HELLO PEOPLE! I posted something similar the other day, but i feel like this is a WAY better article!
I'm so excited about this and think this just might be one of the final peices to the MS puzzle!!!
Hope you enjoy!
This is a Dr or someone writting this
CCSVI – A Huge Breakthrough in MS
Last modified: 09.02.2010 - 22:51 CET Created: 03.11.2009 - simplex
Written by Ashton Embry PhD for New Pathways Magazine. Nº 57. September/October 2009
In August, I received a message asking me what I thought about CCSVI in multiple sclerosis. I had the same reaction most of you did when you read the title of this article – “What the hell is CCSVI?” A Google search told me it stood for “chronic cerebrospinal venous insufficiency” and a PubMed search led me to a handful of papers on CCSVI, all authored by an Italian vascular researcher/surgeon named Paolo Zamboni.
The papers provided solid and mind-expanding evidence that an entirely new disease process was part of MS. It soon became clear that the concept of CCVSI had the potential to completely change how we saw MS and how to treat it.
The Italian researchers discovered that, in persons with multiple sclerosis, the veins which acted as the main drainage pathways for blood flowing from the brain back to the heart were substantially narrowed and even blocked. These included the jugular veins, veins along the spinal column, and other veins I had not heard of before such as the azygous vein.
The researchers had never seen these problems in anyone before. Their equipment allowed them to study the blood flow in the veins and to also take pictures of the veins. They found that all the persons with MS they examined had impaired venous drainage from the brain and that such a problem caused the phenomenon of “reflux”. This means the venous blood would flow back toward the brain as it established new pathways around the blocked and narrowed veins. They labeled this compromised venous drainage as CCSVI.
Improper venous drainage is well known in the lower torso of many people (e.g. varicose veins, etc). In some cases, it has been demonstrated that poor venous flow in the lower body can result in iron deposition and associated inflammation. Furthermore, sclerosis and degenerative lesions can occur with the inflammation.
Knowing the problems that poor venous drainage can cause in the lower torso, Zamboni and his co-authors offered the reasonable interpretation that the reflux action of the blood flow into the veins of the brain resulted in iron deposition and inflammation of the blood-brain barrier (BBB). Notably iron deposits have long been documented in MS lesions and it is well known that every MS lesion forms symmetrically around a vein. Such characteristics of MS lesions have never been satisfactorily explained before the Zamboni discoveries.
In the MS literature, there are two opposing hypotheses for how MS autoimmunity begins. The most popular one is that myelin-sensitive T cells are activated through molecular mimicry by a childhood virus such as EBV. The myelin-sensitive T cells then cross the BBB and lead an autoimmune attack on myelin.
The other hypothesis is that the initial event in the MS disease process is a breech of the BBB and the consequent exposure of the central nervous system to the immune system. This uncovering of previously hidden antigens not seen before by the immune system leads to an autoimmune attack on myelin.
With the work of Dr Zamboni, it now appears that the second hypothesis, the breech of the BBB due to impaired venous drainage, is the best explanation for the initiation of MS autoimmunity. In support of this, the researchers found that, of the 109 persons with MS studied, every last one of them had impaired venous drainage. Furthermore, of the 177 control subjects, a group that included persons with other neurological diseases and healthy people of various ages, not a single one had impaired venous drainage from the brain. Such a 100% separation of persons with MS from controls on the basis of impaired venous drainage leaves little doubt that such a phenomenon is very important in the MS disease process.
Another important observation made by Zamboni's team is that the pattern of reflux, that is, the specific pathway the blood uses to flow back to the brain, showed a strong correlation to the type of MS. Persons with PPMS had a different reflux pattern that those with RRMS and SPMS. Furthermore, the PPMS reflux pattern provided a good explanation why this form of MS is more aggressive and problematic.
The other convincing data that demonstrates that CCSVI is a key part of MS are the results from the use of a treatment which relieves the venous drainage problems. This treatment is called „the liberation procedure”. The problematic veins are first identified by venography. Then, balloon angioplasty is used to open up the problematic veins and, in some cases, stents are inserted in non- responding sections. The procedure is relatively non-invasive and is done in day hospital under local anesthesia. Access to the veins is through the left femoral vein in the thigh. Total time in the hospital is usually less than 6 hours and the subject has a compression dressing on for 24 hours.
Dr Zamboni has described the results of the use of the liberation procedure on 51 patients with relapsing-remitting MS. Eighteen of the subjects were treated in emergency with an acute attack and all of them had their symptoms completely resolved within a few hours to a few days. The other subjects had a greatly reduced yearly attack rate and, notably, the only ones experiencing an attack following the procedure were those who had a recurrence of the impaired venous drainage problems. The subjects also reported a dramatic improvement in chronic fatigue. In summary, it would appear that the relief of venous drainage problems results in major improvements of MS symptoms. This is further evidence of the major role that CCSVI plays in MS.
Finally the researchers noted that there was no difference in the severity of venous drainage problems between those using an MS drug and those not on a drug.
Last modified: 09.02.2010 - 22:51 CET Created: 03.11.2009 - simplex
Written by Ashton Embry PhD for New Pathways Magazine. Nº 57. September/October 2009
Given that CCSVI explains why PPMS differs from RRMS, as well as the occurrence of previously inexplicable features of MS lesions (e.g. venocentricity, iron deposits), CCSVI becomes a very compelling explanation for the initiation of CNS autoimmunity which drives MS. Further research is needed to confirm this.
Perhaps the most important question that remains is “what is the ultimate cause of the venous drainage problems?” Zamboni and colleagues did not offer any explanations/speculations on this. Hopefully, this question will be the subject of an intensive research effort. It is worth noting that, given adequate vitamin D in childhood prevents MS in most cases, vitamin D supply must have a substantial effect on the venous drainage system.
This new understanding of the MS disease process makes the use of the recommended nutritional strategies even more imperative. These strategies enhance blood flow, strengthen the BBB, counteract autoimmune reactions and quite possibly improve venous drainage from the brain. Overall, the Zamboni work provides further insight into why nutritional strategies work so well for many people.
In answer to the question in the title of this article, I am convinced that CCSVI is a huge breakthrough for MS. Correction of this problem with a relatively simple procedure may well turn out to be a very effective, long lasting, drug- free treatment for MS at the time of diagnosis. However, a great deal of research and clinical testing will have to happen before CCSVI is widely accepted as a key part of MS and the liberation procedure becomes standard procedure. In the past, non-drug treatments for MS have been marginalized, mainly for financial reasons. I predict it will be a long, hard fight to get the treatment of CCSVI from the laboratory to the clinic.
It is so tempting to be excited, but the evidence if far from convincing. There is still a lot of work to be done in this field. And if I understand this correctly, even Dr. Zamboni himself is not making claims that CCSVI is the CURE for MS.
I also think I read that his wife, even though she has improved since the procedure, is still taking her DMD as prescribed.
The author of the article you quote is well known for his diet and nutrition cure of MS, which according to his reports is what cured his son. He steps into the larger unknown with his thoughts here - they are largely unsubstantiated. Just one example " given adequate vitamin D in childhood prevents MS in most cases, vitamin D supply must have a substantial effect on the venous drainage system." What does he base this on? We know there MIGHT be a link between D and MS, but that has been studied intensively and still not proven.
As for the conspiracy theory - as much as I know the dark side of human nature, I absolutely refuse to believe that a cure for MS is being blocked by pharmaceutical companies that arer more worried about their profits.
It looks like CCSVI plays into the larger MS picture, somehow. How it fits, though is still a big question. In the meantime while this is all playing out, everyone should stay the course with the treatment they are on. The DMDs are our best proven treatment as of now.
I think they've done further research on the impaired venous reflux phenomenon, and found it wasn't a 100% division between MS patients and controls. Some MS patients do not have blocked neck veins. This isn't to say that that's not a factor, just that it looks like there's more to it than just CCSVI.
CCSVI is still in the hypothesis stage. That means, they don't know how much or why but are tantalized into putting forth theories. This has NOT by any mean been shown to be a cure of any sort. In fact, the "treatments" they have tried have not lasted long, per Dr. Zamboni's own reports.
The much larger study out of Buffalo did NOT in any way support Zamoboni's finding that 100% of MSers suffer from CCSVI. Indeed, they found only 55% had such stricture or venous insufficiency and that it was found in 25% of controls. This is a FAR cry from 100% and 0%. 55% is hardly even very exciting, in my mind. Claiming that those 55% might have been misdiagnosed is silly. As I understood it, the researchers in Buffalo reviewed the patient's file to see that they were likely to have MS as their correct diagnosis. Overall, looking at MS Clinics across the country, the incidence of misdiagnosis is about 10%. The additional review of the patient's files would have likely lowered the chance of misdiagnosis.
It is far too early to be jumping on this as the answer to the problem of effective treatment for MS. Our current knowledge of the treatment for CCSVI shows a couple things. Use of balloon angioplasty appears to lose its effectiveness within months in a large number of people. This is a highly invasive procedure and not one you would want to have regularly.
The use of a stent is not at all ready for prime time. At Stanford the stents were associated with some unacceptable side effects, including one instance of the migration of the stent into the heart which necessitated immediate open heart surgery. Veins are highly stretchable compared to arteries. They swell and contract depending on the volume of blood at any one time. Doctors cannot just transfer the technology of arterial stents to the veins.
I also do not believe that there is any conspiracy at play here, nor is there likely to be. The claim that the medical profession with or without the help of Big Pharma has hidden the truth of cures for disease from the public is an old one dating back half a century.
I think the whole topic is being overblown by careless science media who fail to report the whole story and being picked up and prematurely "hailed" by desperate people hoping for a cure. . We are pretty far (years) from showing 1) that CCSVI is truly a major player in MS, 2) what role it plays, causative or resultant, 3) that relief of the problem can truly affect the course of the disease, 4) knowing what treatments are most effective and most safe, 5) knowing how long those treatments will have a lasting effect, 6) Knowing how to screen for the problem and 7) knowing if the problem can be prevented by any means.
Zamboni's studies were quite flawed and I doubt that their results will be replicated when the science method is applied rigorously. Still it needs to be done - and as quickly as possible. That is how we find out stuff and separate the real stuff from the promising, but otherwise unhelpful things.
I am not a nay-sayer, just very doubtful about all of this. As I said in my journal, some months ago, there are a lot of things we DO know about MS and my mind cannot put CCSVI into line with those things. I now add onto that doubt the underwhelming results by the group in Buffalo, despite their premature and overly excited press release the day before the intial finding were revealed.
I do not see that CCSVI is a huge breakthrough.....yet. It's just too early.
well i sure hope they fine tune it and its the cure!! but.....
i read the other day something about oxygen- they put you in a tube and decompress you - and there was some excitement about it- being good
for us the oxygen helps with our cells- blood everything! but we'l see
Hi, thanks for your post! I will be looking forward to hearing his results in the future. Best of luck to him and i hope it will be a future cure. Thanks...oh and p.s can you come back to this post to let me know the results as i don't really look on the forum all that much :)
It is interesting reading articles that is written about CCSVI by different authors. Each has their own interpretation. That is why I appreciate the internet. We can draw our own conclusions.
I believe that CCSVI will prove to be beneficial in understanding MS. Research into MS has become stagnant. CCSVI may not prove out to be the end-all, but I think it will reinvigorate looking into an area that needs to be explored. I've long thought that MS needs to be looked at outside the box which may prove that what we think we know about MS may be incorrect. Maybe not all aspects, but perhaps a good many of them.
Really, there is very little known about MS with any level of certainty. I'm not convinced it is an autoimmune reaction at all.
healthnut - I wish your brother luck. Please let us know how he does.
Here is another query I have....
(Hypothetically) .....Say they are right about the "vein" theory, than what the heck does the EBV Epstein Barr Virus have to do with MS? I think that maybe MONO and or EBV attacks the veins in your neck or does something to them and causes them to play up and so on...that’s just my theory. What are your thoughts? Thanks for all of your answers :)
Sammy, real quick here, but the two are not comparible. EBV may make one more 'vulnerable' but not all. In other words it's not found to be the 'cause.' Meaning, if it were, we'd all have it, or have had it. Wording in these write ups are real critical.
If MSers are found to have this insufficiency -- it's still not a cause. I say this with some certainty because 1st studies did not reveal all MSers having this among other things. This make sense? There is a lot more work and steps to be done here w/the ccsvi.
I've not heard of mono or ebv attacking veins. Please do be careful when theorizing, Check the facts and make sure they are solid. Wouldn't want you or anyone to be mislead in this manner.....
Why not theorize the topic of veins and a virus? Is it not a mainstream theory that exposure to a virus before the age of 15 might play a role in developing MS? As well as the THEORY that minimal sun exposure as a child could play a role in MS, etc?
CCSVI is just another theory that might give further information in some manner as to the cause, treatment, and maybe, just maybe a cure. Stranger things have happened.
Every neurologist I've talked with raises their eyebrows in interest when they learn I had scarlet fever as a child.
There are many illnesses that leave some, not all people with complications. Maybe MS is a complication or secondary result of another illness. It is not impossible that a virus or bacterial infection could cause the collapse or reflux of a particular vein. There is a lot that is unknown in medicine.
I don't know why, but it is of obvious interest to them. They ask a lot of questions about it too.
I'm not implying anything factual, but I have assumed they could have considered this as one of the possible viruses that could trigger MS. Having an unknown virus before the age of 15 is thought to be one of the risk factor theories of MS.
I'm sorry, my comment/caution to sammycung was was moreso in relation to theorizing 'cures vs.causes' as it was written in the above article. Just one example, but the two words are not interchangeable.
Would never deter theorizing, where would we be without it -- just pointing out wording in articles and how they are critical. Kind of like when Gupta said there was a new treatment for MS (the disease), when in fact, he was speaking about a new treatment that is working miracles to help MSers 'walk' faster.
Hope this helps to clarify where I was coming from...
Last week, in a traditionally appointed Vancouver living room, Dr. Mark Godley made an announcement that could change the face of Canadian medicine. Addressing a multiple sclerosis support group that had formed on Facebook, the anesthesiologist and medical director of False Creek Healthcare Centre shared “very, very good news”: “A patient in B.C. had the procedure done here in B.C. today,” he said as the dozen people gathered erupted in claps, cheers and enthusiastic calls for details. The group here knows the lingo: “the procedure” is the radical and game-changing “liberation treatment” pioneered and named by Italian vascular surgeon Paolo Zamboni that has dominated MS chat rooms and academic research since it was first reported by media last November. The MS patient in B.C. showed results consistent with Zamboni’s, Godley reports: “He has warmth in his hands, the numbness has gone from his fingers, and for the first time [in years] he’s able to lie flat on his back.”
What’s stunning about Godley’s announcement is that, until now, the “liberation” treatment—a simple surgery that sends a tiny balloon to clear a clogged jugular vein—has been almost entirely unavailable in Canada, where it’s considered “experimental” by health officials. Provincial health care plans won’t fund it; doctors won’t perform it. Instead, Canadians have been flying to private clinics in Poland, Kuwait and India, paying upward of $10,000 for the surgery. In fact, the procedure that Godley describes was performed under the radar in an unnamed B.C. hospital, billed as a routine angioplasty. It was done “very quietly without the hospital knowing what he was really there for,” he says. Soon, though, such stealth will be unnecessary: in May, Godley said, his private clinic will be the first in Canada to openly offer the day surgery. “Wow!” cried out one member of the support group. “What’s the cost?” asked someone else, to which another replied, laughing, “Who cares?”
Such excitement has greeted Zamboni’s research among MS patients, who a year ago couldn’t have imagined a possible cure for the degenerative disease that affects 2.5 million people worldwide. Most are diagnosed at a young age—between age 15 and 40—more of them women than men, and most of Northern European descent. Canada has among the highest incidence of the disease—between 55,000 and 75,000 people, with 1,000 new cases every year. Not only is there no cure, researchers have not found a cause. All that’s known for certain is that the symptoms, which include numbness, loss of mobility, bladder malfunction and paralysis, are devastating.
Conventional thinking is that MS is an autoimmune condition that causes the body to attack and damage the protective covering, or myelin, around nerve cells in the brain and spinal cord, making them slow to emit impulses and move muscles. Zamboni’s findings, published in August 2009, point to the disease having its roots in the vascular system, a theory that dates back to the 19th century. When studying the ultrasounds and MRI results of MS patients, the medical professor at the University of Ferrara discovered that virtually all showed a blockage or a narrowing of veins leading from the brain, a condition he dubbed “chronic cerebrospinal venous insufficiency,” or CCSVI. Such blockages, he posited, could cause blood to flow back to the brain, resulting in toxic iron deposits that in turn could trigger MS symptoms. When he cleared the veins using a balloon angioplasty, Zamboni witnessed remarkable transformations: those in the early stage of the disease had a full recovery; those with severe disabilities showed marked improvement—more energy, renewed sensation and movement in hands and legs, and improved vision. Zamboni’s own wife, Elena Ravalli, who has MS and who inspired his research, has not had another attack since she had the procedure years ago.
As MS patients convened on the West Coast for Godley’s big news, the traditional medical gatekeepers of the disease were gathering in Toronto for the American Academy of Neurology’s annual meeting. Just how much MS has come to dominate the neurological agenda is reflected in the fact some 20 per cent of papers at the convention deal with the disease, a handful of which explore the possible CCSVI connection. Zamboni himself will make a star turn. The notion that MS could be caused by a vascular plumbing problem has turned MS research on its head, or, as a paper given at McMaster in February put it: “Is Multiple Sclerosis really Multiple Stenosis?”, the medical term for narrowed veins.
Many neurologists have yet to be convinced. At the far extreme, there’s professor Alastair Compston, head of the department of clinical neurosciences at the University of Cambridge and one of Britain’s pre-eminent MS researchers, who out-and-out dismisses Zamboni’s findings: “People with MS are unlikely to benefit from treatments that dilate blood vessels,” he said. Others suggest patients’ positive response is a “placebo effect.”
Dr. Amit Bar-Or, a neurologist at McGill University who co-authored a recent paper in the Annals of Neurology, takes a more measured approach. He says that Zamboni raises two important questions. Is CCSVI unique to MS patients, or do others have it too? And, if it is unique to MS, then is it a cause or a consequence of the disease? Bar-Or points out that as more research is conducted, there has been less and less conclusive evidence that CCSVI is found only in MS patients. Zamboni’s initial 2006 study showed CCSVI in 100 per cent of MS patients compared to zero in non-MS individuals; subsequent data by Zamboni and later researchers at the University of Buffalo, however, has not been so definitive: the first Buffalo study found 55 per cent of MS patients had CCSVI compared to 22 per cent of non-MS individuals. Then, findings released at the conference this week further showed “an increased prevalence of CCSVI in MS” but lower than Zamboni’s original study. “So what went from clearly distinguishing the illness from the non-illness [is] much more grey,” says Bar-Or
What’s more, if CCSVI isn’t the cause of MS, then liberation surgery may not be much help over the long term, says Bar-Or. “If you open up the vessels that are damaged as a consequence of the disease, you won’t necessarily solve the disease.” And given the “relapse-remission” cycle common in MS patients, it’s difficult to know yet—in the absence of rigorously controlled studies—whether individuals who report relief after liberation surgery are doing better “because of the procedure or in spite of the procedure.” Any neurologist will tell you that one constant in MS is that it’s ever-changing.
Another concern is the risk of using stents in veins (a departure from Zamboni’s balloon protocol), as many offshore clinics do to prevent them from collapsing. Inserting stents in veins, which tend to be floppy and flaccid, is more difficult and risky than inserting them in more rigid arteries. Even so, surgeons have performed angioplasties on veins since the late 1970s, mostly on legs. A CCSVI study at Stanford University was shut down in December after a stent migrated to one patient’s heart, requiring emergency surgery. Another patient died of a post-operative stroke.
The MS Society of Canada has shown reluctance to endorse CCSVI treatment. “This is a cause for real excitement,” president Yves Savoie says. Still, blind, placebo-controlled clinical trials are required. The history of MS research is peppered with purported cures—bee stings to snake venom. “We respect and honour the right of persons with MS to make the decision [about treatment],” Savoie says. “But we do not recommend people seek experimental treatment outside of clinical trials where there are safeguards for patient safety.”
Such caution is to be expected. It took Australian researchers a decade to gain acceptance for their research that proved ulcers were caused by a bacterium, not stress and lifestyle.
Geologist Ashton Embry, the founder of Direct-MS, Canada’s second largest MS charity, isn’t surprised by the skepticism. He experienced it first-hand as an early proponent of vitamin D in treating MS. “It’s finally starting to be accepted,” he says. “But if those people had been taking the proper amount of vitamin D for those 10 years it would have made an enormous amount of difference in their lives. That’s when I learned they didn’t give a damn about anything that wasn’t drugs.” And the market for MS pharmaceuticals is massive, with some estimates pegging revenues at $8 billion in 2009 and exceeding $12.5 billion by 2015. The battle comes down to competing interests, Godley says: “You have neurologists in the research communities that rely on corporate donations, large pharmaceutical companies that have a vested interest in maintaining or promoting the use of pharmaceutical agents.”
MS patients should be patient, Bar-Or says: “If this really is a cure then it ought to cure them in a year or two when we really will know more and will be much more able to endorse this as an approach.” But MS patients don’t have the luxury of time, says Godley: “If I put myself in the shoes of a patient with MS, I would want this done tomorrow. Not in six months—because I may be blind in six months. I may have no bladder control in six months. I may not be able to stand in six months.”
In Canada, MS patients and a handful of rogue doctors aren’t waiting for clinical trials or hypotheses to be proven. Dr. Sandy McDonald, a cardiac-vascular-thoracic surgeon in Barrie, Ont., has seen the benefits of CCSVI treatment first-hand. In what is believed to be the first informal liberation treatment trial, he performed six balloon angioplasties pro bono on MS patients in a limited trial earlier this year. One of his patients was able to give up his walker; a teenage boy could walk up and down stairs for the first time in years. Zamboni’s initial study intrigued him, McDonald says. He travelled to Italy to be taught Zamboni’s neuro-scanning protocol. And he weighed the ethical concerns.
“You look at the risk-benefit balance,” he says. “And, in this case, the risks are pretty darn small.” Using balloon angioplasties to clear jugular veins isn’t common, he says. But other “off-label” procedures (using medical devices in a manner they weren’t originally designed for) is routine. Venous angioplasty using stents is used to deal with renal failure all the time, McDonald says. “Are there controlled studies for that? No, but we’re doing it every day.” Cosmetic surgery is another off-label procedure, he notes: “It’s okay to get bigger breasts or a facelift, yet patients with MS, a debilitating, degenerative disease, have to wait for double-blind studies. Welcome to Canada.”
Gianfranco Campalani, a vascular surgeon in Belfast, Northern Ireland, who was diagnosed with MS in 1986, is even more blunt: “It’s unethical to prolong clinical trials when the procedure has been demonstrated amply that the risks are minimal or non-existent,” he says. Campalani had CCSVI treatment in Italy in 2006, administered by Zamboni. “The results were amazing,” he says. “My back was stronger; I could walk. Other functions not working 100 per cent came back.” His girlfriend cried the first time she saw him after surgery. Last year, when scans revealed a re-narrowing of the veins, he had another balloon angioplasty in Northern Ireland.
Campalani believes it’s scientifically acceptable that clinical trials of drugs be rigorous and safe and long given their potentially dangerous side effects. But CCSVI is different, he says: “If there are anomalies in the vascular system and you can demonstrate them, then forget about MS. You are not treating MS; you are treating a vascular condition,” he says. “And even an idiot knows that an open vessel is better than a narrowed or colluded vessel.” In some cases it may not improve symptoms, he allows: “But you have an open vessel instead of a closed one.” He has been asked to become involved in a private CCSVI clinic opening in the U.K. but wants nothing to do with it. The procedure should be publicly funded, he says, as it now is in Kuwait. Just last week the Kuwaiti government gave interventional radiologists the go-ahead to begin treating patients.
CCSVI brings with it a new public health care arithmetic. According to the Canadian Institute for Health Information, the estimated annual total cost of MS to the Canadian economy is $1 billion, more than that devoted to all infectious diseases combined. The overall direct costs of caring for and treating Canadians with MS is currently estimated by CIHI at $139 million annually, with drugs accounting for almost half of that. Meanwhile, the cost of a scan and angioplasty in a public hospital setting, according to McDonald, runs $1,500.
As dramatic as the economic reality is, the true cost of the disease has nothing to do with money, says Dr. Ian Rodgers of McMaster University, who’s coordinating a major CCSVI research project testing Zamboni’s findings. “The impact on quality of life is so catastrophic, there’s a very high emotional component to this. If there is a glimmer of hope that reversing these strictures in veins gives definitive improvement to people with MS, then absolutely it’s a necessary intervention.”
And that’s what is galvanizing a new tribe of warrior “MSers,” as they call themselves, who’ve united online—educating themselves on “Doppler scans” and sharing news and personal stories on ThisisMS.com. Facebook support groups are proliferating—forwarding online petitions and posting videos of their meeting: within hours of the Vancouver gathering where Godley broke his big news, a video of it was posted on UStream.com.
The power of the Internet and social media has changed the patient-physician dynamic, says Godley. “It’s put physicians who think that they can be guardians of our care in the place that they belong, and they need to become humbled.” An emboldened self-diagnosing patient has emerged. Sandra Birrell, a 51-year-old Victoria MS patient who organized the Godley meeting, represents the new patient-as-clinician mindset: “We’ve almost moved beyond our neurologists now to say we need to get our veins addressed,” she says, arguing that her CCSVI and her MS are separate conditions.
Heroes have emerged, like Dr. Marian Simka, a vascular specialist who operates a clinic in Katowice, Poland, where’s there’s a two-year wait list. Since the clinic’s opening last October, doctors have performed 224 procedures, 18 of them on Canadians. Canadian doctors have visited, too, says Simka, who travelled to Vancouver this year to meet with Godley at False Creek.
These people are on a pilgrimage, in search of healing, literally. One, a man in his late forties from southern Ontario, travelled to Poland last month. It was his last hope. In June 2009, he was diagnosed with primary progressive MS, the most aggressive form of the disease, for which there are no drugs. “The neurologist gave me nothing—zero talk of exercise or diet,” he says. “I felt they did everything but give me the plans for a wheelchair ramp for my house.” He was hesitant to travel across the world to get an experimental treatment, given that he could walk and even do push-ups. The risk of stent migration worried him: “But the wheelchair was more of a certainty.”
After the one-hour procedure, he felt clearheaded for the first time in months. “My wife couldn’t believe my colour,” he says. “It’s like a new life. I’m sleeping through the night; my leg is good. My balance is better. When I get up I feel great.” He says he doesn’t know how he’ll feel in six months. But the hope the liberation surgery has given him has been life-changing: “From getting diagnosed and the devastation of that, this was the best thing that has ever happened to me because now I’ve been given a gift.”
A visit to Simka’s clinic last month turned 45-year-old Calgary realtor Ginger MacQueen, diagnosed with MS in 2000, into a CCSVI militant. When she first heard about the Zamboni research, she was leery, asking her husband to scan chat rooms. Spending hours every day, seven days a week, reading blogs and medical research, turned her into a believer. MacQueen’s account of her surgery, which she describes on her “I hate MS” blog, sounds like an infomercial. “I’m walking now; all the numbness and tickling is gone from my body; the spasms are gone; I’m not limping, my foot drag is gone. I’ve got so much more energy.”
The day after her surgery, she and her husband walked for hours: “Usually I would have to stop every 10 to 15 minutes but I kept motoring.” Yet it was not her own experience but that of a 29-year-old man from Holland that had the greatest impact. “He arrived with impaired speech and his mouth looked like he’d had a stroke,” she says. A few nights later at dinner, he was a changed man: no slur, no facial disfiguration and he was talking about moving out of his parents’ house. “That’s when I got really furious,” she says. “To me it’s manslaughter if you don’t do something to help.”
Last week, MacQueen organized a protest outside of the MS clinic at Calgary’s Foothills hospital, agitating for CCSVI treatment to be available in Canada. Birrell, who plans on having the surgery, shares the sentiment: “It’s my first choice because I want to get follow-up care.” That’s also the hope of Dion Oxford, a 40-year-old MS patient who was diagnosed with CCSVI this week. Finding out he was eligible for surgery was an emotional moment, he says: “I went from inability to stop smiling to inability to stop sobbing.” Oxford, the director of Toronto’s Gateway Men’s Shelter, was diagnosed with relapsing-remitting MS 13 years ago. Last month, he was re-diagnosed with progressive MS. His decision to have CCSVI testing forced him to confront the new commercialization of the MS market: it cost US$4,500 in Buffalo, $2,700 at False Creek and $1,250 in Montreal. He ended up going to Barrie, where he was tested for free by McDonald, who is working to set up a CCSVI trial with Zamboni. Oxford hopes he will be a part of that, but research funding is required. To that end, he plans to donate the proceeds from his annual 190-km bike-ride MS fundraiser. He’s been doing it for six years and has raised more than $60,000 for the MS Society. This year, for the first time, he’ll ride for himself.
Just thought ide post the latest on CSSVI... :) Take care
Sammy, unless you wrote this entire post from scratch, you are quoting someone else without saying so. This is called plagiarism, which is a serious offense. All of our members should understand how this works, and should also understand that even if you give correct credit to the original writer, you could be violating copyright laws, which govern how others' work can be used.
Hm, thanks for the advice, but i don't think it is illeagal if i put sources: and then the site, because thats all i'm really doing, is referencing a site! And i just figgured that, some people arent that computer savy and can't follow a link, so i guess i was just doing it to help others by making it easier!
It *is* illegal if at the end of the article, there is a statement regarding limitations. MedHelp will not allow copyright infringements, which violate their terms of service.
As a Community Leader, I'm letting you know that this can be a problem. I don't want to remove your posts since I didn't think you understand the ramifications. I am 'someone' in the 'Lulu or someone' who can take action, mainly by informing MH of a problem.
The question of how valid or reliable these quotations are remains open for debate. I am one who lookings very seriously at anything that includes hype and superlatives.
Hey, i just did some research and as long as the the post has a citation/reference that it is ok. If you have a problem with my post, i am quite happy for you to remove it. No sweat! :) Infact just remeove it to stop any further opinions. This is not the type of discussion i intended from this post, i intended on giving some people hope and thought they might have enjoyed knowing some new information about CSSVI. Seems it's more drama then it is worth!
You have had quite a few individual posts without attritbution. Whatever your research tells you, that is not legal. That's why I've intervened.
I have no interest in deleting anything, just because I find it totally invalid. That's the purpose of a discussion forum. I do, though, point out where I believe hype is misrepresented as fact. We all want hope for our members, but not at the expense of good science.
SERIOUSLY, can you please just take it off! This is just embarrassing now! It's just a ruined post now, if you know what i mean. I has turned into a debate on a totally different subject. I would apreciate it if you removed it...thanks :(
Rarely in my 3 years here have I seen such disregard for our purpose.
Our community is filled with the most supportive, education driven, well-meaning bunch of folks we call family - rarely do you have that in this environment through an online community. And, we all benefit from each other in so many ways.
Surely we can debate as we learn, but clearly this should not go on this way, or in this manner. We are all adults afterall.
If anyone has concern over this post, please feel free to bring it up to anyone of us CLs and we will work on resolving.
I, personally, see no reason at all to delete this thread. The discussion has been good, and some questions arose as to how legal the wholesale copying was, how poorly it was referenced, and how valid the statements were. Those are all things that can and should come up in debate.
I checked out the appropriateness of keeping the information " as is" with the Moderators of MedHelp. As someone who has written papers referencing other's statements and works and who has some training in the legal field of Intellectual Property, I was also very concerned about how legal and appropriate it is to do this. When I started with MedHelp 3 years ago such posts were always deleted.
My answer from MedHelp is that it is "okay." They acknowledge that it does involve copyright infringement, but that so many people do it that they can't control it anymore. They ask that any statements copied word-for-word into a post be accompanied by also stating
1) Who said it
2) Where it was found - newspaper online, journal, press release
3) Date the original was written or posted
4) And the address to the online site.
So, we have an answer as to whether it is "allowed". It is "allowed", but only because it is impossible to police. We all should be repsonsible enough to give full info about our copying so that the ownership of the writing is clear. That is only ethical and responsible. In truth we should not be copying anything without the authors' permission, but that is so routinely ignored in many of the forums that MedHelp has given up trying to police it.
None of this was an attempt to censor or harass, but to respect the legal rights of others. We're all sorry it seemed to get heated. CCSVI has been discussed in many threads, almost all in a positive light and with interest. It is clearly not a forbidden topic.
I would, however,think that when someone posts such theories they should be prepared to have the weaknesses and inconsistencies of the statements pointed out and rebutted. Such comments are not attacks on the poster, but should be healthy discussion. If you ONLY want people to agree with you, then you should mention this in the original post.
Th Co-CL's (Myself, Lulu, ess, Shell) are all clued in to this change in MedHelp's attitude. this should not come up again.
I would like to add that there is allot of information coming out now that is published on CCSVI that is helping to clarify the direction that CCSVI is moving in. It does not have the hype that media people have injected into the possibilities that this research is unfolding. I am finding that keeping up with this information takes time and persistence, and it is evolving quite fast now. A good reference site (as only one example) is http://msrcsharing.yuku.com/forums/2/t/LATEST-MULTIPLE-SCLEROSIS-NEWS.html?page=1. Although many of the articles are not peer reviewed they are an indication of where this research is going as it comes available direct from the source.
Keep an open mind is my thought and keep reading, we are at the beginning of some new thinking on our disease and with the Internet we are able to see what is happening in real time, something that could not have been possible until now. Its very early in a long process.
Alls good now. Yes I agree, and i hope this post is over! Although things are sorted, i wont be posting anything anymore as i am too scared too. I just feel stupid that this whole thing even blew up like this. I think it is best that i just read other peoples post that have similar answers or questions like me, instead of posting my own--That way i won't get into "trouble" again.
Thanks sammycung for the interesting information. I am happy to hear about CSSVI and I regard it as hope for myself with RRMS . I hope it really works , I would like to try it. I am on TYSABRI 2 yrs. I understand the great risk with that drug. I am happy to be getting it monthly. I appreciate the caution from Quixotic. I understand because my bubble has been broken many times in the past. Never the less I am very Excited and hopeful ! Good luck to everyone.
I found this thread very interesting. As an undx person I don't have much knowlege about MS specifically. But I am old enough to know that false claims happen all the time.
There are a lot of desperate people out there and based on what I have read about this CSSVI treatment I hope that it is followed up on. Perhaps it is part of a missing piece of MS?
I try to keep an open mind but am suspicious at the same time.
I am interested in the whole virus thing before age 15. Never had scarlett fever but my dad did as a child and I had mono at 13. That mono has been haunting me most of my life with neck issues.
Sorry, ramdom thoughts there. Anyway, enjoyed the converstation.
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