We had our appointment yesterday to discuss deep brain stimulation with the neurologists at Toronto Western Hospital. DBS is the latest thing in the world of neurosurgery – an implant that can control impulses from certain areas of the brain. Successfully used to treat depression, dystonia and Parkinson’s in adults, it is now finding its way into severely disabled children with dystonia.
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.
“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.”
I sooo get that…I sooo get your answer. I’m sorry things weren’t more definitive. Damn.
That’s very disappointing — especially because of the incredibly vague responses re risks and benefits.
It’s easy for a surgeon to say: “I can’t see a reason not to try.”
It seems you’ve listed lots of reasons in all the “maybes” about any potential benefits and possible harms and the fact that they won’t remove it if it doesn’t work.
Has the surgery been used more often in children in the US?
I heard about your trip to New York and loved seeing the pics of Angus.
Hey Louise,
I would certainly guess it’s been done more in the US – but everything at this point is anecdotal. No studies on children yet. Seems to have more predictable results when the primary diagnosis is dystonia. In Owen’s case, it’s more of a secondary symptom, caused by who-knows-what. He also has malformation/scarring on part of his brain, making the outcome even less certain. Neurologist said it works better for software problems, not hardware :) And Owen’s issues are both.
NYC was great! Didn’t even consider bringing Owen – good break for me and besides, would have been impossible to get around.
awesome photos. Very excited you got away to NYC.
I would have a very hard time consenting to treatment that I was not certain would help Julia.
I’m sorry the appointment went the way it did. Surgeons saying ‘why not’ when its not their kid irritate me.
I’ve seen Owen out for walks with caregivers the last couple of weeks, always on the other side of a busy street so I haven’t been able to say hello :(