This Is MS Multiple Sclerosis Knowledge & Support Community

Have been reading all the posts and not weighing in. Here is how I feel.

Why the MS Society policy on CCSVI is terribly wrong and failing patients:

There is global medical activity taking place that has already demonstrated that clearing constricted veins in MS patients will halt symptom progression for most and improve symptoms for many.
Patients are reporting great improvement and because this is the case enlightened jurisdictions are treating more by the hundreds. Although not planned or coordinated, a global Meta study is nonetheless taking place.

Although leading edge Vascular Surgeons and Interventional Radiologists have been refining techniques vascular medical intervention has been established practice for over twenty years.
The risks in performing CCSVI procedures are known and they are low.
In the face of this evidence the MS Society is saying the current medical understanding of CCSVI and its relationship to MS does not support immediate treatment. They and the Neurologists advising them are saying NO to patients in horrific decline.
Instead they are only funding Canadian studies that researchers say will take years.

They are warning against the terrible risks of CCSVI treatment while not providing the very low odds of those risks.
They are advising that patients do not get involved in any CCSVI procedure outside of an established study when were a patient to be in a study they might be a placebo control and get no treatment. Studies will just do exactly the same procedure a patient would get in any proper medical facility otherwise.

There was one serious study in 2001 that reported the placebo effect was largely an illusion. The placebo effect itself has never been fully studied.

The MS Society could advocate that Canada approve CCSVI treatment and that attending neurologists continue to track the progress of patient symptoms as they already do. This could become it’s own very important Meta study.

They could advocate that Canada take a lead role and join the Global Meta study.

Instead they seem to think it is up to Canadian researchers to duplicate work that has already taken years. These will be years of terrible decline and early death for thousands.
The MS Society is failing MS patients and letting them deteriorate when there is a chance to help them here at hand.

1. CMSS site 07/06/2010. Below is how the MS Society describes the potential complications of a procedure known to have a low risk. Note the bolded operative words
What are the potential complications for this procedure?

Endovascular intervention for CCSVI is an invasive procedure and as such, does carry a risk for significant complication. Two cases have been described in the January Issue of the Annals of Neurology. In August of 2009, a 51-year-old woman died from a cerebral hemorrhage attributed to the blood thinner she was taking to minimize the risk of clot formation post endovascular intervention for CCSVI. In November a second event was documented when a stent, inserted in the jugular vein to maintain vein flow, dislodged itself and travelled to the heart. Open heart surgery was needed to retrieve the stent. Other possible complications of this endovascular intervention may include, but are not limited to:

a. Bleeding and / or bruising at the at the insertion site.
b. Perforation and hemorrhage along the path of the vascular catheter as it is advanced.
c. Dislodgement of blood clots along the path of catheter, resulting in heart attack or stroke.
d. Formation and dislodgement of clots from the tip of the catheter.
e. Infection.


Regards,
CharlieC

Apologies. Repeating the posting on the MSS website with the bolded operative words.

1. CMSS site 07/06/2010. Below is how the MS Society describes the potential complications of a procedure known to have a low risk. Note the bolded operative words

What are the potential complications for this procedure?

Endovascular intervention for CCSVI is an invasive procedure and as such, does carry a risk for significant complication. Two cases have been described in the January Issue of the Annals of Neurology. In August of 2009, a 51-year-old woman died from a cerebral hemorrhage attributed to the blood thinner she was taking to minimize the risk of clot formation post endovascular intervention for CCSVI. In November a second event was documented when a stent, inserted in the jugular vein to maintain vein flow, dislodged itself and travelled to the heart. Open heart surgery was needed to retrieve the stent. Other possible complications of this endovascular intervention may include, but are not limited to:

a. Bleeding and / or bruising at the at the insertion site.

b. Perforation and hemorrhage along the path of the vascular catheter as it is advanced.

c. Dislodgement of blood clots along the path of catheter, resulting in heart attack or stroke.

d. Formation and dislodgement of clots from the tip of the catheter.

e. Infection.

I think this is well analyzed, thanks for posting. I really can't talk about the MS Society without getting mad; I think they really failed us on this one.

Remember C2010, that this procedure is NOT new - it is performed (at least on jugulars and other veins) for dialysis patients quite frequently.

IRs are not treating MS, just as they're not treating diabetes or kidney failure - they're treating venous abnormality and much is still to be learned, but the procedure of ballooning veins is not new. And there's a risk to any surgery.

I agree w/Cece - NMSS will get no further support from me until they recognize this procedure needs their support for more research.

When clogged arteries were discovered to relate to heart disease, they treated as they did trials and thus prevented deaths. How many MS related deaths have to occur, and how far does quality of life have to descend for MS patients before this procedure is given the funding for research and treatment by trained doctors for consenting patients?

Yes the risks you list are real and most if not all are already posted in a sticky in this forum.

This was in a newspaper article reporting about the Alberta Health Services document;

"It reminds people that it is a potentially dangerous procedure that they're doing," said Darrel Gregory with the MS Society of Alberta.
"You mess around with your jugular veins and if something goes wrong you could be in serious trouble."

From this article ; http://www.vancouversun.com/health/ther ... story.html


EDMONTON — A controversial treatment that promises relief from the daily torment of multiple sclerosis has created a deep rift between its proponents and those who say it doesn't work. And helping to drive the debate is social media, where it can be difficult for people to determine the truth.


Neil Pierce, president of the Alberta division of the MS Society of Canada, said he knows other patients who don't want to publicly share their stories of disappointment, after the liberation procedure failed them, because of the backlash they expect to face from people within the MS community. "It's been so divisive," he said


WOW, I thought those stories are welcome here and have their own sticky.
After watching Dr. Sclafani on video last night he talks about the different types of ccsvi potentially being resonsible for varying degrees of improvement post liberation. This is just one of many many concepts that continuing research will help us understand.

I am having the procedure done here in the USA next Tuesday and I will certainly share here on this board the good and the bad... whatever happens and whatever doesn't happen. I want to be helped, but I will be honest about the results. As for being dangerous, my PCP gave me the thumbs up for the procedure and he is no quack believe me. I don't know why we are constantly being warned about the danger. I think if the IR is a reputable doctor then there is little danger. Don't the people from the MS societies understand the suffering of people with MS ?

ozarkcanoer

Cece, I feel as you do. The MSS of Canada has let us all down terribly, and our anger at this situation should be understood.

Selkie, my arguments and yours are the same. I think you may have misunderstood my posting. I know that this procedure is not new or experimental, although the MSS of Canada enjoys portraying it as such.

Agreed. There is risk to any surgery or procedure, and yet both go on each and every day in our hospitals. There are far greater risks to the drugs being offered to MS patients.

For my personal situation, I feel that when it comes to this procedure the benefits far outweigh the risks. Like many others, I will have to travel to another country for a procedure I should be entitled to have right here in my own country.

BTW, I posted the warnings from the MSS of Canada website because I wanted to illustrate their attempt at fear-mongering where this procedure is concerned.

Garyak, thank you for the link - I have not read this article yet.

Regards,

CharlieC

ozarkcanoer, won't be long for you. Best wishes for Tuesday.

You have a great PCP. The warnings are pure and simple fear-mongering, to keep us from seeking treatment and adding to the increasing number of positive testimonials to the efficacy of this procedure, and any improvements patients are experiencing.

Our improvements from the procedure will undoubtedly vary. It is important to share the good and the bad.

It is apparent that the MSS of Canada does not care about the suffering of people with MS.

Regards,

CharlieC

FOOT ON THE ACCELERATOR!!!

Yves Savioe of the Canadian MSS is fond of saying that when it comes to researching CCSVI; they have their foot on the accelerator.

What a reassuring metaphor.

Why .. In a few short years, they will know if there really is any connection.

A few very short years after that they will have determined whether there is any useful treatment.

A year or two after that, the government will make treatment available.

Some time after that, they will get to every one.

I am already a technical quad, by then, I figure to have lost all of my function.

No, it is not the accelerator they have their foot on.

It is the brake.

Lucky for us CCSVI treatment has a lot of momentum.

The MS Society car will go off the road soon enough.

And we won’t have to listen to this guff any longer.

The MS Society car will go off the road soon enough.

And we won’t have to listen to this guff any longer.

I could not agree with you any more.

We are but dollar signs to these people who claim they are helping us.

I wonder how these people sleep at night.