My apologies if this is a Fata, but did a quick scan of the first few pages and found nothing.
I know a guy in Calgary who is flying overseas to get this treatment done to the tune of $25,000, but it will be well worth the benefits.
The government does not support or fund this treatment, but from all accounts this treatment works and allows for a much better quality of life for MS sufferers.
It's time for the government to step up and fund this treatment, and approve this treatment for people with MS.
The government won't (and shouldn't) fund it until there is defensible evidence it works. Right now there is just anecdotal evidence, and even that is mixed (lots of people have had the treatment without it working). The proposed mechanism is inconsistent with current understanding of MS, attempts by others to duplicate the clinical results have generally not been successful, and the way it is being marketed resembles a lot of past cancer scams, so there's a lot of skepticism on the part of the medical community. There seem to be enough anecdotal reports that it's worth investigating further in my opinion (but I'm not an MS expert). Some experts have suggested the vein blockage might be a symptom of some cases of MS, which might explain the beneficial effect (there's probably at least some placebo effect going on there too, which MS is fairly susceptible to) - but if that's the case it might only be temporary. For the sake of people with MS I hope this does lead to an effective treatment, but the health system isn't meant to fund experimental treatments.
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The government won't (and shouldn't) fund it until there is defensible evidence it works. Right now there is just anecdotal evidence, and even that is mixed (lots of people have had the treatment without it working). The proposed mechanism is inconsistent with current understanding of MS, attempts by others to duplicate the clinical results have generally not been successful, and the way it is being marketed resembles a lot of past cancer scams, so there's a lot of skepticism on the part of the medical community. There seem to be enough anecdotal reports that it's worth investigating further in my opinion (but I'm not an MS expert). Some experts have suggested the vein blockage might be a symptom of some cases of MS, which might explain the beneficial effect (there's probably at least some placebo effect going on there too, which MS is fairly susceptible to) - but if that's the case it might only be temporary. For the sake of people with MS I hope this does lead to an effective treatment, but the health system isn't meant to fund experimental treatments.
There are a lot of people who this has worked for. Of course this treatment isn't going to have a 100% success rate, but from people I've talked to this treatment works. My brother in law who is a MD says this treatment is a break through that the MS society is trying to downplay because they are probably worried if people find out there is a treatment that works they will stop donating to them and other treatments they are working on might suffer from a lack of financial support.
I'm really looking forward to see this treatment available to anyone with MS funded by the government.
Why can someone with blocked arteries of the heart get stents put in to prevent a heart attack?
Why can someone with blocked carotid arteries get a stent put in to prevent a stroke?
Why can someone with blocked abdominal aorta get a stent put in to prevent an abdominal aneurysm?
While someone suffering from MS in Canada can not get a stent put in to give them some relief of their symptoms?
Personally, I think this is a discriminatory practice.
We have a friend suffering from MS and he can not even get an ultrasound to see if his veins are blocked. You have to manufacture some other excuse to get such an ultrasound or else go outside of Canada...because as soon as they hear you are suffering from MS, no no no, you can not get an ultrasound of your neck or head.
I am not saying this so called liberation treatment is magic, or that it cures MS. But it seems in a large number of cases, it gives those suffering from MS significant relief. And I think that should at least be one of the goals of our health care system, to aid people in getting relief for whatever malady ails them.
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my cousin who has MS is flying down to San Diego at the end of October to have this surgery done. with the cost of surgery plus flight and lodging, they're looking at a bill around $15,000. right now he's 36 and has lost most of the use on the left side of his body, so i'm really hoping that this works out for him. either way i'll have some first hand knowledge of just how well this surgery works in a month or two
My mother is a 40 year MS sufferer. She has the remmisive form where she goes all gibbled in a certain area of her body, but eventually bounces back after 5 or 6 months. She has an attack of it every few years or so. She looked into this surgery, and there is a major problem that Zamboni does not like to discuss. The stents they use are designed for arteries which are far more robust, not veins. There is fear that these stents will cause irreparable damage to the veins in the long term, and the damage my come very quick.
Also I may have arteries and stents mixed up, but that was the jist of it, when I suggested she look into it. Her MS specialist said if the treatment proves to be successful after it has actually been PROPERLY researched, he will prescribe it to every single one of his qualifying patients. However right now the studies are shaky, and sample sizes far too small to be taken serious at this time.
My wife has MS and I too am concerned that it's taking so long to get definitive results.
We went to visit my wife's neurologist a few months ago, and to summarize my understanding of what he said:
1. They are presently trying to replicate the results achieved in Italy, which was not a blind study i.e they knew who had MS. So I assume a much larger group, coupled with a double blind study, will take considerably longer to do.
2. They have considerably more experience entering arteries than veins. The veins are narrower in diameter and thinner walled and have a tendency to bleed when you enter them. So there are risk elements which they have to work out.
3. They have not worked out the protocol for the MRI yet.
4. The work, done to date, has been done mostly on people with relapsing/ remitting, and not secondary/progressive which my wife has.
When we quizzed my wife's doctor recently about the procedure, he said, "Don't be the first to have the operation, and don't be the last".
The government won't (and shouldn't) fund it until there is defensible evidence it works. Right now there is just anecdotal evidence, and even that is mixed (lots of people have had the treatment without it working). The proposed mechanism is inconsistent with current understanding of MS, attempts by others to duplicate the clinical results have generally not been successful, and the way it is being marketed resembles a lot of past cancer scams, so there's a lot of skepticism on the part of the medical community. There seem to be enough anecdotal reports that it's worth investigating further in my opinion (but I'm not an MS expert). Some experts have suggested the vein blockage might be a symptom of some cases of MS, which might explain the beneficial effect (there's probably at least some placebo effect going on there too, which MS is fairly susceptible to) - but if that's the case it might only be temporary. For the sake of people with MS I hope this does lead to an effective treatment, but the health system isn't meant to fund experimental treatments.
I flew to Costa Rica this summer with my friend so she could undergo this treatment. There are a few things I can tell you about it...
Stents are not necessary; the procedure is balloon angioplasty which is a common treatment in arteries currently. Balloon angioplasty is not without it's own hazards but the government funds it.
If a person that has not been diagnosed with MS requires this treatment, they are given it. Why the difference?
After being down there and seeing the AMAZING results, I really with the government would hurry up and allow this treatment. It isn't for ALL MS sufferers; in fact only 80% of MS sufferers scanned for CCSVI have it. However, if I were running the government, I would much prefer to pay for a one time treatment that may put off home care/assisted living for potentially years than I would paying for that home care/assisted living. I know without a shadow of a doubt that most MS sufferers would rather have the procedure and gain a little (or even nothing) than not have it and only have further degeneration to look forward to.
And my friend is secondary progressive. Results have been slow for her but she doesn't regret the $20,000 she spent on the trip AT ALL.
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I would also like to add that much of the hold up is that MS is a neurological disorder and this is a vascular one; most MS researchers just don't want to divert funds into vascular research when MS is a neurological disorder. I totally understand this viewpoint, however why would anyone wish to deny someone suffering from such a horrible disease the opportunity to get BETTER? No one is saying this is a cure, but if anyone can gain back even some mobility, it's worth it, IMO.
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My main beef is, why can anyone, except someone suffering from MS, get treatment for a blockage? Shouldn't everyone be eligible for treatment of a blockage in their body, no matter if you have MS or not?
MS patients are treated like second class citizens in this matter.
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My main beef is, why can anyone, except someone suffering from MS, get treatment for a blockage? Shouldn't everyone be eligible for treatment of a blockage in their body, no matter if you have MS or not?
MS patients are treated like second class citizens in this matter.
Which is why MS sufferers have stopped calling this the Liberation treatment and have started asking for "Angioplasty for All".
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I'm not sure I'd jump off to straight funding of this treatment yet. There are too many questions as to why it works and how effective it actually is. I know we've heard many accounts of people flying over and getting it to come back with an increased quality of life, but a larger, more controlled, sample size is needed to weight the pros, cons, and effectiveness.
I don't support the current stance, but I don't want to see full support of this yet. If some Canadian clinical trials were done and prove effectiveness, then I'd love to see this thing supported.
My main beef is, why can anyone, except someone suffering from MS, get treatment for a blockage? Shouldn't everyone be eligible for treatment of a blockage in their body, no matter if you have MS or not?
MS patients are treated like second class citizens in this matter.
The problem is though, that it hasn't been demonstrated that they actually have a blockage. Dr. Zamboni claimed that 100% of the MS patients he tested had this blockage, but other researchers have not been able to duplicate this result, or even demonstrate that MS patients are more likely to have the blockage than the general population. The other issue is that, as others have stated, the blockages that are being treated in others are generally arterial blockages, whereas the "Liberation" treatment involves veins.
I really do hope this turns out to be a legitimate treatment, I support further investigation, and if it does turn out to be legitimate then I'm all for the government funding it - but no novel treatment should ever be funded without proper clinical evidence (including some indication of who it would benefit and who it wouldn't), particularly a potentially risky and somewhat expensive treatment.
The problem is that Zamboni is suggesting insufficient blood flow as the important culprit. However, in an interim review of a large trial (1700 planned; first 500 reported), Zamboni's 5 point criteria to define poor flow applied to 22% of normal volunteers as well (compared to 56% of MS patients). This type of equivocal finding for a feature that is supposed to be an important *root cause* of symptoms does merit scrutiny.
But there is a picture here that is put into focus by the comments. For debilitating diseases wherein there are limited or no options, what is the cost that society is willing to pay absent strong findings of efficacy?
For example, in my field (cardiovascular), there are still quack docs that are prescribing "chelation therapy" to fight heart failure. It's a total scam. However, it is so easy to perform (pretty much an IV bag) and patients are so hopeful for a miracle cure that it becomes impossible to convince the public to steer clear*. It also invites quack doctors to prey on vulnerable patients. Aside from the obvious negative impact on patients, there are tangential consequences to society:
1) It diverts these proactive patients from entering into clinical trials where real answers are being sought.
2) It increases costs on society because the patients taking the quack treatment will be back for conventional (albeit poorly effective) treatment soon thereafter.
Of course, it's a patient's prerogative to seek whatever treatment they desire, and I can understand their viewpoint that society is imposing an unfair restriction on them.
* Whenever one of these dubious treatments shows high efficacy in an uncontrolled, preliminary trial, there is the sad chorus of people who claim that "the medical-scientific-charitable donation establishment doesn't want treatment X on the market because it will make them lose income / research funds / donations." It's a really sad commentary on our society. Let me tell you that as a researcher, if an amazing new treatment is found in my field, I can use that opening to write for more research funding within a matter of a couple of months. Same is true for pharmaceutical companies who jump into the field immediately. Furthermore, for philanthropic purposes, large leaps in patient treatment actually improve donations from the public. In other words, breakthroughs are a win-win-win-win situation for patients, researchers, companies and charitable societies. The conspiracy theories are nonsensical.
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The problem is though, that it hasn't been demonstrated that they actually have a blockage. Dr. Zamboni claimed that 100% of the MS patients he tested had this blockage, but other researchers have not been able to duplicate this result, or even demonstrate that MS patients are more likely to have the blockage than the general population. The other issue is that, as others have stated, the blockages that are being treated in others are generally arterial blockages, whereas the "Liberation" treatment involves veins.
I really do hope this turns out to be a legitimate treatment, I support further investigation, and if it does turn out to be legitimate then I'm all for the government funding it - but no novel treatment should ever be funded without proper clinical evidence (including some indication of who it would benefit and who it wouldn't), particularly a potentially risky and somewhat expensive treatment.
And the problem in Canada, is that MS patients are not even allowed to have an ultrasound to see if a blockage exists.
I don't think this procedure is being advertised as a so called "cure" for MS. Instead, it is advertised as being able to alleviate symptoms of MS for some, and significantly in some.
Again, I reiterate, why can anyone in Canada receive treatment for a blockage in their body, unless you have MS?
And even if the someone gets little relief from the procedure, why is the procedure not available to them? I can't see that it is in anyone's best interest to have a blockage in their body that gets ignored by the medical profession. This is no different than anyone with any other malady who is seeking treatment for that malady. Suppose someone has a very bad back, or is seeking treatment for cancer. Even if they get an operation or treatment, 100% assurance of success is never given. BUT, at least that patient has the option of choosing or rejecting procedures or treatments outlined to them.
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And even if the someone gets little relief from the procedure, why is the procedure not available to them? I can't see that it is in anyone's best interest to have a blockage in their body that gets ignored by the medical profession. This is no different than anyone with any other malady who is seeking treatment for that malady. Suppose someone has a very bad back, or is seeking treatment for cancer. Even if they get an operation or treatment, 100% assurance of success is never given. BUT, at least that patient has the option of choosing or rejecting procedures or treatments outlined to them.
The difference is that any cancer treatment that is funded by the health system will have undergone clinical trials to demonstrate that it has a net beneficial effect. Treatments that haven't gone through these clinical trials, no matter how promising, are not funded by the health system. That doesn't remove the option of choosing such a procedure (any more than it removes the option of going for the Liberation surgery), but the health system doesn't pay for it.
The difference is that any cancer treatment that is funded by the health system will have undergone clinical trials to demonstrate that it has a net beneficial effect. Treatments that haven't gone through these clinical trials, no matter how promising, are not funded by the health system. That doesn't remove the option of choosing such a procedure (any more than it removes the option of going for the Liberation surgery), but the health system doesn't pay for it.
My main issue is, some people suffering from MS have a blockage in a vein in their body, and they are refused treatment for that blockage....while anyone else with a blockage is given the option for treatment of that blockage.
I am not looking at this as a sure all treatment for the cure of MS. I am looking at this from the angle that some citizens in this country have blockages and are refused treatment for such...and as I said before, I do not think it is in anyone's best interest to have a blockage that goes untreated in their body.
And to make it worse, MS patients are not even afforded an ultrasound to check if a blockage exists.
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My main issue is, some people suffering from MS have a blockage in a vein in their body, and they are refused treatment for that blockage....while anyone else with a blockage is given the option for treatment of that blockage.
I am not looking at this as a sure all treatment for the cure of MS. I am looking at this from the angle that some citizens in this country have blockages and are refused treatment for such...and as I said before, I do not think it is in anyone's best interest to have a blockage that goes untreated in their body.
And to make it worse, MS patients are not even afforded an ultrasound to check if a blockage exists.
You are being way too simplistic about a very complicated issue. This is not a black or white concept (ie. blocked/unblocked), rather its a spectrum of venous narrowing and resultant flow dynamics +/- temperature changes/iron deposition/other theories. Furthermore, the clinical distinction between when normal becomes abnormal has yet to be legitimately determined, let alone whether any of this is relevant to MS. As an incidental radiologic finding, we see subjective narrowing of these vessels all time in normal people, should we start venoplastying them too to prevent the inevitable MS? What about all the other incidental vessels we see with apparent narrowing but no clinical findings? What about the normal physiologic changes we see in venous caliber depending on hydration status?
Funny how many posters cite angioplasty as a justification for treatment of MS: Did you know that cardiologists are only starting to realize now that visibly narrowed coronary arteries (which they used to angioplasty like mad on spect) does not necessarily correlate with a functional (ie. flow limiting) narrowing? They've been laying down stents for decades without questioning it, ironically predisposing vessels that did not need to be 'fixed', to future narrowing due to the very presence of that stent. This is ignoring the acute complications that can arise like dissected/ruptured vessels, strokes, ischemic limbs, compartment syndromes and death. When you have a hammer, everything looks like a nail.
MS is a drawn out disease progressing over decades, with a character that is known to vary in time and space. Yet the studies to date span only a relatively short term, and its much too early to say whether these 'improvements' are real, placebo, or just part of the expected course of the disease.
Last edited by NuclearFart; 09-27-2010 at 11:26 PM.
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My main beef is, why can anyone, except someone suffering from MS, get treatment for a blockage? Shouldn't everyone be eligible for treatment of a blockage in their body, no matter if you have MS or not?
MS patients are treated like second class citizens in this matter.
blockages are only treated if they cause a significant decrease in the diameter of a vessel leading to symptoms. studies have NOT definitively shown that these blockages cause any significant symptoms and therefore, having the government pay for a treatment that has not proven to work is not only wrong, but potentially dangerous. health canada holds medical care to an extremely high standard and is not in the business of paying for treatments with anecdotal evidence. if it is proven to work, the funding will come right away. there is a potential that they may be doing patients a big favor by not funding the treatment, as the procedure is not a walk in the park. that being said, hopefully it does show to be effective as it would be a major breakthrough in MS management.
MS Liberation treatment
