As has been pointed out repeatedly, there is no conspiracy to “see this disappear” - rather, to ensure that MS patients are not driven to abandon imperfect but proven therapies in favor of speculative surgery that has not been demonstrated to work apart from selective testimonials.
I previously linked to an article by a cardiologist expressing skepticism about the Zamboni hype. Here’s another by an internist who teaches and writes about science-based medicine. They are not neurologists or drug company executives. What are their “vested interests”? What is mine, for that matter (I’m a pathologist)? The common factor here is to advance the cause of science-based medicine and protect patients from premature hype.
Earlier you claimed that drug companies were attacking the Zamboni surgery as “snake oil”. Can we have a cite for that?
The accepted therapies for MS do have associated risks of toxicities and even death. The difference between them and Zamboni’s surgery is that the non-surgical therapies have demonstrated effectiveness.
There have been marked improvements in MS patients’ symptoms on drug therapy. and with no therapy at all. The former in some instances are likely due to placebo effect. The problem with relying on placebo effect is that it tends to be temporary and patients wind up having to try other things. Potentially bankrupting and/or harming oneself for the sake of placebo effect is not what medicine is, or should be about.
There’s no reason that “the pharmaceuticals” need to fund such studies. There are non-pharma research dollars available, and surgeons who support the idea of the procedure could participate in a properly blinded study.
We could go on all day exchanging charges about who has ill motives, but the bottom line should be, does the science justify putting people through this surgery (as opposed to “We can’t trust anyone, so let’s trust inherent untrustworthy testimonials”)?
Why thank you for mentioning that. What often happens in cases of media-ballyhooed cures that a very small but highly promising therapy is announced and appears to be the next big thing - until large, well-conducted trials demonstrate lack of efficacy and side effects. The Zamboni study, on the other hand, already raises considerable doubts about the surgery’s effectiveness. It would be very unusual for a large-scale blinded study to follow up in these circumstances and find that, whoa, the surgery actually works fabulously.
Still, it’s necessary to do the work, both for the potential and if it doesn’t pan out, to spare MS patients expensive, ineffective and potentially hazardous surgery.
Yes, definitely. The case I mentioned above where a radio talk show host hyped this particular treatment as being a miracle cure just drove people into a frenzy. We literally had calls from all over the world as people started talking about this. I had to explain to person after disappointed person that this study was not enrolling any longer, that the results of the early study had been overstated, that we or the company had not put this out as a promotion looking for participants, and that they could contact the company to get on a waiting list for future studies. I had people crying on the phone to me, some angry people telling me that I didn’t understand what it was like, I heard desperate people pledging that they would come to the US from Africa/India/South America for the period of time required for the study and follow-up if only they could have a chance to save their eyesight. I’m sure that many of them thought we were withholding a miracle cure from them for no good reason. All because the person on the radio told them this was doing wonderful things and saving people from going blind. This was several years ago and I still get a phone call about it once a month or so.
The MS societies themselves as their front men. They knew about this treatment even before it hit the presses and denied any knowledge of it.
Do they? My wife was promised that Copaxone would stop any lesions in the brain from developing. Yet, she has far more than the two lesions she started out with when she was diagnosed?
It is not the pharma companies that are funding it that is the issue, it is all the doctors who over the years have accepted funds from those companies to do research for them. They are not neutral in the eyes of patients.
People think there is a conspiracy because they want their damaged veins treated. They are told that they can’t have them treated because they have MS. Yet, if they are told that if they didn’t have MS they’d have them treated. That is where the conspiracy theory comes from.
I was going to mention the abuse that MS societies are taking over this issue; you’ve saved me the trouble. A cite for any such group denying knowledge of Zamboni’s procedure (for what motivation it’s hard to imagine)?
So no physician/scientist is acceptable to conduct research, in your view, because they must have accepted drug company research funding in the past (no matter what their field of interest is) and uniformly have bad intentions?
A cite for this claim?
I’m glad your wife sees improvement after surgery. Does this justify attacks on the integrity of MS activists and of science and medicine as a whole, including many who’ve worked throughout their careers fighting this disease?
The only cite I can provide is personal. The MS Society here in Alberta denied knowing of this treatment when we contacted them after the W5 episode in November. We find out later they had known of this treatment and Zamboni’s study, but never told anyone.
The other issue was that week my wife was in contact with a local clinic who said they would do the scans. Afterwords, they said they couldn’t do the scans because of a letter they had received from the MS Society saying they shouldn’t do them. Questions: Why would a private clinic listen to the MS Society? What reason would they have for saying this, though, if it wasn’t true? They could just as easily have said they weren’t prepared to do the testing at this time if they didn’t want to do it.
We have been unable to find a copy of this letter. My wife also informed the media regarding this and they were unable to find a copy, either. At this point we had no real stake in the issue other than wanting to find a place to do a scan to see if this issue had any merit.
Look at my posting history. I like getting into it on occasion (probably more than I should), but I’m usually in your corner in being skeptical. From my experiences in the last 7 months, I’m leaning the other way here.
But then it also could be that we are very close to the issue and are seeing things that aren’t there. “Never attribute to malice that which can be adequately explained by stupidity.” Or, just by people being people.
See below.
I’m of the opinion that most people who are doctors are nothing more than technicians like those who diagnose your car. Advanced mechanics, if you will. They try their best with what they are given.
On the other hand, if you remember the fellow from Australia who had this wild idea that ulcers could be cured using antibiotics. He was also ridiculed and eventually he infected and cured himself to support his position.
Who are the skeptics? I think I posted earlier a link to an article on some of the issues. Here it is again (warning pdf).
I am quite sure that most doctors are only trying to do the best for their patients. Yet, how can they not look at the results that patients are claiming and not be interested in checking these out for themselves?
See Steve Garvie walking again on his own after treatment.
A quick and dirty search comes up with this. The doctor admitted the patients as having blockages in their jugular veins. He performed the surgery. It was later determined that the patients had MS and because this procedure isn’t approved for MS patients he was essentially told to stop performing the surgery on future patients. So, a blocked vein in you and me would be treated as long as we don’t have MS. BC Doctor won’t be punished for doing fixing veins
The MS Societies in North Amercia just gave 2.4 million in research grants for CCSVI. Not one of them is actually treating patients. They are all to determine if there are blockages and if they mean anything to MS. Link. None of this research will actually do anything about any blockages, but only find out if there are any.
All this while people are already getting treatment outside North America. Not one of the research studies is looking at those people to see if there are any benefits from the actual surgery. It would seem very simple to do and would prove, or disprove, the theory rather easily. At least to this non-scientist. I’m sure some bright bulb could figure out how to do a study properly.
And you wonder why some MS patients are frustrated and pissed off? I think it would be obvious.
Speaking only for me and not trying to junior mod or anything - this is just an opinion. I enjoyed this thread much more when it was only about reporting on Uzi’s wife. I certainly understand there is room for debate, but couldn’t it be done in a thread all its own? I just want to hear about Uzi’s wife’s progress.
I’m sure everyone wishes Uzi’s wife well and are glad her symptoms have improved.
However, this thread has also become a forum for uncritically cheerleading the therapy, declaring that testimonials are sufficient for completely changing MS treatment, and denouncing caregivers and MS groups who’ve expressed doubts.
I don’t recall that he was “ridiculed”; rather that he and others did the research to support the theory, following which the link between Helicobacter pylori and ulcers (and malignancy in some cases as well) was accepted. On the other hand, tons of unconventional/alternative treatments breathlessly proposed as groundbreaking (and doubted by those nasty skeptics) have been debunked or never proven effective.
Dr. Embry, who wrote the letter, is probably not the most believable advocate for Zamboni. He is a PhD (in what field I haven’t been able to ascertain), has a son with MS, and touts a variety of proposed mechanisms and tests for MS, mainly a restricted diet based on the idea that MS is caused by a “leaky gut”. The only scientific publication I can find under his name in the PubMed literature database is a speculative paper suggesting that MS is linked with declining malaria rates in Italy, published in Medical Hypotheses (a poorly regarded journal that has been associated with many sorts of dubious woo). He is big on targeting and dismissing critics with accusations of conflicts of interest, though his letter reveals that 1) drug company associations involving some people were disclosed in the publication of their letter, not hidden, and 2) he provides no evidence that any of these connections has to do with competing MS therapies.
If “checking these out” means abandoning proven treatment and referring patients for potentially risky surgery without adequate evidence, that’s not “trying to do the best” for one’s patients.
Not so. A venous occlusion would be stented/surgically treated if it was determined to be producing significant signs/symptoms related to a vascular problem (and if non-surgical options weren’t indicated). If an MS patient had signs/symptoms of vascular insufficiency they’d be eligible for a surgical procedure.
A responsible and caring approach.
And that’s a central issue. Collecting testimonials, attempting to measure outcomes in a disease with as varied a natural course as MS and then coming to conclusions on the basis of this “evidence” is not how science works.
If I was afflicted with uncontrollable or poorly controlled MS I might be strongly tempted to be a guinea pig for Zamboni’s therapy. I hope I would also listen to those knowledgeable in the field of neurology and MS before subjecting myself to the procedure.
However, this thread has also become a forum for uncritically cheerleading the therapy, declaring that testimonials are sufficient for completely changing MS treatment, and denouncing caregivers and MS groups who’ve expressed doubts.
I think Embry is a geologist. Do you not see his point? The letter he wrote was in response to a letter debunking CCSVI. A letter that was published the day before the results from the Buffalo study, a study that supported a link between MS and blockages, came out. His question and many others was why they didn’t wait the day to publish their letter criticizing the link before the one study at the time was published? They knew about the study, everyone following this did. It seemed like a case of getting your message out first before actual science got its chance to speak on the matter. You have to take this stuff in context.
Stem cell therapy: Mortality in the 1-2% range (I’ve seen it listed as high as 5%). According to this article should only be considered as a rescue therapy at this point. Tysabri: chance of getting PML 1/1200. I should also note this article talks about the chance of a blood clot by using stents. A concern that both my wife and I have.
A link to the most popular drugs for MS. Some of these drugs are deadly.
The patients had blocked veins in their neck. They also had MS. The doctor had a reason for the surgery and was told not to do it again. Unless you think that if your jugular vein is blocked that is a good thing, or only should be treated if you show signs of having an issue because of it (not related to MS, it seems).
You would be tempted. And you’d probably do it if you had the money. Your only other choice is to watch yourself to slowly degenerate into immobility and death. The drugs can only delay that descent, if that. And if you are lying in your bed unable to move, I guess you could try stem cell replacement therapy as listed above, or you could try a simple angioplasty, based upon preliminary studies and anecdotal evidence, if it was determined you had a blocked vein. A responsible doctor should recommend what? Because I seem to remember my wife’s neurologist recommending Copaxone when it first came out on not much more evidence than this. She was actually part of a study, iirc.
I understand the issues here. For a long time it has been claimed that MS is an immunological disease and doctors and researchers have been developing treatments for that. Now it is suggested that the root cause is a venous issue and that the immune reaction is just a symptom of that. A lot of people don’t like it when you change their paradigm so much.
What I know is this: When they opened the first balloon in my wife’s neck she asked if they had done something. The doctor asked why? Note that she didn’t know the doctor had opened the balloon. She said she could feel the two fingers on her hand that she hadn’t felt in years. This happened right in the surgery and was not anticipated. I’d sure like someone to tell me how this can be a placebo affect. Not expected and not anticipated. Nor was it the result of her Copaxone kicking in and ‘curing’ her. Unless you can suggest with a straight face that it did so at that exact moment.
Now it could be suggested that the surgery triggered a remission (even though she wasn’t having an attack or had one recently). If the surgery can trigger remissions, and assuming that is all it does, then that alone makes it a candidate to replace all current drug treatments at least for those it works on.
Khadaji, I once had a conversation with another long time poster where he said, essentially, that 1+1=2 could only be proven by a philosophical approach. Unless you could prove it logically, it wasn’t proven. My example, iirc, was that if I had one apple and added another apple it would always be two apples. Nope, not good enough.
This is similar. I could show any number of people who have benefited from this surgery. But because some don’t benefit (although most do to some extent) and until the people they trust actually admit they were wrong or the rest of the world moves past them, then this won’t become accepted by doctors.
I have yet to have anyone explain my wife’s recovery. It is anecdotal and so doesn’t count as evidence in some people’s minds. And yet it is evidence and enough of it equals validity of the theory. As I’ve said before, get enough of the people out of their wheel chairs and marching on Parliament and things will change.
That will happen only because while some play research scientist, others are actually doing the surgery. It seems people are trying to lock the barn door after the horse is gone. Too late. People are getting better because they have spent large amounts of money to go to other places around the world. They could have spent it closer to home and had better care because of it. We have to wait for our people to tell us there are actual blockages first, though. I’ve got the venogram showing my wife’s that I could look at right now if I wanted to. Not evidence, though. Must not be true. Again, I wonder why they can’t take that study it?
I’ve read the letter addressing the CCSVI theory (which Embry objects to). It is not a “debunking”, but rather discusses the issue in relation to medical physiology and the known pathogenesis of M.S., raising numerous questions about how Zamboni’s theory could fit in with what we already know about M.S. and venous insufficiency. One intriguing point relates to the fact that cerebral venous insufficiency due to malformed veins would be expected to increasingly manifest as patients age, but the incidence of M.S. actually declines with age. And there’s plenty more reason to question the venous insufficiency theory of M.S. In part:
“Venous occlusion secondary to flow disturbances is characterized by hemorrhagic and ischemic infarctions, and edema associated with increased intracranial pressure.[26] These features are not typically seen in the brain or spinal cord of MS patients. Furthermore, the widespread primary demyelination, characteristic for both white and gray matter lesions in MS patients,[27] is not present in conditions of acute or chronic venous brain disease. However, more subtle chronic alterations of venous blood flow could theoretically augment tissue injury in MS. A disturbance of venous outflow may increase pressure within the venous drainage pathways. This is likely to facilitate the exit of inflammatory cells from the venous circulation to gain entry into the CNS, and amplify perivenous inflammation. However, it was recently shown that in the late stages of MS, inflammation may die out and decline to levels seen in age-matched controls.[28] This would not be the case if impaired venous drainage was the primary pathology in MS, because it would be expected to increase with time and age…”
The letter’s authors call for robust debate and further investigation, not abandonment of Zamboni’s idea, with the realization that premature adoption of his procedure endangers patients.
“It is critical not to compromise patient safety during the conduct of these research endeavors. Anecdotal reports have indicated that endovascular procedures including placement of stents in the IJV have been carried out in MS patients as a clinical treatment procedure, and in some cases have led to serious injury. Potentially fatal outcomes including migration of the venous stent into the heart and perforation of the ascending aorta are uncommon but known complications of venous stent insertions.”
I’d link to the entire article but I don’t think it’s available online to readers who don’t have access via medical libraries.
As to Helicobacter and its role in ulcers, there remains a lack of evidence (beyond folklore) that the scientists who were successful in getting the infection theory recognized were “ridiculed” or persecuted in attempts to block their research on behalf of the Antacid Lobby, or whatever. They did the necessary work, and medicine accepted it. Countless other alternative medical theories have fallen by the wayside because their proponents had nothing more to offer than testimonials and conspiracy theories.
It would instructive for those who don’t know the history of M.S. therapies to look at the vast armentarium of unproven treatments and quackery that have been used to exploit M.S. patients. It’s little wonder that physicians, scientists and M.S. patient groups are wary about wholeheartedly embracing the latest Big Thing.
I believe the rest of your response has been covered in previous replies.
Please explain the actual benefits that people have experienced by receiving this treatment. Compare it to those on the site you linked to. You see no difference? The claims of patients who say they have improved because of being treated carry no weight?
By the time the studies that are being done in North America are completed there will be thousands of people who will have had the surgery done, maybe tens of thousands. For some reason people who have had the surgery invariably claim that they have seen improvement. How many of these people will it take before it is declared fact, rather than theory, and you can get the treatment locally? Should we say never? Or is there another number that makes sense?
When scientific review of the evidence indicates that the treatment is effective, then it becomes more appropriate to accept the treatment as established therapy, not before.
Hey, I was ready to jump on the bandwagon for arachidonic acid helping Cystic Fibrosis patients like my daughter, and tempted to give her high doses of the stuff. We waited for more evidence to be in, and when it showed that despite early hope and testimonials from many, it didn’t help patients, we were glad to not have gone that route.
We did try the high dose ibuprofen treatments when she was younger. We’re not sure if it helped, evidence indicates it may benefit some. Now it’s possible her hearing loss is due to that early treatment.
I’ve learned not to get overly optimistic, and to appreciate that there are unintended consequences that may not be apparent for years or decades.
I’m watching this debate with great interest; I can definitely see both sides of this question, and my own experiences with the same medical field that Uzi and his wife deal with here in Calgary has caused my own crisis of faith with the medical profession and their assembly line approach to healthcare - it works more or less fine as long as you have a normal condition that responds to normal treatment. Fall outside those guidelines of Best Practice and you’re in the hinterlands (where all of this is taking place). Patients are much more comfortable out in the hinterlands than doctors are.
No. The point is that all of the methods listed at that site, ALL OF THEM, had testimonials from patients who benifited from the treatment. My sister has MS and is taking a cobra venom extract that she buys over the internet from out of the country. She’s looking for a source that will sell it for less than $1,000 a bottle. She says that it improves her steadiness when she stands enough to allow her to put on her own pants.
I’m not going to encourage her to stop taking it, largely because she can afford to pay for it out of pocket and because MS truly sucks. Neither of us pretend that it’s a proven treatement and neither of us would want it to become one unless properly done studies proved it. Right now she knows that she may be paying for placebo effect or happenstance, but it’s worth it to her.
And how many of them have preliminary studies that support the findings? Zamboni did research to prove his theory. Others have supported those findings with research of their own. The doctor who did the surgery on my wife actually showed us the blockage in her neck. I saw the blood reflux back into her head from mid neck. Anyone out there claiming that this is a good thing for your veins to act like arteries? She had a blockage (3 actually). Now she doesn’t. Now she is significantly better and it started to happen as soon as the surgery. Study of one aligns with the theory. What more do you want me to say?
And my sister got better as soon as she took the cobra venom extract. Does that prove to you that it works? That it should be given to all MS patients and their insurance should pay for it? Do you think it’s a coincidence that she got better right then?
And all of those other people who got better with all of those other procedures and medications - if you think it’s an insult that someone might think that your wife’s improvement might be a coincidence, or might not apply to all MS sufferers, how can you insult all the people who got better after all those other treatments? Do you deny that they got better? Do you think they’re all lying?
If your wife had blockages and they’re fixed, that sounds like a good thing. I’m not going to pretend that I have enough medical knowledge to have an opinion about that. I’m also not going to say that you shouldn’t have had the procedure done. I just don’t want procedures added to the medical repertoire before they’re fully proven. I can sympathize with your impatience with the time it takes to prove a procedure, but I’d be scared shitless of a medical system that added procedures after small “preliminary studies”. The time it takes to prove a procedure is the time it takes. The only way to hurry it even a little is to raise money and fund the studies.
All of those unproven procedures have good looking case studies on file somewhere and I’d bet most of them have preliminary studies of some sort or other, too. The blockage procedure is probably competing for research dollars with some of them.
I hope your wife continues to improve. I’m rooting for my sister, too. She’s going into the summer, and that’s a bad time for her. For some reason, heat makes her symptoms worse. She’s better in the winter.
I hope they find a cure soon. I know that no matter when it comes, it won’t be soon enough. Soon enough was gone before I was born, before my grandmother was born. MS truly sucks and I don’t really care what cure or treatment they finally find as long as it’s a proven and effective one. If your wife was on the leading edge of what turns out to be a cure, good on her. Good on you and good on the doctor. But we can’t lower the bar for just one treatment. When you lower the bar, all the half-proven treatments get in. Then you’re doing research on people while calling it treatment.
If you go to this commercial site you’ll find stories of handpicked preliminary research that make it sound as though a cure is just over the horizon - at one of their foreign clinics (treatment not offered in the U.S. yet because of stodgy regulations, obstructing M.S. societies, pharma-controlled doctors, what have you). Check out the online offerings - go to China (only $30,000 for a treatment there), do medical tourism to Costa Rica - someone will be happy to [del]exploit[/del] cater to one’s need for a cure.
Except that despite the potential in stem cell therapy for neurodegenerative diseases, a safe and effective regimen that can be approved for widespread use is quite aways off.
That doesn’t mean that research into this and other new therapies for M.S. (including Dr. Zamboni’s procedure) should not occur. But there is ample reason for physicians, patients and disease societies not to throw away current modes of treatment (which have scientific and clinical backing) in order to jump on some hot new treatment bandwagon prematurely.
I have been taking Ampyra for around 3 weeks now (along with Rebif, which I started two weeks later). First impressions - I generally have 3-4 times the number of steps I used to beable to take without a cane and/or resting for an hour, and have only once been to exhausted to take a step. So, I’m very happy so far. The problems I have are 1) the fatigue comes with much less warning or predictability now, so I have been “caught” needing help more unexpectedly; and 2) my sleep has been erratic and my insomnia has increased (but there could be other explanations for that).
I linked to actual research being done on stem cells earlier. Are you calling the research quackery or the theories? That someone comes along and abuses it for their own purposes makes it invalid?
My fear is that some of these clinics overseas will not be safe for the people going to them. Some will be placing stents and not have the expertise to do so. This is why we want the research and treatment done in Canada to avoid the charlatans. CCSVI is a recognized congenital disease. The only debate should be if we should treat it. Let me ask, if you had a blocked vein would you want it treated? If it is no big deal, can I come over and clamp off one of your veins so we can see the long term results?
Veins get blocked often. In fact, many diseases are treated by blocking off veins. Varicose vein therapy is just that, sclerosing them so they close off. other veins are plentiful, the blood gets re-routed.
Blocked veins tend to be a problem when the blockage is in a critical vein, such as the vena cava or other larger veins, or critically located veins, such as those larger ones inside the brain. In those locations, unblocking them can be critical. Or if the blockage is a blood clot at risk for breaking off and travelling to the lung where it can kill a person.
But most blocked veins don’t merit treatment just because they’re blocked. It’s not nearly as critical as for arteries, where blockages can cause tissue death downstream from the blockages.