Multiple Sclerosis Community
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335728 tn?1331414412


FINALLY!!!  The following was an article I scrounged up online...thought you might like to see it.  I really think that the media started all this and they should be held accountable for the people who jumped to have CCSVI because the media made it sound like a miracle cure.  That is just my opinion but it ticks me off that the media will no doubt get off scott free.  Meanwhile there are gonna be people with no money, no lasting good effects, no way to get help because who can afford to go to Poland twice?  I have to tell ya, this whole situation is a HUGE thorn in my side!

"MS patients lacking follow-up after experimental procedure
Angioplasty therapy not approved in Canada"

Some Canadians with multiple sclerosis who've received an experimental vein treatment in other countries say they're now suffering complications from the surgery but having trouble getting doctors in Canada to help.

Gordon Layh of Bonnyville, Alta., went to Poland to have the controversial procedure done in June. After receiving angioplasty, or ballooning, to open one vein and getting a stent in another other vein, he and his wife said he showed much more movement.

Layh stopped having to search for words, was less fatigued and had normal blood pressure.

Suddenly, after nine weeks, Layh began to deteriorate. His neurologist said he had two blood clots near the stent, and he was prescribed more blood thinners. The couple fears what could happen if the clot moves.

"If it lets go, we were informed that he could have the clot move into his brain, which would cause a stroke," said his wife, Sindy Layh.

"I know they can fix it. He shouldn't have to wait to get into a dire situation where he is on death's door to be treated."

The couple is now exploring whether to seek treatment in the U.S. to dissolve the clot at a cost of $20,000.

Ethics of experimental procedure
Unless an emergency arises, Canadian doctors' hands are tied, said Dr. Lindsay Machan, an interventional radiologist at Vancouver Hospital.

The vein-opening procedure is not a recognized MS treatment in Canada. There are no standards on how it is to be administered, and it is not covered by provincial health insurance plans.

"It's a real struggle," said Machan, who has turned to the BC College of Physicians and Surgeons for advice. "We're right now seeking clarification."

"It is this College's expectation that physicians recognize their ethical obligation to treat patients regardless of the source of complications or illness using appropriate and tested standards of care," Susan Prins, director of communications for the College of Physicians and Surgeons of BC, said in an email.

"Physicians are not, however, obliged to repeat or redo experimental procedures which were performed outside of ethically approved research protocols."

The Layhs plan to join an MS rally at Alberta's legislature on Tuesday to fight for access to the treatment and follow-up in Canada.

The vein-opening therapy is based on an unproven theory that blocked veins in the neck or spine are to blame for MS. The theory, known as chronic cerebrospinal venous insufficiency (CCSVI), was put forward by Italian doctor Paolo Zamboni, who proposed treating multiple sclerosis by resolving the venous insufficiency by inflating small balloons to open up veins.

Lots of hugs,

10 Responses
1466984 tn?1310560608
This is why I stopped going on the National MS facebook page - there were a LOT of people fighting about this - those who would go on and say it was the way to go and people should do it ...and then those who said they were being irresponsible in promoting it.  

The media is always going to be a problem - they want to jump on the news and sensationalize - that's what they do.  The bigger problem in my mind is the docs who are actually doing the procedures.  There has been more in the press lately as far as even Dr Zamboni telling people NOT to get this procedure done outside of controlled study environment.  It's a sad situation.
335728 tn?1331414412
Sad situation is a perfect phrase for it!
1140169 tn?1370185076
I've had quite a few friends and familly question why I have not pursued having this operation done, being as how I am so proactive in my atempts to stop the progression of my MS.

I normally answer that I am waiting for it to be accepted by the Canadian medical community so that I will not have to pay for it out of pocket...but the real answer is much more complicated than that, I just don't feel like voicing my concerns and doubts every time this question is raised.

I sure hope they're onto something with regards to CCSVI, but I'm going to wait and see for now regardless of what the media has to say about it.

Like Wiggles I have given up on a couple forum sites where the CCSVI issue has changed the tone of the sites, where fighting and argueing is the norm instead of supporting and guiding one another. Luckily this MH forum is all about helping each other.

572651 tn?1530999357
Rena, you make an interesting point about the media whipping up this frenzy.  As I understand it, the channel in Canada that initially did the one-hour special on Dr Zamboni and this liberation procedure competes against another television channel.  It was an attempt to win viewers and beat out the other station that prompted them to run the hour-long special.  This is because there is such a high rate of MS in Canada, the story was sure to grab the attention of the regular viewer.  

I may be totally wrong about this, but that is what I read after the program aired.  

We have discussed this a number of times - it would be wonderful if CCSVI holds some answers to this MySterious disease, but for now the verdict is out.  Even Dr. Zamboni says don't have treatment until further studies are completed.

I've always wanted to go to China or even Poland, since my husbands grandparents came from there, but not as a medical tourist.  There are lots of people making lots and lots of money on this without anything except anecdotal evidence that it is worth going in debt for.

my two cents,
293157 tn?1285873439
It is a very sad situation I agree with that... and some people will do anything for $$.. that's the bad part.  

wobbly :(
Avatar universal
Thank you all for posting on this site!  It is nice to know there are others who think like me!
Avatar universal
Hi everyone. This is my first post and it's about CCSVI. I just want to say that I hear all your concerns and decisions to wait for studies to be completed before entertaining the thought of getting treatment for CCSVI. Please know that as a Canadian, I am proud that an American lady, Joan Beale from CA, was the person who got W5 to produce the program in Nov. 2009 about CCSIV. Since then, only one year ago, thousands have had the treatment including my son. The changes for people have been anywhere from no change to dramatic changes, there are no guarantees. We Canadians are so grateful for your American doctors who are helping us get treatment, if we choose to, because we are getting no support from our doctors in Canada, except a very few. Our Dr. Sandy McDonald is now world reknown for his treatment and expertise on CCSVI, but is no longer allowed to treat us if we also have a diagnoses of MS along with the separate medical condition now known as CCSVI. My son was denied follow up care here in Canada as have been others. This sparked both the CTV and CBC News channels to do a segment on 'care denied', just this past weekend and on Monday. I so appreciate that it is hard/impossible to read all the 'ranting and arguing' about CCSVI. Please, if you are interested, the only web site to get the least amount of that and the most up to date and professional information would be CCSVI Alliance, spearheaded by Joan Beale in California, in my humble opinion. Bless all of you who are being pro active in your journey with MS and or CCSVI.
1453990 tn?1329231426
I can understand other people's "desires" and decisions that CCSVI is "real" and that veins would act like arteries and respond to "balloon veinoplasty."   Science up to this point says that stretching a vein is not like stretching an artery.  We know that veins stretch, form varicosities and can lead to the formation of emboli.   We know that stent movement and clot formation have both occurred.  Any clot formation means there is a risk of myocardial infarction, pulmonary embolism, stroke, or infarct to any major organ. We are now finding out the stents used in muscular arteries are not appropriate for veins.  

My view is that:
1.)  CCSVI has not been proven to be a medical condition, yet.
2.)  If CCSVI exists, it has not been shown to have a causal relationship to RRMS, PPMS, SPMS, and PRMS
3.)  The current studies lack any statistical evidence to show that CCSVI treatment improves short-term or long-term clinical outcomes in patients.
4.)  Where are the blinded long term treatment trials showing that the MS community can see improvement with CCSVI treatment?

If I was grasping at straws and had huge "quality of life issues," I might consider volunteering for a controlled clinical trial.  If the evidence exists that there are significant improvements, there is always the opportunity to stop the trial and provide treatment.  To date, I have not seen any evidence of that type.    

It has taken years and rooms full of test data to get anti-cancer drugs, DMDs, new imaging technology (3T, 5T, 7T MRI, MRS, etc.,) into the clinical arsenal.  Why are we jumping at CCSVI treatment like it is the "last lifeboat on a sinking ship?"

Just like many other surgical procedures, (left ventricular assist pumps, Jarvic hearts, deep brain stimulators, cardiac balloon angioplasty, etc.) there were selection criteria and compassionate use cases.  Choosing CCSVI treatment without evidence (yes, even the doctor that coined the term CCSVI and began treating it with veinoplasty has said this) of efficacy is not wise.  

Volunteering to to be part of a clinical study is very different from medical tourism or having an unapproved and potentially life threatening surgical intervention.  Many people in the US have serious and even deadly complications from interventional radiology procedures every year.   Follow the herd mentality can be very dangerous: "10,000 Lemmings can't be wrong!"

I support designed, blinded studies to determine if:
1) CCSVI exists,
2) Veinoplasty is a short-term or long-term solution for CCSVI (if it exists,)
3) Long term treatment trials (if CCSVI exists and Veinoplasty is statistically proven to be a long term solution.)  

Until that time, I'll put my faith in the science that proves the efficacy and long term reduction is disability associated with DMDs.  

Just my opinion (and I apologize in advance if I offend anyone or any group,)

Avatar universal
33% of patients treated for CCSVI show dramatic improvement; 33% see moderate improvement and 33% see no improvment acording to the doctor who did my wife's procedure and other interventional radiologists who perform venoplasty.  My wife and I saw dramatic improvement in her symptoms when she had the procedure done 7 weeks ago.  Since then, we have seen other subtle improvements.  CCSVI treatment may not be the 'cure' for MS but it is certainly part of the puzzle.
382218 tn?1341181487
Thanks Bob for summarizing the salient points of this issue so well; I couldnt agree with you more, and have all the same questions as those you have posed.  I also personally know MS patients who have invested a lot of money in being tested and treated to no avail.

Lu, with regards to the media coverage in Canada, CCSVI and MS have definitely gotten a lot of press ever since W5 ran the initial story this time last year, from all three of the major Canadian networks.  I dont think this story in particular was run by CTV in order to to beat out another channel, any more so than any story they run.  W5 is one of those investigative journalism type shows and this is simply what they do. I saw comments about this bandied about on Facebook that seemed purely speculative, ie: that CTV was *for* CCSVI with CBC and CanWest Global against it, simply because they were ticked off that CTV supposedly beat them to it.  My impression is that these other networks have simply tended to provide more balanced coverage.  

Further, my impression is that these comments about the media coverage is the opinion of conspiracy theorists who accuse the entire medical establishment in Canada, the government, the MS Society and the media (all except CTV of course) of being in the pockets of so-called big pharma who is ultimately controlling all of this, and these forces are all working together to keep us all sick to their financial benefit.  And if you dont believe that, you are either naive or stupid or in somehow in the pockets of the drug companies too!  And the idea that neurologists are worried they will all lose their jobs because MS patients wont need them anymore (even though not all MS patients have CCSVI) is ludicrous.  There are plenty of unsolved medical mysteries in the neurology field, and no shortage of patients regardless of the long term impact (or not) of so-called liberation treatment.

Having said all that, the fact that this is so controversial does make it a hot topic in the news, and this is not a bad thing.  Putting MS in the spotlight and continuing to do so as this whole thing unfolds cant hurt in terms of generally raising awareness of the disease, and if what is learned about CCSVI ultimately helps to put the puzzle together, that would be great news for all of us.

Sorry for the lack of punctuation, have a new keyboard and cant figure out how to switch it to English!  
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