Category Archives: Post op

Clear as a bell!

Scan also takes years off your face, wrinkles fade like magic!

That’s what my 12 month post-CCSVI scans said about of my neck veins last week. Stent like new! No narrowing! No clots! No blockages at all, in fact. Thank you to  Barrie Vascular Imaging and Dr. Sandy MacDonald for courageously making the scans possible even in the current fear-based political climate.

While Dr. MacDonald presses ahead with what he was trained to do, in contrast, the Canadian medical establishment and the lamentably spineless federal Minister of Health dither, and people suffer.

Still, great news from Manitoba today! Oh, and how do I feel? Fantastic, since you ask! Taking on new projects, and enjoying every day.

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Harper sockpuppet (aka the Minister for Health) kicks us when we’re down

Stephen Harper's Minister for Health. Or, anyone in his cabinet, really.

Stephen Harper doesn’t believe in socialized medicine and he damn sure doesn’t want it scaled up to address the needs of 75,000 Canadians suffering with MS, even if doing so would save the government millions very quickly.

After all, if that same socialized medicine is seeing to it that the provinces are spending 20,000 – 50,000 per patient per year to pay for MS drugs of very limited effect, well- that’s exactly the kind of transfer from the public purse to wealthy transnational corporations ( Big Pharma, to you and me) that puts Stephen to bed a happy boy every night.

That’s what we can take from yesterday’s announcement that the Canadian government will do exactly fuck-all for MS patients in Canada, other than pay a team of advisors to “monitor the situation” around CCSVI research.

I did a fair bit of media work yesterday, reacting to the news, and the key point I tried to make with it all is that yesterday’s news is a big win for the pharmaceutical companies, who already are doing a brisk 13 billion dollar a year business selling immunomodulators to people in the first stages of the disease. They can expect to ride an incredibly lucrative growth industry for years to come if they can only keep competing therapies out of reach. And given that their corporate-friendly associates in Ottawa are calling the shots, I predict we will be among the very last countries in the world to allow MS patients to have their veins unblocked.

The minister says her decision was taken under the advice of the head of the Canadian Institute of Health Research, which, under the direction of its current head, might better be called the Institute for the Ongoing Promotion of Pharmaceutical Research. Check his astonishingly close ties with Big Pharma on this handy CCSVI locator page — might require a login first but well worth your 30 secs to sign up; this is THE cutting edge site for breaking news on CCSVI.

First to reach me for reaction was Sandra Abma from CBC Ottawa, who brought radio producer Kate Porter along for a joint interview that we did in the Herb and Spice shop across the street from my workplace. A segment It got included in their evening newcast – audio of the piece is here.

Carol Anne Meehan of CTV Ottawa interviewed me for their six o’clock news; as of today only ( Sept. 2) the video is here, sixth headline below the video player. ( “Ottawa Man Reacts”). Audio can be heard here if you miss the video sell-by date.

We also made the front page of the Ottawa Sun this morning with this story by Justin Sadler, who has done solid work on the CCSVI file from the outset.

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Filed under Media Coverage, Post op, Research

“The hearing of a small boy”

That’s what the ear specialist told me I have this morning, which isn’t bad at all after 12 years of MS scarring the old brain pan and buggering about with my nervous system.

So that was good news. The other good piece of news is that I have started to jog again after a 6-year hiatus when I was too scared to, what with dropfoot making me a big tripsy-toesy when I walked.

At walking speed I could recover from a trip before it became a fall, usually, but at jogging speed I couldn’t trust my toes not to catch, and send me for a spill.

But about six weeks ago I became aware that I just don’t trip up anymore, and a week and a half-ago the penny dropped and I realized that  “hey, I bet I could jog again!”

Coincidentally a few days later The Citizen called just to check in — the Brad Wall/ Saskatchewan story may have renewed their interest in the CCSVI file–and in going over the “how am I doing now” notes  told them I had started up the roadwork again, and later that day an editor emailed to say they wanted to send out a photographer.

Here’s the link to the story.

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Still feeling great

“OK, but how do you feel now?  OK, yeah, I read that other post, but how do you feel now? OK good, but what about right now?

People keep asking,  and I keep saying – I had blocked circulation in the veins coming down from my brain. I had them unblocked. Not surprisingly, I feel the benefit of vastly improved circulation.

I really don’t know what else to say on the subject.  I feel great. Yes, it cost me $10,000. I believe it was the best $10,000 I ever spent on anything in my life.

And I also believe it is a crime that ten of thousands suffering people in Canada are denied the opportunity to have their circulation issues looked at by our medical system, simply because they have been red-flagged as as having a pre-existing condition that one particular branch of the medical profession feels they have “ownership” over.

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So how am I doing?

Wardrobe by Courage My Man, Kensington Market, Toronto - stent not included.

Am I as top o’ the morning as this vintage ray of sunshine appears to be? Well, just about!

I still know I have MS, or had MS damaging my nervous system for 12 years, whichever you prefer. One side is still noticeably number than the other, and I have a ringing in my ears that comes and goes, as I have had for years. Fingers on the right hand are a little stiffer than the left hand, though better than before the operation.

But on the plus side:

  • Whole days go by now without tripping over my toes
  • Feet warm and more flexible
  • Energy, energy, energy! I get by with 5 -6 hours of sleep a night, and rarely take naps.
  • Cognition – it never hurts to think anymore, and so my writing is not the chore it was becoming in the last half-year before Poland.

Residual sensation of the procedure? Well, for the first month I could usually feel where the stent was in my neck. Not pain, but some discomfort. That’s mostly gone now, just the odd twinge that is not pain, just “presence”. But even that seems to be fading by the week.

I am still on my Plavix blood thinner pills, which I will keep up for a year after the op, and the stomach coating pills that accompany it. I take low-dose buffered aspirin, 1 per day, and will for the rest of my life.

So what to take for my experience? Just this – I  personally would do it again. So if you are reading this to try and figure out what to do for yourself or what to recommend to a loved one, please take it as my story — just one story out of hundreds.

To make your mind up you need to click around the internet and do some research. Hit Facebook and search groups with CCSVI in the name; there are dozens now and each seems to have its own group of people returning or about to set off. Click the links on the right side of this blog, and then click the links those links take you to. Read widely, consider your options, and decide for yourself.  I believe we will have the Liberation procedure in Canada within 3 years, but meanwhile there is Poland, Bulgaria, India, and who knows what tomorrow, all with different costs and pro/cons. Join the community of interest around CCSVI; you don’t have to be alone as you work out what is best for you.

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Educational activities

I have a question!

Like hundreds of thousands, maybe millions, tonight I saw the W5 documentary “The Liberation Wars”

It certainly got me thinking about which MS treatments are allowed in Canada, and which are not.

I got to thinking about some of the dollars involved in the treatments.

I shot Teva products into my arm every day for ten years, so I know a a bit about the kind of money that company pulls down. Their Copaxone injections cost my workplace drug plan $18,000 a year, which goes a long way to explain how the makers of the world’s top-selling MS drug did gross sales of $11 billion in 2008.And then there is Biogen Idec,  the makers of Tysabri, the MS treatment that costs 17,000 US a month, I’ve been told. Fine firms both, I am sure, that have  poured millions into research along the way. We likely know a lot more about immune reactions thanks to their studies.

But still,  I wonder about medical consultants or advisors to firms of such unimaginable wealth. Such advisors could do so out of the kindness of their hearts. Or they could be paid handsomely for their association with such corporations. I might have my own thoughts and so might you, but the next time the news media interviews such an individual in relation to the whole debate about which MS treatments Canadians are allowed to receive, they might do  a huge service to the discourse by simply asking: “how much money have you personally received from companies that manufacture and market drugs used to treat MS” — with the camera rolling.

Don’t you think?

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Update: recently stented man talks about himself for hours; weary crowd calls out for more wheelchairs

As I blogged about on Thursday, yesterday I spoke to a public meeting organized by MS Liberation, an Ottawa-based adocacy and action group fighting for treatment options for Ontario MS patients. I told of my experience in Poland getting a simple 25 minute procedure –routine angioplasty really –to unblock the veins in my neck and allow for proper circulation of blood through my MS-damaged brain. The simplicity of the procedure combined with its extremely short recovery time – one night in a hospital, and off you go to live your life – seemed to be the aspect of my experience that really struck a chord with the audience, most of whom were MS sufferers or family members of an MS sufferer.

Sandra Abma from CBC News was there and caught the mood of the room very well I thought. Click the image above; the story begins at 23.50 — you’ll need to click and drag the scroller until you get there.

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Filed under Media, Post op