I was looking forward to exploring the possibilities and finding out more – and hoping to rule it out, or rule it in.  I came away from the appointment deeply disappointed – not in the doctors, not in the surgery, not in myself.  Just bummed in general.  Despite my resistance to another potentially useless surgically-implanted device, in the brain no less!, I was committed to continuing the dialogue until a decision had to be made.  I was anticipating the moment when all that research would turn into an obvious answer.  No such luck.

Hell's Kitchen Flea Market, NYC - has nothing to do with this post.

Only a handful of children in Canada have had the procedure done, and only a few of them have had the device implanted long enough to report any results – most with no to minimal improvement (of kids similar to Owen). Interestingly, the neurologists cited official-sounding statistics, like “1-2% will experience a stroke during the procedure due to burst blood vessels”.  1-2%?  Based on a sample of less than 10?  I asked for clarification.  The number was extrapolated from the adult population and applied to what they know about children’s brains.  Fair enough.  But to me, that explanation rendered the numbers virtually meaningless.

We discussed the ins and outs, the pros and cons, the ups and downs.  Random quotes:  “Maybe it will help.  Maybe not.” “May provide some pain relief.  Maybe not.”  “May cause tingles or additional posturing.  Maybe not.”  “Probably can’t hurt.  Maybe.”  “If you’ve tried everything else, I can’t see a reason not to try.”  “As far as brain surgery goes, this is pretty low risk.”  “No, we won’t take it out if it doesn’t work.  But it might be worth a try.”  “Why not?”

I guess that saying is applicable here:  when all you have is a hammer, everything looks like a nail.  Might as well give it a whack.

Thanks, but no thanks.

One of my favourite shots of Angus. Owen did not come on this trip.

(This photo has nothing to do with the following post.)

Sorry – I posted the MRI results and left everyone hanging.  Turns out the results don’t really indicate anything in particular.  The generalized atrophy simply means that his brain is smaller than is expected at his current age.  And one part of the brain, the basal ganglia, is markedly proportionally smaller.   This isn’t surprising; the basal ganglia controls, among other things, movement.  And Owen clearly can’t control his movements.  So we would expect to see something different or unusual in that part of the brain.

The other thing I learned is that although suggested in the report otherwise, his brain has not deteriorated in any way. The volume loss indicated is apparently quite negligible and for all intents and purposes, his brain is developing the same way it was when he was a year and a half old.  So his brain condition is said to be (likely) static and non-progressive.

I find this all rather anti-climactic.   I was, for maybe the first time ever, looking forward to results that could offer an explanation as to why Owen has changed so much in the past year.  I haven’t cared about the lack of diagnosis but recently my curiosity had gotten the better of me.  And when I finally agreed to testing, after so long, I thought my holding-out would be rewarded with some answers.

So not only was the result mildly disappointing, I feel like we got the ‘booby prize’ – these MRI findings likely mean he’s a good candidate for deep brain stimulation (DBS), which involves implanting electrodes in parts of the brain to help regulate brain activity.  In Owen’s case, DBS might reduce his dystonia and associated pain and tremors.   I’m a little gun-shy about more implants at the moment, in the brain no less, but as I sit with it I realize that it doesn’t hurt to be informed.  So, off I go – meetings, research, questions, Googling.

Stay tuned.