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from an unpleasant popping and fizzing to an intense burning that can and has lasted for days at a time, they have been replaced by the rhythmic tingle from the stimulator.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

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.

DFA. 

The Shape Of Water - A Schwannoma Diary (#11).

I saw my neurosurgeon last Friday for my 6 week post operative review. It's kinda hard to believe that six weeks have past since my surgery. Time moves in such elastic ways. 

We reviewed my progress. It's been patchy. I'm not moving freely. Even with the physiotherapy exercises I've been doing, it's hard to loosen up. Walking is a chore for the most part and I can't tolerate walking long distances, say more than a kilometer. It's hard to get in and out of my car, my bed or chair. I experience pain at the surgical site and down into my legs, along with long bouts of pins and needles. Incontinence is still an issue but, so far I've avoided any significant accidents. This requires a regular toileting regime, forward planning - especially on outings - and a keen focus on what my body is telling me. I do get strange sensations, which I've attributed to warnings that I need to take heed of.

With the activity I've been maintaining however, I do believe things are improving. At the very least, I'm coping with them. My neurosurgeon prescribed some new medication that will hopefully, address the pain issues and the nerve irritation that is causing the pins and needles.

The one question I had for her during my review last Friday though was pretty much the only thing I wanted to get an answer for.

Can I get back in the pool?

When I had my original surgery back in 1989, my then surgeon was happy to allow me to get in the swimming pool after a similar time frame. As a result of this, not only did I discover a love for swimming, I became really good at it. So I knew going into this surgery that the pool was going to be my Holy Grail. 

My neurosurgeon this time around prohibited me from going swimming until she had reviewed me. Her primary concern was my wound. She wanted to ensure it had healed properly before exposing it to water and risking infection. I accepted this, but I was disappointed that I couldn't start as soon as possible. 

You can imagine how pleased I was when I put the question to her on Friday and received her answer. 

"Absolutely!" 

I felt like I was receiving a Christmas present - all over again.

The Unley Swimming Pool at Forestville here in Adelaide is a pool I've been swimming at on and off for twenty years. It's an Olympic sized pool and it's a friendly place. After dropping the kids off at school, I headed straight there. After 9AM, the early morning lap enthusiasts and competition swimmers tend to taper off so competition for lanes is minimal. I went for the recreation lane today. 

I had an idea of what I was going to do once in the water but for this first session, I winged it a little. I adapted some of my 'on land' exercises to the water and set about constructing a regimen that ended up looking like this; 

Stationary calf stretches 10 reps x 10 seconds right leg.
Stationary calf stretches 10 reps x 10 seconds left leg.
Stationary side stretches 10 reps x 10 seconds right arm (down right leg).
Stationary side stretches 10 reps x 10 seconds left arm (down left leg).
Stationary leg kicking (against side of pool) 2x 1 minute.
Walking (strides) 25m x 10.
Jogging steps 25m x 10.
Side strides 25m x 10.
Breast stroke (gentle!) 100 meters. 
Cool down walk 25m x2. 

I won't go into deep explanations of each of these, but feel free to ask me about them in the comments and I'll try to explain them if you're interested. 

The session took me about 45 minutes. 

Suffice to say, from the moment I entered the water, I felt amazing! Water and buoyancy affords the body so much freedom of movement and I was able to stretch so much more easily than I can on land. The exercises I chose were designed to achieve both a muscle stretch and a nerve stretch through my lower back and legs and I chose to limit them once I could feel them in my calves in particular. I felt that was good indicator. Curiously, I felt the stationary leg kicks and the breast stroke in my right buttock, close to the mid-line. On land, most of the pain I've been feeling has been centered around my left buttock and sciatic nerve. I'm not sure what the significance of that is but I'll bring that up with my physiotherapist when I see him tomorrow.

Leaving the water after that first session, I felt a little shaky - but it was a good shaky. I felt like I had achieved something important and I felt a rush of endorphins - ones that have been in short supply lately. I'm well keen to do it again. But I know I need to pace myself. 

This is a big milestone for me. Since the surgery, I've been looking towards this moment. I've been thinking about it. Planning (loosely) what I would do once I got in there. I knew it would be good...and it was. 

I love the shape of water. 

DFA.