This Is MS Multiple Sclerosis Community: Knowledge & Support

Just a question here...

Zamboni's original study stated that 50% of those treated with the angioplasty still had relpases. Also we know that 55% of his patients had thier veins close again within 18 months. My question is were those 55% who had their veins close included in the 50% relapse rate? I'm assuming it was.

My interpretation is that as long as the veins stayed open, there was no further relapses.

That was my assumption as well but alot of people are throwing the 50% number around.

It was 47% who re-stenosed (splitting hairs, but...), and as Mechanicallyinclined wrote, those numbers were where the relapses were.

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My name is not really Johnson. MSed up since 1993

That 47% figure was arrived at after the 18 months. What we don't know is how many more of those in that study relapsed AFTER that 18 months.
So the relapse rate could be higher.

Just like we don't know how many restenosed after 18 months. But relapses and restenoses, IIRC, overlap. If we want to throw science out of the window we could just claim: "Keep the veins open! It brings good luck!"

sou(r)

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Exactly. If you look at the chart published in the Zamboni paper, the curve is basically going down at a fairly constant rate. If you project that failure rate forwards in time, I'm guessing that all balloon procedures would close back up by 3 years post procedure. It doesn't seem to be a permanent solution.

This failure rate was for the internal jugular veins; the balloon procedure for the azygous vein had much, much better long term results. About 90% stayed open at the end of the 18 month reporting period.

I tried to extract the graph from the .pdf but wasn't able to copy it.

I know that if I had been given the choice, I would have opted for stents.
I don't know if my IR is willing to repeat the procedure again and implant stents. Personally, I am willing to take the low risk (1% or 2% ?) of stents versus the 100% certainty that my SP MS will completely disable me some day.

Also, now I am facing paying for the same $$$$ procedure all over again.

Stents are our friends.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Prof Zamboni's pilot study simply says more work is needed to order to say what is the best treatment for CCSVI. Maybe an approach of venoplasty in the first instance, then checks for restenosis, then stents if venoplasty does not work long term or the veins are not suitable. It is clear to me that the pilot study does not answer all questions, that is why it is called a pilot study. Please do not try to extrapolate too much from a pilot study.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

You are correct. I see it this way:

Supposing there is a fire in your house, wouldn't you use an extinguisher, a hose, a bucket, anything instead of simply waiting for the fire brigade to arrive?

I see angioplasty as a temporary solution until research ends up somewhere. I am willing to do it as many times as it is required should my veins block again. This pilot study proved that opening the veins is safe if you do have MS and can be effective for as long as they are open. So, it is safe for us to use the extinguisher while waiting for the fire brigs! IMHO, that's terrific!

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

I'm with sou, for what it is worth, but we have the luxury of public medicine, which means we don't have to pay for the procedure (even over and over again). Now, if we could just get the procedure in Canada...

Somewhere up above, someone extrapolated the restenosis rates out to three years, and reckoned that many more would have had recurrence - I have not seen any numbers, but Zamboni's wife was still symptom-free in November 2009, and I believe she was ballooned in 2006.

Your milagro may vary.

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My name is not really Johnson. MSed up since 1993

I hate it when it happens! The decisions for a patient are not to be taken by the medical science but the politicoeconomical one. That's inhuman!

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou wrote:
The decisions for a patient are not to be taken by the medical science but the politicoeconomical one. That's inhuman!
MarkW:
I agree with you sou, it is inhuman. But even rich countries ration their public healthcare services. In the England healthcare rationing this is done by a body called NICE (National Institute for Clinical Excellence). This means a 3-5 year wait for our NHS (public healthcare). Thats why I suggest private clinics are the best route for CCSVI in England.

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Yes, I agree. I was liberated at private clinic in Greece. Same things here. It could take years for the public system to wake up. But this should not be how things work when it comes to human life. OTOH, human flesh is the cheapest, so let us not expect miracles...

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."