This Is MS Multiple Sclerosis Community: Knowledge & Support

It's not just the neuros.

http://www.cbc.ca/canada/newfoundland-labrador/story/2010/09/17/nl-stone-zamboni-917.html

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Carpe Diem

now we are doomed

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

he's just one guy...keep the faith

I have noticed a puzzling dynamic on this forum. There seem to be those that will defend any paper as long as it is negative. They will join any discussion as long as it is negative. But if the discussion (or topic) is positive, or even educational, these same people stay away in droves.

I think all of the issues behind all of the negative articles I have seen have been addressed here many times over. At this late date, nothing really addressing reasons not to do Liberation, is likely to crawl out of the woodwork. I know many students of propaganda say that the bigger the lie is, the more people believe it. But some of these would-be propagandists seem to think, the more times a lie is repeated, the more people believe it.

On the contrary, I think it detracts from their position by annoying the hell out of anybody still listening.

This goes for the good German Dr., and whomever else can be rustled up. We as well as many healthy people, are not listening anymore. There's too little, very much too late.

The neigh-sayers are becoming much more strident. Opinions aren't science, no matter how powerful the opinionated are.

Keep heat to da feet.

I failed in my attempt to collect names to be read on Parliament hill. But we're going to honour them with a moment of silence. Because nobody believes the people that have died on waiting lists could not have been saved by Liberation.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

It was a powerful idea. I knew of one name, but didn't know if her family would want to be included, and didn't feel right approaching them. I hope now that there are so many IRs coming onboard, there will not be these months-long waiting lists. The people who want treatment (and can travel if necessary) will get treatment.

It feels like the start of a new era once again, with all of the IRs who have applied to Dr. Hubbard. CCSVI is breaking big?

I really don't know anything about the health-care system in the US. The insurance companies paying for this? I don't think anyone's gotten that far in Canada.

Just a word, in case they're considering it, I think once they feel like they have a choice, Liberees will probably voluntarily stop poking themselves in the leg. Or going for infusions. Or taking expensive pills.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

another person that would benefit from a trip to Italy .

I have no problem with expressing a concern about how to wisely spend scarce research dollars .

That said ........ I see CCSVI funds as NEW money ...... specifically collected by pwMS ...... wanting to go in a new and promising direction ...

And it is possible to keep funding MS research in existing studies.

That young MS researcher in Alberta ...... who has some very interesting results in her gene study ..... should get as much funding as needed.

No stone must be left ..... unturned . Including CCSVI .




Mr. Success

no stone unturned for sure. seems if it is for a drug the ms society has not a big problem. but look in this relatively short time by people getting together about ccsvi has brought out more possible connections to ms. mostly for one reason or another effects blood flow.

i maintain and always will that the trauma in my life started this mess for me that they call ms. now there are more and more people coming out that can relate to this. so, chiropractics and neurosurgeons should be included in this fund money. looking very closely at the spine and neck which again can effect blood flow.

i feel along with ccsvi ctos should be being looked at closely. i really hope some of the dr.'s working with ccsvi are taking a closer look at this. there again, blood flow.

hughes syndrome "sticky blood". the ms society ignores that too. no, a trauma would not cause sticky blood. but, if a person would have that or mthfr like i have and a trauma brought on restrictions or stenosis to me or for some who have problem veins for other reasons thick blood would even create more of a problem with flow.

then there are infectious diseases like lymes that once cleared up "if you're lucky enough it's caught in time-the so called ms clears up.

then there is the allergy aspect. some certain foods or inviroment that causes people to get worse or some believe causes ms. i need help on that one and not sure but don't allergic reactions cause inlflamation and swelling? so if you have that i would think that would put some restrictions on blood flow.

hbot- again there it is oxygen blood flow.

any how, what this really is about is ccsvi, but what i'm getting at is something all of us basically talk about and know.

with all the yrs. and money spent on drug research they are still shooting blanks. but they still don't seem to have a problem putting research money there. i wish a magic drug would have been the solution for all of us but they aren't even close.


l feel if they really are looking out for our interest they would be seriously looking into and funding ccsvi, chiro. etc. they would really be listening to us the people that have been branded with this so called ms.

i really believe that we all have symptoms that someone decided to throw into one pile and name it ms and by makeing it one disease they could streamline it into a big money makeing drug business and just keep the money flowing in a big circle of greed and resisting and stopping anything that might upset their apple cart.

Blossum - let us hope the N L cardiologist was misquoted by the media - as many here have experienced .

I would hope that one respected health professional would give another respected health professional ..... the courtesy of a private exchange of dialogue .... if they are in disagreement .

That said .... you will find numerous examples of health professionals offering opposing views ..... that is why they say '' get a second opinion ''

Our Dr. Scalafani has in his posts .... given examples of this ... over the course of his career .

It's okay to disagree.

I for one ..... hate a '' yes man '' ................ more can be learned by pointing out possible negitive outcomes .....

The ECTRIMS meeting coming up should be the most interesting and important CCSVI exchange of ideas - between health professionals - thus far.

I hope TIMS has a mole planted .





Mr. Success

As my handle suggests, I live in Newfoundland. Dr. Stone is just telling it like it is - sadly.

Some context:
1. Newfoundland & Labrador is a relatively poor province, which is only now coming into its own due to oil revenues. It is still hard to attract and retain specialist doctors to treat the 510,000 residents, and the publicly funded system is both cash starved and labour starved. There are very few interventional radiologists (5 I think - not including similarly trained cardiologists who are very busy with our country leading heart risk), and they are very busy folks. If these doctors are treating MS patients, it really does mean that they are not treating someone else.

2. The Newfoundland gov has put up some money to track the progress of Newfoundlanders who have gone abroad to get the treatment, and measure their progression/improvement over time. We should all applaud this initiative. I have met one of the neurologists doing the tracking study, and he is an open minded guy - and hopeful that this amounts to something - but still skeptical. (He happens to be my wife's neuro - and she will be treated in Albany next week.) They are following the patients of foreign surgeons with before and after assessments and trying to get some local knowledge base around the benefits. NO TREATMENTS HERE. If they can establish benefits, the medical community will be more open to taking the next step of funding treatments, but benefit will need to be established elsewhere first. This is all Dr. Stone is saying.

3. The debate here in Newfoundland is in a unique place. The local chapter head of the MS Society in St. John's (capital of Newfoundland and Labrador) resigned after the bogus CIHR MSSC panel said there was no justification for treatment trials of the liberation treatment. The whole province only has about half a million people - and yet people are taking real notice of this issue. Our province is first out of the blocks to try to get some real data on how patient groups are doing. While this is better than nothing, people are still clamoring for treatment here. This expectation is unrealistic.

Dr. Stone is trying to temper people's expectations as to why they need to continue to wait until there is some published corroboration of the benefits found by Zamboni's team. As soon as benefit is accepted, they will treat - but Newfoundland is not a center of excellence for interventional radiology innovation - nor can it realistically be expected to be. None of the 5 IRs here have had special training in CCSSVI and none have performed any MS related balloon percutaneous angioplasties - let alone the 50 or so needed to get any good at Liberation.

Even after the teams in Poland and Bulgaria publish their corroborations of Zamboni's work (if they do), common protocols on treatment will need to be developed before Newfoundland & Labrador is likely to offer any treatment to its residents. While there is no standard protocol on how to do the procedure; how can the little ol' Newfoundland public medical system (MCP) be expected to pay for the treatment? Are the 5 overworked IRs supposed to create their own protocols and stop doing the rest of their work?

People in very urban areas should be pissed because they have access to best in class medical care and are being denied access to this treatment; but people in Newfoundland understand that you need to travel for some types of care. For instance, 35 Newfoundland maternity cases required travel to Ontario this summer alone. For some clearly beneficial, routine procedures, Newfoundland simply does not have the resources.

I just hope my wife has a non-negative experience with her treatment next week, and that by this time next year, there are a few more publications which will get us closer to local, qualified, standardized follow up care. Newfoundland will not be the first place in Canada to offer this treatment - or if it is, there is something truly nefarious going on elsewhere.

Nicknewf, thank you so much for the explanation. It's amazing how some local knowledge can really put things in perspective.

nicknewf - assuming your information is correct .... in describing the state of medical care in NewFoundland ..... can Dr. Stone be considered a top - of- his profession doctor ?

You say ..... many ..... including your wife ..... need to seek medical care in other places outside of NL .

Is this because of patient overload ..... or lack of local expertise ?

Sorry if this sounds harsh ..... but .... it is what it is .

Given a choice between Dr. Dake in Stanford or Dr. Stone in NewFoundland ........ I'm pretty sure where and who I would seek.

Sorry old boy ...... NL is beautiful ....... but certainly not capable of providing pwMS with CCSVI .......

I still think Dr. Stone was misquoted ..... or misunderstood.



Mr. Success

Over here, cardio IRs and other IRs are two different distinct groups of IRs.
The cardio specialists typically get paid 3 times as much per intervention as other IRs (who do the limbs, other organs and so).
Why? Because there is more risk involved when working on the heart than on the other organs or the limbs? Perhaps over time the situation has indeed developed like that for this reason.

And perhaps cardio vascular specialists see as well a whole new area developing here for neuro-vascular treatment.
With as yet perhaps unquantified and unqualified risk, but also with a lot of untapped potential, perhaps something as big as the cardio field.
And perhaps, these cardio IRs see an important role for themselves here as well.

Then, if you'r not in control, what do you do? You call for more research, try to delay things, buy yourself time to get to grips with the issues.
Perhaps that is how this statement by this N.L. cardio doctor needs to be read.

I know there is a lot of speculation and unknowns. And I have thought about posting this mesage or not several times for that reason. But then, since this is a public forum where we all share and help each other, I decided to put this here for your reflection because there may be some truth in this.

If so, this statement by this cardio doctor needs to be read against a very different background and context than challenging ccsvi itself.
The number of times 'money' appears in his statement would in any case suggest that he is thinking about something else than just the merits of ccsvi liberation.

* Generally, when necessary, Newfoundlanders and Labradoreans seek help elsewhere because of lack of specialized expertise - and typically the government will pay for procedures performed in other provinces on this basis. Waiting lists for procedures tend to be long if not life threatening - but if there is someone competent here to perform it, it will eventually get done.

* Our own premier (governor equivalent for Americans) made headlines this year when he went to stateside for heart surgery. It became part of the medicare debate in the US.

* Dr. Stone would be the one of the top cardiologists here - but our premier obviously didn't trust him to perform his operation.

* I'm not sure if Cardiologist make that much more money than IRs on a per procedure basis in Newfoundland; but they certainly don't have to work hard to find patients! Our diets are very high in fat and salt.

* There is no one here my wife would be comfortable with in terms of performing the procedure or follow up care - no one here is trained in CCSVI treatment, and it is not a centre of excellence where new procedures can be innovated. There is a university teaching hospital; but I don't think much hard core research into new procedures is actually done here.

* I think it is great stuff that the neurology community here is being so open minded about CCSVI, and that the local MS chapter head resigned over the CIHR/ MSSC debacle. The local government is also not negative which is a step in the right direction.

* If we lived in Belgium - we'd have already been down to Bulgaria or over to Poland for the treatment. As it stands, we feel lucky to be going to Albany in SEVEN DAYS!


Yes, the medical system in Newfoundland is not perfect; but at least it is accessible to everyone. In 5 years when this is standard practice (fingers crossed), all my fellow citizens will have access to the treatment, while tens of thousands in the US may be unable to afford it - and that will be very sad.

Leonard,

There is no way Dr. Eric Stone - Eastern Health Cardiologist and Clinical Associate Professor of Medicine, Memorial University - would make more money doing Liberation therapy than he is currently making doing angioplasty. Yours is an interesting theory, and may apply elsewhere; but ours is a fully public health care system, and there is no supply competition for medical services. He can work as much as he wants.

Interestingly, the best argument against the claims of CCSVI naysayers who suggest that the Polish and Bulgarian doctors are simply in it for the money, is that they are running clinical trials to validate the procedure. As soon as the procedure is validated, the demand for their services from foreigners evaporates.

I do not question the motives of either Dr. Stone or Dr. Simka in this regard.

However, I do question the motives of neurologists in Canada, for whom managing MS drug therapies accounts for 50% of their practices. I am sure that in Northern Europe the ratios are similar. In very short order, we would have twice as many neurologists as we need - and all of them would need to relearn what they do know about the biggest source of work for them. Talk about daunting. Not to mention the moral grief of having to come to grips with improperly treating all those patients for years and years, essentially because they refused to behave professionally and practice with an open mind.

This is going to be very depressing for them.