What Just Happened?

The story of a surprise brain tumor diagnosis

Symptoms and Diagnosis

Three years ago I was giving a slide presentation which included some pictures from my time volunteering in Africa. There were pictures of some of the disadvantaged and malnourished HIV orphan kids I worked with in the highlands of Ethiopia and Cameroon. I suddenly felt uncontrollably emotional. Bit odd I thought, must be getting older, or maybe the effect of now being a real family man with kids? I skipped the next section of those slides, took and breath and continued on with the show.

One year ago I went to unclip my foot from the pedals of my mountain bike on a difficult section of the sidle track along the Port Hills. I couldn’t get the little ankle action quite right on the left foot and promptly toppled over. My good friend Nic and I diagnosed rusty pedal cleats and I carried on with the ride with a bit of a bruise on my hip.

Six months ago I had just had a long soak in the spa pool at our local leisure centre. The place was closing for the evening and I was just gabbing my towel and clothes. My left shoe wouldn’t quite go on. It was like my foot wouldn’t quite go at the right upwards angle to slip on like my right foot. In fact the whole leg control seemed a bit off. “Really overcooked myself that time I thought” and cycled back home again.

Four months ago I realised I clearly had some sort of RSI or OOS issue. I had found myself avoiding typing at work, and when I really thought about it I realised that I had stopped using two fingers on my left hand. I’d just changed jobs at the beginning of the year, so that was clearly the cause, and set about spending a bit of time swapping chairs and changing the height of the desk. Bit of a pain not being up to my usual typing speed and efficiency but it would pass I was sure.

Two months ago I was skiing with friends for the school holidays with our two oldest kids, Zara and Cairo. It had been great but turning to the right (weighting the left ski) wasn’t really going well. Fine on piste at high speed, but low speed with the kids, or if off trail I would always be catching the left tip of the skis. I couldn’t even ski backwards anymore to gab some photos of the kids. An evening meal together after the children were fed and watered reminded me of my left hand symptoms as it was the first time during this whole past year I had sat down at a table to eat with a knife and fork in each hand. The symptom was nothing too much of note, I just couldn’t get my left hand to turn the spaghetti onto the fork quite right. Very odd I thought?

So I finally found myself at the GP. What got me along was that I had what I termed “nappy knee” that shot me a painful jolt on the left when I kneeled down each morning to change the pooey nappies. That was my opening line with the doctor, and he examined my leg and said I had very weak knee cap muscles and it was all very loose. Usually something he might pick up in a young female and I would need some physio perhaps to get everything back in order.

Bit odd I thought, lets try him on my other odd issues. I relayed what I could of the year to date, all a bit vague and unrelated,  a few other things I had noticed, like getting a dead leg while sitting down, more than once now, sort of once a week not being able to move my leg every well. Always went away, not sure if it related to the arm, maybe not… but maybe.

He did some more examination and then asked me to move my left foot up. It wouldn’t move up, in fact there were quite a few movements I couldn’t do, like walking on the balls of my left foot. Funny the things you don’t know you can’t do until someone specifically asks you to. The GP had no answers as to the cause and said next step was a private neurologist appointment, as the wait time in public would be many months. It was only a few hundred dollars and I said I was just starting to get worried so lets just do it.

Back at home I relayed my GP visit to my wife Elodie. She glanced up, looked at my calf muscles and said “You’ve got clear muscle wasting on the left”. Ok, finally a visible physical manifestation that something was not right. Not really wrong in my mind, but certainly not 100% right. The stress was starting to build. I burst into tears one evening recounting how difficult it was trying to tie Zara’s hair back. My left hand just wasn’t strong enough anymore and the emotionality thing was out of hand.

Six weeks ago was the visit to the neurologist, John Fink. It was a pretty emotional time for me before and after but pretty factual during. He said the symptoms were “subtle” and “he’d keep an open mind on the muscle wasting”. The step forward for me was that my "something" was real, and according to John it was the central nervous system. Out the window were the pinched nerves, or the idea I could just push through it with a bit of exercise. It was inside me somewhere, either something in or on the spine, or some degenerative disease such as multiple sclerosis or motor neuron disease.

But at least it wasn’t a brain tumor.

“Well, it’ll be six to nine months wait on the public system for an MRI, and that's the next step. Got health insurance?” said John. “No, I don’t have health insurance” I replied “but oh well, I’m not waiting, that would be inhumane. It’s only money, just draw down on the mortgage a bit”. Elodie rang the private MRI place, $4,200 was quoted for brain and spine as requested. I thought “heck, that's a lot of money, they’d better find something for that kind of cash, lucky we are very well off, I wonder what people on standard or low incomes do”.

The days ticked by till the Wednesday evening appointment. Now that I allowed the symptoms to be real in my mind and body I felt the motor control attacks, I felt the weakness down the left side. The left hand wasn’t RSI, it was loss of fine motor control. I could fake everything but when I tested my left I always failed. I couldn’t even go up onto my toes anymore. My left leg was cramping in the night. The rest of life kept on going as per usual, kids to school, nanny with the young one, Elodie off to work at Hillmorton, work continuing at Christchurch City Council.

Finally the MRI. Just like in the movies, a massive white machine. It was a big MRI to be undertaken with both brain and spine to complete. Very claustrophobic, with a sort of cage placed over my head. After about fifteen minutes they pulled me out, said that the doctor had looked at the scan and they were going to put a line in my arm with some sort of dye to highlight stuff in my brain. Ah, I thought, they've found nothing big, so they must now be looking for something small. I wonder what multiple sclerosis is anyway?  Back into the machine, the hour passes, I walk out with a smile to the receptionist, I’m sure the bill will find it’s way to me in due course (it did and was 'only' $1,400).

My referral for the MRI had got lost, along with the referral for my early RSI. Everything seemed to need a little follow up to run smoothly and so I took Elodie’s advice and fired off a short email to John Fink the neurologist when I got home that evening. The idea of waiting yet another two weeks to my next appointment was John seemed like an age.

“Hi John
Just thought I would drop you a note to say that I completed the MRI today, my symptoms are progressing with clear weakness in the left leg, now with muscle cramps evening and night, I have regular attacks once a week including the left arm. I have an appointment on the 29th August with you at public, but I just wondered whether because of the progression of symptoms, earlier review for earlier treatment would be advised?
Thanks
Richard”

The reply was next morning at work on my cell phone taken in a little break out room. John said I had a ‘meningioma’ which sounded like a strange word to have inside my skull. Fully treatable but I would need an operation. He said to leave work and walk across to the hospital emergency department, they'd eb expecting me.

My mind went into overdrive, so many questions I just couldn’t sort out. I was due in a meeting right now, so I went anyway. It was a good meeting and at the end I could only say  “see you later, been told to go to the hospital for a brain tumor”. It reminded me of the time I had called my work friend Todd to say “Would you mind running the meeting at nine… cool, thanks… got to go, my house is on fire”.

Three weeks ago today then I had nothing left to hold together at the hospital, so I sat and paced around in the ED waiting room, waiting for Elodie to arrive and my name to make it up the waiting list, just gently crying every now and then. I felt no need of extra information, I had a fully treatable 50mm brain tumor. It was good news, I didn't have multiple sclerosis, I didn't have anything on my spine. They were gong to drill a hole in my skull and muck around with my brain. Whichever way I tried out that last concept in my mind though didn’t sound like very good news. Waves of shock and emotion rolled over me.

To be continued...