MS Liberation treatment

[joe_mullen]

Originally Posted by redforever

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.

people are absolutely allowed to go for neck ultrasounds. there are a number of clinics in calgary that have updated the training of their ultrasound technicians with this in mind. however, it is up to the ordering physician in combination with the patient to determine whether a test is necessary and of potential benefit, especially in the absence of any established benefit from the screening test. while having a neck ultrasound may seem like a completely benign test (and in most instances it is), it can also reveal insignificant incidental findings that complicate the picture, or even worse, lead to unnecessary painful/expensive/dangerous procedures that will not provide any benefit. at this time, the data is not likely sufficient to merit screening neck ultrasounds in patients with MS. once it does, you will be sure that patients will get them much more frequently. but that being said, these ultrasounds are definitely available, but at this time not shown to be of any benefit.

what i describe above is the same reason for why full body mri screening isn't suggested, or even more "benign" testing such a self breast exam in women.

[redforever]

I am not trumpeting this liberation treatment as a cure all for MS. And I fully realize that it is a very complicated disease, and is neurological in nature.

Whether the stents or angioplasty will end up giving any relief, partial relief, lasting relief, I do not know. But these people are plain outright told that it is not available for them here in Canada. Even that much I could accept and I think they could accept, but why are they not even afforded an ultrasound to see if they even have blockage? so they can then make choices or arrangements to try this treatment elsewhere? Can we not give even that much assistance to these people?

Our friend with MS went from being Chief Operating Officer of a major oil company to being wheelchair bound and having lymphoma, which by the way is 99% surely the result of the treatment he has been receiving for MS which has not worked or given him relief.

And now he can not even get a doctor to refer him to get an ultrasound? That is asking too much?

[joe_mullen]

Originally Posted by redforever

I am not trumpeting this liberation treatment as a cure all for MS. And I fully realize that it is a very complicated disease, and is neurological in nature.

Whether the stents or angioplasty will end up giving any relief, partial relief, lasting relief, I do not know. But these people are plain outright told that it is not available for them here in Canada. Even that much I could accept and I think they could accept, but why are they not even afforded an ultrasound to see if they even have blockage? so they can then make choices or arrangements to try this treatment elsewhere? Can we not give even that much assistance to these people?

Our friend with MS went from being Chief Operating Officer of a major oil company to being wheelchair bound and having lymphoma, which by the way is 99% surely the result of the treatment he has been receiving for MS which has not worked or given him relief.

And now he can not even get a doctor to refer him to get an ultrasound? That is asking too much?

the ultrasounds are available to one and all. like i stated, the decision to get one done should be a joint one between the patient and the physician. however, if the physician is going "by the book", there is no indication at this time to have the test done, and therefore, the ultrasound is not ordered. based on current evidence, there is likely more harm that can result from the ultrasound then good. hopefully studies reveal that this treatment is beneficial, but like stated previously, the canadian health care system holds itself to an extremely high standard, and will not fund it until it is shown to be helpful.

in the meantime, i wonder if these ultrasounds are available privately, just as MRIs and CTs are.

[redforever]

Originally Posted by joe_mullen

the ultrasounds are available to one and all. like i stated, the decision to get one done should be a joint one between the patient and the physician. however, if the physician is going "by the book", there is no indication at this time to have the test done, and therefore, the ultrasound is not ordered. based on current evidence, there is likely more harm that can result from the ultrasound then good. hopefully studies reveal that this treatment is beneficial, but like stated previously, the canadian health care system holds itself to an extremely high standard, and will not fund it until it is shown to be helpful.

in the meantime, i wonder if these ultrasounds are available privately, just as MRIs and CTs are.

Sure they are available privately.

Do you know what MS patients have already gone through? Most of them have quit their jobs a long time ago, in order to qualify for disability insurance, and that is only if the organization they worked for offered that. For those without that insurance, many live a very basic day to day life. Their life is not easy, and it deteriorates daily.

And for many, at the point like where our friend is at, they give up when they are told no repeatedly. It is simply too hard for them to keep fighting for crumbs, it is too expensive for them to seek treatment elsewhere, and even if they can afford it, many are at the point in their lives whereby travel is simply too hard because of their existing conditions.

[joe_mullen]

Originally Posted by redforever

Sure they are available privately.

Do you know what MS patients have already gone through? Most of them have quit their jobs a long time ago, in order to qualify for disability insurance, and that is only if the organization they worked for offered that. For those without that insurance, many live a very basic day to day life. Their life is not easy, and it deteriorates daily.

And for many, at the point like where our friend is at, they give up when they are told no repeatedly. It is simply too hard for them to keep fighting for crumbs, it is too expensive for them to seek treatment elsewhere, and even if they can afford it, many are at the point in their lives whereby travel is simply too hard because of their existing conditions.

sadly, i am quite aware what MS patients go through, it is a devastating condition. however, that does not change the fact that the standard of care is being provided. as i stated, at this point there is no proven benefit to ultrasound screening. it may sound like a simple, harmless test, but in the absence of documented benefit from screening, it can actually have harmful effects. like i stated previously, "harmless" tests, as simple as the self breast screening exam, are statistically more harmful than beneficial, therefore, they are not suggested. until this is proven otherwise with screening neck ultrasounds, there is no reason that they should be funded by health canada. while empathy is very important in medicine, it should not cloud the judgement of the providing physician, as cold-hearted as it may sometimes seem.

[mykalberta]

No, the government should not fund a $25K treatment that simply improves the quality of life.

[guzzy]

Originally Posted by mykalberta

No, the government should not fund a $25K treatment that simply improves the quality of life.

Wow...heartless much?

You obviously don't know anyone suffering from this disease.

The govt pays for transexuals to have sex changes to improve their quality of life and that costs over $500,000.

This operation only costs a few thousand dollars. Medicals outfits across the world are charging upwards of $30000 because it is a huge profit center right now.

So maybe you should turn your simple mind off of cruise control and have some empathy towards the thousands of sufferers whose life can drastically improve. Towards those who are in wheelchairs that can regain at least some mobility. For those with non functioning bladders who can now get out of adult diapers. For those who haven't slept through a night because of the pain they face, who can now get a full 8 hours sleep. All of this for a few thousand dollars....n ot $25000

[guzzy]

One of the greatest problems with this treatment is it completely re-writes how north american modern medicine and the MS society view this disease. These organizations cannot simply ignore everything they thought they knew of this of this disease.

For years it has been treated as a neurological disease and now they are discovering that it may be a circulatory disease that causes neurological issues.

The biggest problem is health care is run by drug companies in North America (yes...canada too) and when a procedure comes around that alleviates symptoms and reduces drug dependencies, of course the govt is going to steer away from it.

The MS society is as guilty as the govt here. They are also sponsored and kept afloat by drug company donations.

THis year if you donate to the MS society make sure you write 'For CCVSI only". We don't know if that helps yet but it is a step for the society.

Both North American Medical societies and the MS society need to remove their head from their asses and start helping people.

[MarchHare]

Originally Posted by mykalberta

No, the government should not fund a $25K treatment that simply improves the quality of life.

I wouldn't go that far. If Dr. Zamboni's procedure undergoes the rigours of proper clinical trials and is found to be the "miracle treatment" many are hoping it is, I'm all for the government funding it. Until it is properly evaluated by independant physicians, though, I see it as no different than other non-scientific "alternative treatments" like ingesting shark fins to cure cancer.

[Tron_fdc]

My mom has MS, and underwent the procedure in Poland about 2 months ago.

I feel the same way then that I do now. If it stops the progression, and increases her quality of life even somewhat, it's worth it.

So far it's been very positive for her. Although her case was mild (affected her speech, and the left side of her body was numb), in both cases I have seen a great improvement. The biggest thing for me though, has been her attitude.

Sure, there are possible side effects, and I'm far from a physician, but the improvement I have seen firsthand in her attitude alone made it worth every penny. I'm sure you can call it a placebo, and people can debate all day if it's scientific, but as with all things in life if there comes a point where even the mental aspect can show an improvement, it outweighed her risk.

It's easy for arm chair critics with no personal connection to this disease sit and criticize it, but for me, especially after seeing the results, it was a no brainer.

[Tron_fdc]

All in about $15 000.00

That's the thing though, it's a pretty non invasive procedure, and the actual cost is nowhere near that. Clinics are charging boatloads of cash right now because the government won't subsidize it here.

Again, I'm no physician, but from what she described it wouldn't cost much more than a couple grand to do here. Over the long run, that's probably a lot less than the meds that she was already on.

[Pinner]

My opinion is, if you want the procedure before it has been clinically tested and deemed safe and worthy of public funding, go right ahead, nobody is stopping you and it doesn't cost much.

[Ducay]

As someone who knows a few people with MS (one has undergone this treatment), I can see the issue from a few sides.

a) Its a potential large step in the treatment in a good portion of MS patients.

b) Not enough reserach has been done on it to date, people are just jumping on the bandwagon wayyyyyy too quickly. But again, I know what the disease can do to you, so I don't blame people for trying anything.

c) Given b) there are WAYYYYYYYYYYYYYYYYYYY too many unqualified places offering this surgery now. I think a lot of people are/will be scammed and not recieve the correct treatment.
Zamboni comes up with his treatment and then all of the sudden there are 1000+ offices offering the treatment within a year? Sounds like a recipe for disaster. I just hope the people that are seeking this treatment make sure they're going through "reliable" means and medical establishment. "El Hopitalo del MS con Taco del Costa Rica" does not sound like somewhere that is known for neurological and vascular research.....

[Flames Fan, Ph.D.]

Originally Posted by guzzy

One of the greatest problems with this treatment is it completely re-writes how north american modern medicine and the MS society view this disease. These organizations cannot simply ignore everything they thought they knew of this of this disease.

For years it has been treated as a neurological disease and now they are discovering that it may be a circulatory disease that causes neurological issues.

The biggest problem is health care is run by drug companies in North America (yes...canada too) and when a procedure comes around that alleviates symptoms and reduces drug dependencies, of course the govt is going to steer away from it.

The MS society is as guilty as the govt here. They are also sponsored and kept afloat by drug company donations.

THis year if you donate to the MS society make sure you write 'For CCVSI only". We don't know if that helps yet but it is a step for the society.

Both North American Medical societies and the MS society need to remove their head from their asses and start helping people.

Ugh.

[puckluck]

Originally Posted by Flames Fan, Ph.D.

Ugh.

Don't know what you are ughing about. Everything he said was dead on.

[Ducay]

Originally Posted by fotze

You must be a part of the MS funding gravy train that is opposed to helping people get better.

Exactly. That Terry Fax guy, or whatever his name is, was just a shill for the big Cancer industry.

[flamesfever]

l think we have a special situation taking place. As the people going abroad to have the procedure accelerates, it is imperative that we get some answers as soon as possible.

Therefore, I think the Provincial and Federal Governments should reconsider their approach to the matter, and provide public money to fund clinical trials. I think the Premier of Saskatchewan, Brad Wall, should be applauded for taking the first step in this regard.

[Tron_fdc]

Not only that, if there are a pile of bush league clinics doing it (which I'm sure there is/will be) the complications are going to manifest themselves here in Canada, costing our health system at home.

There's no reason why clinical trials in Canada shouldn't go ahead on this, in a controlled environment.

[Flames Fan, Ph.D.]

Originally Posted by fotze

You must be a part of the MS funding gravy train that is opposed to helping people get better.

Actually, my day to day work is more focused on prolonging the pain and suffering of people with cardiovascular disease. Once I'm through with them, then I can use my funding to thwart MS patients.

Or so say my captors at Pfizer

[afc wimbledon]

My problem with this is what we read here, 'they seem better', 'they feel better' but nothing more measurable then that. Almost anything you believe in (or desperatly want to believe in) can do that.