Billy Idol In A Tube - A Schwannoma Diary (#2).

If you've never had Magnetic Resonance Imaging (MRI) performed before, it's a difficult experience to distill into a basic description. Having thought about this over the past few days, I think the best way to sum it up is in two words - a peaceful panic. 

I consider myself a veteran of the MRI machine, having undergone more of them than I care to count over the past twenty or so years. So, I no longer experience the crippling claustrophobia I felt when I first entered one of these machines back in the 90's. That's not to say the feeling is totally absent. I mean, I still lose my shit if I get tangled up in a sleeping bag, so I retain a certain, unhealthy fear of tight spaces. The MRI and I have, somehow, come to a mutual understanding. We don't fuck with each other.

Entering the two foot wide tube on Sunday was kind of a mundane exercise - if you could call it that. I went into this scan with a clear sense of the objective. We were to map the tumor sitting in my spinal cord in preparation for surgical intervention. Knowing this, and having the clinical knowledge that comes from over 20 years as an Intensive Care Nurse, I didn't feel a great deal of anxiety. 

Once my entire body was delivered into the entirety of the machine - then, it was a case of, "Oh Shit! I'm in this confined space for at least half an hour and I have to lay completely still."

 Of course, they do give you a panic button and headphones - mainly to block out the frightening sound of the magnets circling at insane speeds around your body - but also to pipe music or radio talk back of your choice into your ears as a measure of comfort. I chose the broadcast of the Test Cricket between Australian and India at the Adelaide Oval but the radiographer had a difficult time actually finding the station. For several minutes, I had FM radio blaring Billy Idol's "Hot In The City" in my ears. As I was feeling an uncomfortable warmth in my pelvis (real or imagined), I thought the song was appropriate.

Somehow, the radiographer fiddled with the dial and, like that first bit of radio static you hear on Pink Floyd's "Wish You Were Here", the Cricket broadcast was eventually found. 

Recently, I have been using a meditation app called "Calm". Like the many guided meditation apps that are available at the moment, this app focuses on the breathing as your centering strategy, while voice guidance - provided by the wonderful Tamara Levitt - lulls you into a state of relaxation and...well...Calm! throughout each, roughly 15 minute session.

This method of breathing and focus came in handy while I was in the machine. I found I was able to push away the chaos of the magnets spinning around my body, assaulting my tissues with their insane fields of energy, and find a state of being that helped. The claustrophobia - the panic of feeling claustrophobia - peeled away from me and, funnily enough, even the sound of the magnets became a tool with which to enhance my state of calm. Of course, the cricket helped as well. 

Not Billy Idol though. He's a tool. 

The set of pre and post contrast images, focusing on the lesion in my spinal cord, were good images. At first there was a little confusion because the tumor didn't take up the contrast as readily as was expected (tumors are inherently vascular). It has become cystic, space occupying, which accounts for the leg weakness and pain, the urogenital dysfunction and my lazy bowel, so it has to be dealt with sooner rather than later. 

I meet with my Neurosurgeon tomorrow to discuss the results and go to the next stage.

(image credit - Getty images.)

Emotionally, I'm ragged. I'm at war with my thoughts - my anxieties. Knowing I have this parasitic "thing" within me does not encourage good tidings. I can't plan anything - certainly around Christmas or beyond. At a time of year where everything is insane and people have to think 12 steps ahead, I'm forced to live day to day. Plans I've made with the family have to be held in stasis until we know more and I feel a pressure cooker of expectation. Most of this of course, is in my own head. I don't want to let people down - most of all my kids who, at this time of year are filled with Christmas butterflies. And time always moves slowest when you don't know the answers to their questions.

I'm also asking the question, why did this thing come back? That has been playing on my mind more and more and, of course, that can't readily be answered. I know I shouldn't ruminate over that too much because there's no use in it. It came back and that's all there is to it.

I listened to Joe Rogan talking with Jordan Peterson over the weekend and they were talking about the nature of struggle. Peterson was saying that struggle is an inherent part of human nature - of being - and it's how we approach the struggle that determines our character. I'm trying to approach all of this with strength and focus. It's elementary really. This thing has got to come out. I've got to accept the struggle and navigate the path through it. 

I've got too much living to do. 

DFA.  

The Snore Of Destiny - Part Deux.

It's quite a thing to be travelling along, living your life and dealing with the mundane problems of life and then, suddenly, be forced into a sudden left turn that, literally, shakes shit up. 

So, remember that time when I was talking to you about a little problem I had with snoring? You know - when I'd resorted to a handful of "home remedies" in the hope that I could stop this throaty rumble that had people running from me as if I was the xenomorph from the Alien film series?

Well...it turns out that there is a reason for this snore - and it is one that I hadn't anticipated. At all.

I won't go into a long winded recap of the whole snore-fest. You can click through to read my original post and the rather screwy lengths I'd gone to try and stop it. 

After we returned from our family holiday on Kangaroo Island, I'd resolved to give this thing proper medical attention and I went to see my G.P. with the intention of nipping this thing in the bud right away. After examining me and determining that there was no obvious reason for me to suddenly have begun snoring, my GP and I decided to refer me to an ear, nose and throat surgeon. Because I'm *in the business*, as it were, I know a number of fine surgeons in this field. An appointment was duly made.

Upon visiting the ENT surgeon and having the somewhat wierd experience of a camera being threaded down the back of my throat right there in his rooms, a rather alarming discovery was made. It turns out that my right vocal cord is paralysed - specifically, the arytenoid cartilage that anchors the vocal cord to the  result is that during things like speech, breathing or the act of swallowing, the right side of my throat is collapsing inwards whenever the cords come together so that they don't close up properly.

image credit: Mayo Clinic.

In my discussions with both the GP and the ENT surgeon, a couple of things were happening in addition to the snoring that I'd kind of disregarded but were now, with the advent of all this, things that I should have paid more attention to. Over the past few months I'd noticed, on occasion, that whenever I engaged in exercise I would, after a while, find it difficult to breathe and in addition to that, my breathing had become quite noisy. I was producing a stridor. After exercise, I'd noticed that I had the feeling of a lump in my throat without any real explanation. It was uncomfortable but I'd gotten used to it and therefore dismissed it.

And, very occasionally, I'd noticed that I have struggled with swallowing - whereby I have actually choked on small morsels of food that would otherwise be considered innocuous. There have been a few instances of this that have garnered wierd stares and chuckles from my family but they didn't occur so often that we'd conisdered anything untoward about them. All these symptoms have gotten progressively worse in the last month or so and they've been harder to ignore.

So, on the day that I'm sitting in the surgeon's rooms and we're discussing a paralysed vocal cord, two things came up as causators for it - the first being a viral neuritis leading to an inflammation of the nerve that supplies the right side of my vocal cords. The cause for this is generally sheeted home to a viral infection which can be something as general as a flu. 

The other possibility was a lesion or tumour.

Alarm bells sounded in my head on that one as I recalled memories of my experience of the spinal cord tumour that disrupted so much of my adolesence. Whilst I'd been told that the chances of me having another tumour like the one I'd had in my spinal cord was remote, there was always a slight possibility there could be another schwanomma lurking around inside me. 

In light of this, it was decided that I should undergo two tests to bed down what we were dealing with - a sleep study to monitor the severity of my snore and its affect on my sleep and an MRI scan of my neck and chest to rule out the possibililty of a new tumour growing on the cranial nerve.

image credit: Auburn University.

If you've ever had an MRI, you'll know that it is, at best, a disconcerting experience. You are essentially placed inside a tunnel that isn't much wider than the average person from shoulder to shoulder. It is an uncomfortable and claustrophobic environment and moving inside the tunnel is not an option. Furthermore, a series of huge magnets revolve around you that create a noise unlike anything you've ever heard. It's loud and it's a little scary. 

For my scan, I had the additional *delight* of having my head and neck encased in a rather medieval cage, securing me in such a way that even subtle movements of my head were impossible. Scratching my nose was out of the question. For 45 minutes I was inside this machine, completely helpless and at the mercy of noise that would make Darth Vader quiver. 

The sleep study was a world away from that experience and I was able to complete it at home with a minimum of fuss. It's not really worth mentioning to be honest, but here's a nice picture.

The week long wait following the scan passed in a blur and I was pretty withdrawn for much of the time. The thought of possibly having a tumour - another tumour - was breath taking. Recalling those memories as a kid, going through serious surgery was unpleasant to say the least and it was all I could to keep myself from descending into panic.

Fortunately, the MRI was clear of any sign of a tumour. My relief at having dodged that bullet cannot be understated and I almost had an episode of urinary incontinence in the surgeon's rooms. The scan was able to visualize the defect in my vocal cord and noted the swelling caused by the snore and the general irritation of the tissues in my throat. The sleep study cearly showed that the snore accompanying my sleep state was significant though my overall sleep was rated - surprisingly - pretty decently.

So what's the next step?

Well, in a few weeks time, I will be admitted to hospital to have a more thorough study of my throat known as a nasoendoscopy. During that procedure, I'll be anesthetized and the surgeon will examine how the defect with my vocal cord causes my snoring. He also intends to examine my throat further down, to rule out any other causes or problems with my throat that might be contributing to all of this. The bigger part of the surgery, the part that I'm the most nervous about, will involve the surgeon applying a laser to an area of my throat adjacent to the vocal cord. He will, literally, burn it, creating an area of scarring that will, hopefully, prevent the vocal cord from collapsing in, causing the snore and the asymmetrical airflow over my cords that has caused so much trouble for me over the past few months. It will be a little painful and I may have some temporary difficulties with speech and swallowing but the snore will be gone and my wife will want to share the same bed with me again so that's gotta be a good thing right!???

This was a left turn I didn't expect to be taking and I certainly didn't expect that a snore would have a decidedly more complex root cause as mine does.

I get to be a patient. As a clinician - that's going to be a *fun* experience. 

You know what they say about nurses and doctors making the worst patients...

DFA.