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A Series of Unexpected Events: My Strange Medical Journey

First it was a sore nipple…

It all started with a sore nipple and a lump that I noticed in May of 2018.  Why do men have nipples anyway?  It is the very definition of ‘useless’, starring in phrases such as ‘like tits on a boar’.  But we guys have them, and sometimes things go haywire as they did with me.  But the nipple wasn’t the real problem… therein lies a tale.

The doctor confirmed the lump, so off I went for a mammogram, then an ultrasound because yes the lump was real and real strange.  I tell you, getting a mammogram as a man is a surreal experience, but the clinical staff were kind and it was relatively quick and easy.  The lump was not cancer or anything of that sort, so that’s good: instead it was diagnosed as gynecomastia; basically, abnormal development of breast tissue in men.  

In search of a cause…

Adult men don’t normally grow breast tissue, so this indicates something isn’t right.  A series of blood tests revealed I had abnormally low testosterone levels.  Testosterone, the very hormone of maleness, and I’m running short.  Geez, can this get any more insulting to my male ego?  Oh, probably.  But on the plus side, low testosterone explains all sorts of symptoms that match my life: gynecomastia, depression, low energy levels, loss of muscle mass, fatigue / extreme fatigue.  Yep, all those boxes are checked.

Low testosterone is another one of those things that doesn’t generally happen all by itself: there is generally (although not always) an underlying cause.  So on to another set of diagnostics… 

And a cause for the cause…

Low testosterone can be caused by a number of things, including several forms of cancer or tumours: testicular cancer, prostate cancer, tumours of the pituitary gland, and a couple of others my doctor rattled off and I’ve since forgotten.  Much of the time low testosterone is ‘idiopathic’; that is, there is no discernible cause.  Treatment is fairly easy: testosterone supplements. But you can’t take those supplements if you have prostate cancer, as they will radically accelerate the tumours.  The tests to eliminate the various cancers were fairly quick: blood tests, for the most part.

To be honest, though, the one cause that concerned me the most was tumours of the pituitary gland- that’s basically the brain.  Although pituitary tumours are generally not cancerous, removing them is brain surgery.  Brain-related issues worry me: that squishy organ defines ‘me’ more than it does for some folks- it is how I make my living, after all. Detecting or ruling out a pituitary tumour requires a CT scan, and the earliest I could be scheduled was about three months in the future at that time.  That meant a CT scan just before Christmas on December 20.  

Congratulations, it’s idiopathic!  Unfortunately…

The day for my CT scan finally arrived.  It was quick and completely painless: an amazing machine and nearly magical technology.  The Christmas season delayed any results, but my Doctor called me in on January 3.  The news he delivered was decidedly mixed.

On the plus side, there are no signs of a pituitary tumour, so no need for brain surgery- at least not for that problem.  That, along with all the other tests, also means my low testosterone is almost certainly idiopathic, so I can begin taking testosterone supplements.  Hurray!  I can now get my magical maleness chemicals upgraded.

Unfortunately, something unexpected was identified on the scans: a number of brain lesions, consistent with having experienced several strokes.  I have never experienced any of the traditional symptoms of stroke- slurred speech, paralysis, etc.  My Dad had one of those kinds of strokes when I was four years old and was left crippled and barely able to function for years: he ended up institutionalized.  My father eventually recovered most of his capacity, but then died at the age of 65 (when I was 15) of a heart attack.  

Image of a brain (not mine) showing lesions Not my brain, but showing lesions that are were caused by silent strokes likely similar to mine

What the CT images show, according to my doctor, was evidence of several silent strokes.  The same thing as my Dad, basically, but less destructive and effecting parts of the brain that don’t cause immediate observable symptoms.  Just as with my father, the damage to my brain is permanent and irreversible: people can now correctly say I have holes in my brain, if not in my head.  But the brain is malleable: my Dad, for example, was able to recover most of his function, presumably via the ability of his brain to re-map functions to undamaged areas.  

I got lucky, I guess, that the damage either missed vital areas or (as I like to think) I have so much brain power that a little loss is not a big deal.  I have no indicator in my past to tell me when I might have experienced one of these stroke incidents- a few strange headaches, a couple of days where my balance was funky, but those were so small that they barely registered as memorable.  But any kind of stroke reduces the brain’s capacity to deal with future damage, and is a sign of underlying issues that could become catastrophic.  

What next?

It started out as a a sore nipple and ended up with a completely unrelated issue: silent strokes and brain lesions.  You can’t make this stuff up, seriously.

There is no fixing what is broken: the damage to my brain is irreversible.  Now it is a matter of identifying if there are underlying emergencies like defective/weak veins or partially restricted blood flow that might cause more damage in the near term.  For that diagnostic, I’ll be going back into the CT scanner this time with a contrasting agent so they can see the blood flow.  And apparently that will mean several months on the waiting list again.

I also asked my Doctor if there were any other preventative steps I should take immediately.  My cholesterol is mildly elevated, so he started me on statins.  I’ll also be taking some steps to lower my weight a bit, and I’ll be taking care to reduce stress in my life.  Doing these things can help, but none will ‘solve’ anything if the cause is structural.  There could be more blood vessels waiting to plug up or burst, and I might not even notice.

I’m trying to make light of it, but I’ll admit it is rather scary: getting to this point in the diagnosis has been a bit stressful, too.  Other folks face far worse, so I should count myself as extremely lucky- but tell my brain that… no, scratch that: my brain is full of holes.  Writing this has helped, but it also makes it a bit more ‘real’: I don’t want folks who know me to worry, but this whole process has been on my mind for months.  My apologies in advance if this is more depressing than funny.

The attached cartoon ’speaks’ to me, and is also rather funny:  

severe_stress_die

2 comments to A Series of Unexpected Events: My Strange Medical Journey

  • Colin

    Humour is sometimes the best medicine Kelly. I am sorry this has happened to you however very happy that you are getting the medical help to hopefully prevent any serious issues in the future. The ability to diagnose and treat this has come light years from when our Dad succumbed to his stroke. I am here for you Brother, what ever you need. Love you.

  • Thanks, Colin. I’m lucky to have been born when I was, and lucky that the damage has been basically ‘invisible’ thus far.

    I’ve struggled a fair amount, though, rationalizing how I feel about each part of the diagnosis. I know, intellectually, that things could be much worse, and I dodged several bullets along the way. I didn’t say much of anything about it to anyone other than Irene for most of the year because it was just a sequence of tests with no conclusions.

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