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An article regarding "libertation treatment" risks...
Quebec doctor warns of 'liberation treatment' risks:
CTV.ca News Staff
Date: Wed. Nov. 10 2010 10:04 AM ET
The president of the Quebec Association of Radiologists says he agrees with a warning issued by Quebec doctors to multiple sclerosis patients urging them not to seek the "liberation" treatment at clinics outside Canada.
Dr. Frédéric Desjardins says the balloon angioplasty used in the liberation treatment carries known risks that are not insignificant.
The procedure involves inserting a catheter into a vein and then inflating a balloon to unblock the vein. While angioplasty is performed every day on heart patients with blocked coronary arteries, Desjardins warns it is not risk-free.
"We don't know the benefits of this procedure and the procedure has some risks to it. So in medicine, it's always a balance between risk and benefit," he told CTV's Canada AM Wednesday morning from Montreal.
Desjardins explained that there are known complications from angioplasty, including the possibility of thrombosis, which is the formation of a blood clot inside a blood vessel. The procedure can also cause an embolism, which is a clot that travels along a vessel until it clogs the vessel, or a CVA (cerebrovascular accident), also known as a stroke.
Desjardins says it's hard to say how many Canadian MS patients who have undergone the liberation treatment outside of Canada are experiencing these complications.
"Right now, in Quebec, we don't have a registry of complications, because people are doing this on their own," he said.
"What we know so far is that in the small clinical trials already going on, there are some complications."
No medical centres in Canada are performing the liberation treatment outside of a clinical trial. So many MS patients are travelling overseas, spending upwards of $20,000 to travel to clinics in Costa Rica, Poland, and elsewhere, where doctors can offer them the treatment.
While some patients are returning home reporting no benefits from the procedure, many others say the treatment offers them relief of some of their symptoms, such as increased energy and better balance.
But on Tuesday, the Quebec College of Physicians held a news conference to say that much more research is needed on the treatment and warned MS patients not to seek the treatment overseas.
College president and CEO Dr. Charles Bernard noted that while balloon angioplasty has been used for years to widen coronary arteries, the procedure may have poorly documented risks when used in veins, which can have thinner walls and are more vulnerable to damage and blood clots.
He added that it's not clear that there is a link between neck vein blockages and multiple sclerosis. And he advised patients to wait until more research is done on CCSVI, the term coined by Italian surgeon Dr. Paolo Zamboni, and on the treatment.
"The college is saying to them today that we need to wait for the results of studies that are currently underway before generalizing Professor Zamboni's treatments," Bernard said.
"In particular, we are recommending to these individuals that they refrain from consulting any medical tourism clinics offering these treatments prematurely with little regard for their effectiveness and side-effects."
Dr. Zamboni himself has also warned patients to refrain from getting the treatment except in the context of an approved clinical trial.
"Surgery is not recommended at this stage," Zamboni told an MS conference in Sweden last month.
I found this really interesting and they are finally starting to realize that MS patients could be putting themselves at risk by having this done outside an approved clinical trial! Last night I saw an article on the news about a new superbug that has shown it's nasty head here in Canada but it's believed it came from India. There are "Liberation Treatments" being done in India and a person would be leaving themselves open for this drug resistant superbug by being treated in a medical setting in India and in turn putting others at risk by spreading this superbug. I guess in the long run it's up to the individual but I am happy that the possible downside of this treatment is finally being made public.
Lots of Hugs,
Rena
CTV.ca News Staff
Date: Wed. Nov. 10 2010 10:04 AM ET
The president of the Quebec Association of Radiologists says he agrees with a warning issued by Quebec doctors to multiple sclerosis patients urging them not to seek the "liberation" treatment at clinics outside Canada.
Dr. Frédéric Desjardins says the balloon angioplasty used in the liberation treatment carries known risks that are not insignificant.
The procedure involves inserting a catheter into a vein and then inflating a balloon to unblock the vein. While angioplasty is performed every day on heart patients with blocked coronary arteries, Desjardins warns it is not risk-free.
"We don't know the benefits of this procedure and the procedure has some risks to it. So in medicine, it's always a balance between risk and benefit," he told CTV's Canada AM Wednesday morning from Montreal.
Desjardins explained that there are known complications from angioplasty, including the possibility of thrombosis, which is the formation of a blood clot inside a blood vessel. The procedure can also cause an embolism, which is a clot that travels along a vessel until it clogs the vessel, or a CVA (cerebrovascular accident), also known as a stroke.
Desjardins says it's hard to say how many Canadian MS patients who have undergone the liberation treatment outside of Canada are experiencing these complications.
"Right now, in Quebec, we don't have a registry of complications, because people are doing this on their own," he said.
"What we know so far is that in the small clinical trials already going on, there are some complications."
No medical centres in Canada are performing the liberation treatment outside of a clinical trial. So many MS patients are travelling overseas, spending upwards of $20,000 to travel to clinics in Costa Rica, Poland, and elsewhere, where doctors can offer them the treatment.
While some patients are returning home reporting no benefits from the procedure, many others say the treatment offers them relief of some of their symptoms, such as increased energy and better balance.
But on Tuesday, the Quebec College of Physicians held a news conference to say that much more research is needed on the treatment and warned MS patients not to seek the treatment overseas.
College president and CEO Dr. Charles Bernard noted that while balloon angioplasty has been used for years to widen coronary arteries, the procedure may have poorly documented risks when used in veins, which can have thinner walls and are more vulnerable to damage and blood clots.
He added that it's not clear that there is a link between neck vein blockages and multiple sclerosis. And he advised patients to wait until more research is done on CCSVI, the term coined by Italian surgeon Dr. Paolo Zamboni, and on the treatment.
"The college is saying to them today that we need to wait for the results of studies that are currently underway before generalizing Professor Zamboni's treatments," Bernard said.
"In particular, we are recommending to these individuals that they refrain from consulting any medical tourism clinics offering these treatments prematurely with little regard for their effectiveness and side-effects."
Dr. Zamboni himself has also warned patients to refrain from getting the treatment except in the context of an approved clinical trial.
"Surgery is not recommended at this stage," Zamboni told an MS conference in Sweden last month.
I found this really interesting and they are finally starting to realize that MS patients could be putting themselves at risk by having this done outside an approved clinical trial! Last night I saw an article on the news about a new superbug that has shown it's nasty head here in Canada but it's believed it came from India. There are "Liberation Treatments" being done in India and a person would be leaving themselves open for this drug resistant superbug by being treated in a medical setting in India and in turn putting others at risk by spreading this superbug. I guess in the long run it's up to the individual but I am happy that the possible downside of this treatment is finally being made public.
Lots of Hugs,
Rena
Rena,
Thanks for sharing this. We've watched the CCSVI story unfold and be carried out in the public arena thanks to activists in the MS area, particularly patients. I can't remember another example where medical research/policy has been driven so far and so fast by public opinion and outcry.
Like so many others, I would love CCSVI to be the answer, but it is much too early to know this. Even Dr. Zamboni has reservations and refuses to call this a cure; and while he has treated his wife, she continues to take her MS disease modifying drugs.
Somewhere I have read that MS patients are highly susceptible to the placebo effect- it has been shown to be as high as 60%. With that type of rate, we need serious controlled studies to understand CCSVI and if it really does work.
Anyone who is interested in learning more about the discussion, can go to facebook and put in CCSVI. There are quite a few pages devoted to the topic. A very pertinent one is discussing the need to have the procedure done close to home, where you can have followup care by your own doctors. Medical Tourism has taken off with this - you can go to eastern Europe (Romania, Bulgaria) , the middle east (Saudi Arabia), central and south Americas (Costa Rica, Mexico), and Asia (China, India) to have this procedure done if you have enough money (rates I've heard from $15,000-$40,000 including the travel).
There is also the convincing argument for why you should have a team of medical people close to home to help you post-CCSVI treatment.
best,
Lulu
Thanks for sharing this. We've watched the CCSVI story unfold and be carried out in the public arena thanks to activists in the MS area, particularly patients. I can't remember another example where medical research/policy has been driven so far and so fast by public opinion and outcry.
Like so many others, I would love CCSVI to be the answer, but it is much too early to know this. Even Dr. Zamboni has reservations and refuses to call this a cure; and while he has treated his wife, she continues to take her MS disease modifying drugs.
Somewhere I have read that MS patients are highly susceptible to the placebo effect- it has been shown to be as high as 60%. With that type of rate, we need serious controlled studies to understand CCSVI and if it really does work.
Anyone who is interested in learning more about the discussion, can go to facebook and put in CCSVI. There are quite a few pages devoted to the topic. A very pertinent one is discussing the need to have the procedure done close to home, where you can have followup care by your own doctors. Medical Tourism has taken off with this - you can go to eastern Europe (Romania, Bulgaria) , the middle east (Saudi Arabia), central and south Americas (Costa Rica, Mexico), and Asia (China, India) to have this procedure done if you have enough money (rates I've heard from $15,000-$40,000 including the travel).
There is also the convincing argument for why you should have a team of medical people close to home to help you post-CCSVI treatment.
best,
Lulu
thanks for the information, it's good to have all the info we can get. There is alot to think about before anyone goes for this treatment..
take care
wobbly
take care
wobbly
Thanks for posting this Rena.
While we all want some relief from our MS symptoms, I can't help but feel the so called liberation treatment has gotten way ahead of itself.
We keep getting bombarded with stories of possitive outcomes after the proceedure. The negative stories don't seem to get the same press coverage (maybe there aren't as many or them??)
It's interesting that Dr Zamboni himself is recommending people do not get this surgery outside of clinical trials.
Treating CCSVI at this point is a very personal choice. I don't feel it's right for me right now, not yet anyway.
To those who have or are planning to have it done, you are brave pioneers and I wish you nothing but good wishes and good health! The rest of us will benefit from your experiences.
Mike
While we all want some relief from our MS symptoms, I can't help but feel the so called liberation treatment has gotten way ahead of itself.
We keep getting bombarded with stories of possitive outcomes after the proceedure. The negative stories don't seem to get the same press coverage (maybe there aren't as many or them??)
It's interesting that Dr Zamboni himself is recommending people do not get this surgery outside of clinical trials.
Treating CCSVI at this point is a very personal choice. I don't feel it's right for me right now, not yet anyway.
To those who have or are planning to have it done, you are brave pioneers and I wish you nothing but good wishes and good health! The rest of us will benefit from your experiences.
Mike
I think people are jumping the gun a little - opting for this treatment when actually there's not enough data to prove that it's beneficial. And I can attest that blood clots are not casual.
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