrified of the tunnel.'s just mildly angst inducing. 

Me 15...

Machine 0...  


Sunday, August 4, 2019

Something Radical - A Schwannoma Diary (#12).

"I had in mind something a little more radical..." Roy Batty (Rutger Hauer) to Dr. Eldon Tyrell (Joe Turkel), "Blade Runner", 1982.

I had thought that there would be no more of this story to tell...

Never say never - or so the old adage says. 

I'm roughly 8 months out from the surgery I had in December to remove a cystic tumor - a schwannoma from my spinal cord. This was the recurrence of a tumor I had removed as a teen from the S1 nerve nerve root some 30 years ago. No one expected - least of all me - that it would return, but it did, albeit in a degenerate form.

A degenerate little offspring.

My recovery from December until now has been slow but steady but I have struggled with the effects from the damage to my spinal cord. Pain, altered sensation, bladder and bowel dysfunction (which has, thankfully, improved). Pain has been the overriding feature with much of it localizing in my left leg and hip. While constant, it varies in intensity from an ache that prevents free movement to an intense, deep pain that is accompanied by an electrical storm of pins and needles. Sometimes I feel as though my legs are on fire. At its worst, I can't walk. I can barely move. Most days, I can push through and function with the help of medication, but there are days when I am reduced to tears and I have to hide myself away, let the tears flow, and then somehow carry on. 

It's not sustainable. 

I returned to my neurosurgeon last week to discuss the situation and, hopefully find a way forward. I wasn't expecting much - possibly a repeat injection of corticosteroid into my spinal cord at the level of the surgery and damage to the cord. I was introduced to something a little more radical. Neurostimulation or Spinal Cord Stimulation (SCS). 

The theory behind SCS holds that by implanting a series of electrodes into the spinal column, just above the first layer of the protective tissue of the spinal cord itself, and then passing a precise electrical current through those electrodes, it is possible to interrupt the pain signals travelling from a damaged region of the spinal cord to the brain. Interrupting those chronic pain signals leads to less pain (obviously), less dependence on pharmaceutical interventions and an improved quality of life. The therapy has had a profound effect on many thousands of patients, changing lives and freeing them from crippling chronic pain from spinal cord injury.

Spinal Cord Stimulation (SCS) device and electrodes (image credit The Doctor Weighs In).

So, I have to undergo a surgical procedure. Another surgical procedure. 

This will involve my neurosurgeon placing a pair of leads or paddles into my spinal column, positioning the paddles over the dura of my spinal cord, then tunnel those leads down to an area just above my pelvis where she'll implant the device and battery pack. The leads will be connected to the device and she'll close up.

Medtronic Surescan "paddles" come in two different configurations (image credit Medtronic).

Medtronic Intellis Device & Battery Pack (image credit Medtronic).

I'll then work with a product specialist, who will give me a device about the size of a smartphone, and set up a series of programs that will enable me to manage the device day to day in a variety of situations. The end goal, hopefully, will be an end to the chronic neuropathic pain I've been suffering from since early last year. 

Had it been anyone else suggesting this course of action, I would have dismissed them as crack potted. Because my neurosurgeon suggested it - a) I'm surprised and b) I'm now very interested. 

I met with a representative from the medical technology company Medtronic Australia this morning to go over the technology, the benefits and potential risks, to discuss the surgery and post surgery pathway and what to reasonably expect long term. I am a good candidate for SCS because in most other respects, I'm fit and healthy, I'm active - I swam my first, unbroken 1000 metres over the weekend - and the nature of my spinal cord injury has been shown to respond well to SCS in a large population of similar patients. It isn't a sure thing however. I have been warned that it might not work, or work as well as I might hope. I'm keeping my expectations in check.  

So, I'm moving forward with this. It is worth a shot. I want to be free of this pain. I want to eliminate or, at the very least, reduce my reliance on medication to manage my pain and I want to swim. I want to swim a lot. In amongst all of the bad stuff, swimming has been the one refuge from pain, my inability to move and my depression and anxiety. I think I'm actually really good at it. 

I want to write again. A lot.

Tomorrow, I undergo a series of X-rays and MRI scans to map out my spinal column in detail in order to assess and plan for the surgery. I meet with my neurosurgeon again next week to go over the results and then book a time for the surgery. 

I'm sharing this - mainly for myself. It keeps things clear for me which helps when I'm not feeling so good - this tends to be a lot lately. I'd be happy for you to join me on this one. I'll post more as things develop.