Something’s been bugging me about that recent visit with the neurology team at Toronto Western. Bugging me enough that I have spent some time reflecting on exactly what it was. I realize now my dis-ease has nothing to do with the conversation/meeting itself, but rather the very nature of the referral and its implications. When [...]
Archive | medical RSS feed for this section
Underwhelmed for once
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 [...]
Keep Calm and Carry On
As Owen gets bigger and more wiggly I can sense the forthcoming horrific decisions that are coming my way. He is not that heavy yet (48 lbs) nor is he that tall (drat, I forget… he’s short) but consider his size when he’s doing his best imitation of a greased seal and you’ll perhaps appreciate [...]
Do Not Resuscitate
I had one signed this week. (The form is signed by a physician, not the parent.) After months of sitting on the document, I decided to finally just do it. It wasn’t actually a fraught decision; I have always known my own limits for what interventions for Owen are acceptable and what are not. The [...]
They’re almost always wrong
(Wild Water Kingdom. Last few days of summer holiday.) I was told a few weeks ago that Owen’s hip was completely dislocated, as evidenced by an x-ray. (He’s been getting x-rays every 9-12 months for the past few years, to keep an eye on his pelvis and legs.) One leg has become progressively shorter than [...]
Oh that? It was nothing after all.
(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 [...]
MRI Brain Without Contrast
FINDINGS: Previous MRI study dated 3rd March, 2000 was reviewed. Generalized cerebral atrophy is noted, with prominence of CSF spaces. Significant volume loss of the basal ganglia is noted, predominantly of the globus pallidus. There is also some volume loss of the thalami. Compared to the previous MRI, the volume loss in the basal ganglia [...]
life after pump
(Photo: Owen and Sallyanne) Another general update. Owen’s intrathecal baclofen pump was removed early February. The surgery itself was a great success – only 4 days in the hospital. He’d had a muscle biopsy as well (where a 2x2cm square of muscle was removed from his quadricep muscle – ouch). I think that probably hurt [...]
email letter to my family
hi everyone, not all of you know owen had surgery yesterday for removal of the intrathecal baclofen pump; in case news traveled (and also of course to update you), the surgery went well and owen is doing fine. it was good timing to remove it – there was a large amount of spinal fluid accumulating [...]
6 months later: a ‘technical’ update
(photo: ‘frontal bossing’ on full display) I haven’t blogged in many months and yet traffic to the site remains steady. Thank you for your continued interest :) I promise to add another post next week about how things are *really* going. Until then, here’s a status update: The medication in Owen’s intrathecal baclofen pump has [...]
Flickr
Recent Comments
6th Jul 10
The word 'random' strikes me. As actual for the reality.
5th Jul 10
That's an enlightening and sobering post. I keep thinking about whether we would have done the surgeries Ben had in ...
4th Jul 10
Thanks for your comments Pamela and Claire... I frequently hear stories of patients (and parents) dissatisfied with their encounters with specialists ...
3rd Jul 10
Wow, what a difficult post. I've read it over a few times and I get it. We are, ...
3rd Jul 10
Wow. As someone also navigating the Ontario medical system (with a younger child), I really appreciate the insight of ...
4th Jun 10
awesome photos. Very excited you got away to NYC. I would have a very hard time consenting to treatment that I ...
3rd Jun 10
Hey Louise, I would certainly guess it's been done more in the US - but everything at this point is anecdotal. ...
3rd Jun 10
That's very disappointing -- especially because of the incredibly vague responses re risks and benefits. It's easy for a surgeon to ...
2nd Jun 10
"I guess that saying is applicable here: when all you have is a hammer, everything looks like a nail. ...
10th May 10
I agree! And appreciate the honesty in both of your blogs.