Treating CCSVI: What can we learn from coronary angioplasty?

May 7, 2010 09:02 by Dr. Lorne Brandes

As I write this blog, hundreds of MS patients have just rallied at legislatures across the country, asking the provinces to pay for immediate CCSVI testing and treatment.

And, in what can only be described as a stunning turnaround from its initial negative response to Dr. Paolo Zamboni’s paradigm-shifting hypothesis that multiple sclerosis may be primarily vascular in origin, the Canadian MS Society, supported by the federal Liberal Party, is now lobbying Ottawa for $10 million to help kick-start CCSVI clinical trials and research. It is a tacit, but welcome, admission that the $200,000 to be awarded next month to successful applicants in the organization’s special CCSVI grant competition falls far short of the mark.

"The MS community has spoken. They want access to diagnostics and treatment for CCSVI in Canada. The MS Society has already committed to funding CCSVI research and now we are calling on the Government of Canada to do its part,” commented MS Society board chair, Linda Lumsden.

While lobbying the federal government is not guaranteed to quickly produce results, let alone be successful, I believe I know a groundswell of public support when I see one. So do politicians, bless their hearts. The CCSVI train has definitely left the station, piloted by thousands of brave patients with MS who, enabled by the incredible power of the Internet, have refused to take “no” for an answer.

As all of this unfolds in Canada, a new report from doctors in Jordan has just been published. While their ultrasound tests to assess blood flow in the internal jugular (neck) veins were not blinded to prevent “observer bias”, they found that 21 of 25 patients with MS had CCSVI, as compared to none of 25 healthy controls.

Assuming that a highly significant association between CCSVI and MS continues to be shown, let us turn to treatment (happily mentioned in Ms. Lumsden’s statement): the procedure of balloon venoplasty is currently thought to be safer than the use of stents to open up narrowed or blocked veins. Although simply a variation of balloon angioplasty, a relatively safe procedure used in hundreds of thousands of patients every year to treat blocked coronary and other arteries, opponents of treating CCSVI outside of clinical trials continue to raise the issue of safety if this method is applied to thin neck veins in MS patients. Are there not bound to be serious adverse events associated with such treatment?

In fact, there is no easy answer to that question. Why not? Because, with the exception of Zamboni’s published studies in MS, there appear to be no previous reports, let alone clinical trials, of balloon venoplasty on jugular veins in the entire medical literature! In other words, until Dr. Zamboni linked jugular vein blockage to MS, it seems that nobody paid attention to the existence of “asymptomatic” anomalies in neck veins, much less their treatment.

Then what about angioplasty? Here the literature is very revealing, but in a completely (to me) unanticipated way.

In a comprehensive 1995 review of the subject in the American Heart Journal, Mueller and Sanborn wrote: “The history of angioplasty… has been marked by a steady stream of intellectual and technological advances. The promise of non-surgical revascularization has led to unbridled enthusiasm for these devices despite the relative lack of long-term or randomized data on safety and efficacy.” [The italics are mine].

Believe it or not, Andreas Gruentzig, the “father” of the modern double-lumen balloon catheter to treat clogged arteries, perfected and made his devices on his kitchen table in 1975. After conducting a few animal and human cadaver experiments, he performed his first coronary angioplasty using a “kitchen catheter” on a living person in 1977!

After presenting the results of his first four angioplasty cases at a meeting of the American Heart Association that same year, it is reported that his colleagues burst into applause, recognizing this breakthrough with a standing ovation. Thereafter, Gruentzig travelled the country, teaching his method to scores of other doctors.

Soon, angioplasty was in widespread use without having gone through (up to that time) a proper clinical trial!

One would have to be forgiven, then, for suggesting that, had Dr. Zamboni made his discovery in 1977, patients with MS likely would have had their “liberation procedure” performed, probably with little or no hesitation, by the eager Gruentzig disciples of that era, and certainly without the stringent time-consuming clinical trials required in the 21st century.

Am I advocating a return to the past? No. But it is certainly sobering to learn that balloon angioplasty, a highly effective, often life-saving procedure in wide use today, went through considerably less investigation prior to its adoption than Dr. Zamboni’s balloon venoplasty for the treatment of CCSVI… an important consideration for those who argue against treating blocked neck veins without years of further study.

Coffee, alcohol and cancer: To drink or not to drink?Is it possible to drown on dry land?Go ahead and enjoy your diet soft drinks

Comments

May 7. 2010 10:37

Dr. Zamboni’s research reminds me of a famous Canadian Doctor, Sir Fredrick Banting.
In the fall of 1920 Dr. Frederick Banting had an idea that would unlock the mystery of the dreaded diabetes disorder. Before this, for thousands of years, a diabetes diagnosis meant wasting away to a certain death. Working at a University of Toronto laboratory in the very hot summer of 1921 Fred Banting and Charles Best were able to make a pancreatic extract which had anti diabetic characteristics. They were successful in testing
their extract on diabetic dogs. Within months Professor J. J. R. MacLeod, who provided the lab space and general scientific direction to Banting and Best, put his entire research team to work on the production and purification of insulin. J.B. Collip joined the team and with his technical expertise the four discoverers were able to purify insulin for use on diabetic patients. The first tests were conducted on Leonard Thompson early in 1922. These were a spectacular success. Word of this spread quickly around the world giving immediate hope to many diabetic persons who were near death. A frenzied quest for insulin followed. Some patients in a diabetic coma made miraculous recoveries.
While insulin is not a cure, this medical discovery has and continues to save millions of lives world-wide. The production of insulin has changed a great deal since 1922. Modern science and technology has made high quality insulin and delivery systems available to diabetic persons.
When I was reading about Sir Fredrick Banting on the internet I was very intrigued about the following note because it jumped out at me as being so applicable today in our search to solve the mystery of MS.
The following represents an entry into Dr. Banting's diary, March 21, 1931:
It occurred to me when we were puffing up the hill and the train was speeding along away below that the engine with all its power could not go up that slushy, soft, snowy road as fast as we could. Power is useless unless directed in the proper channel. People have different powers and the big question in life must be-"Are we on the right road for travel ?" We will certainly not get far in our given time unless we have chosen the road that is fitted to our particular locomotive.
It took only two years for the discovery of Insulin to be used on diabetic patients, why will it take 5 – 10 years to research CCSVI when so many patients, who have already been treated, report improvements?I truly hope the MS Society will be investing and investigating in this ground breaking research and that vascular doctors and researchers will be supported, in the hopes of discovering if venous insufficiency is part of my MS.

Barb Bridger

May 7. 2010 10:43

The difference is that there is a very clear link between cardiac disease and blocked blood vessels, but that link does not exist bewteen MS and veinous blockages. Prelim reports out of Buffalo suggest 2/3 MS pts have blockages (why do the other 1/3 have MS?) and 50% of people without MS have blockages (the prevalence of MS is no where near 50%).

Also, if you read Dr. Zamboni's origional studies, lots of questions are raised as to how he came to his conclusions regarding outcomes - how did he establish baselines for relapse rates (seems to be based on patient self-reporting, not to mention significant referral bias), the single physician assessing outcomes was unblinded, etc.

I wonder if you have read the origional studies with a critical eye and recognize their deficits, or if you are using W5 for your medical education?

Does this treatment have potential - absolutely! Is it a slam dunk that is worthy of avoiding all the scientific study that we subject modern treatments to in order to ensure safety and efficacy, as well as efficiency in health care? Not so clear.

In the end, would you be willing to treat the thousands of MS pts in the country with a treatment that may prove to be ineffective and/or dangerous, wasting health dollars and possibly increasing morbidity, instead of waiting for the process to procede in the same manner it does for every other new treatment.

As the King once said, "Only fools rush in..."

neurodoc

May 7. 2010 11:07

Neurodoc, the alternative to NOT fast tracking CCSVI diagnosis and treatment means MS continues to be a billion+ dollar drain on the Canadian economy and health care system. People continue with their $20,000 - $40,000 per year drug therapies that may or may not slow the progression. Meantime, people with MS diagnosis who have their blocked veins fixed continue to improve and perhaps have a chance to remain, or regain, their independence and productivity. So who's wasting money?

We're not talking about baboon heart transplants here. It's looking at veins, looking at blood flow, and fixing it if it's impaired. If it were any other organ that had refluxing blood due to stenosis, we would not even be having this conversation because it would be a done deal.

MSriotgrrl

May 7. 2010 11:31

Watching and hearing the providers egos get in the way is nearly comical. Neurologists claiming these vascular docs don't understand MS is a neurological issue is too common. Talking down to the folks who found this correlatoin without vetting their background and body of work is further making the detractors look foolish.

Thanks pfor looking out for us (MS'ers) but please help us be tested to see, on a grand scale--the MS population, if this bears fruit. If it seems to not, then stop, but postponing when folks see hope is not a viable option in these days of the web.

If anyone has a blocked vein, should it be known, evaluated, and fixed? I believe the answer rarely will be no . . .

Roy

May 7. 2010 12:01

Thanks once again, Dr. Brandes-
for your intelligent discussion of the history of angioplasty and how little will really understand about the importance of venous return of the jugular veins. Dr. Dake said the same thing to me and my husband Jeff, after he saw the severe stenosis and malformation of my husband's jugular veins--"I can't believe we've never studied this before!"

As you know, Kuwait has adopted early intervention, due to the advocacy of an interventional radiologist. A curiosity has been why the increase of MS rates in Kuwait. I stumbled on an interesting article this morning, and wanted to bring it to your attention. Obesity rates in Kuwait are now off the charts. My initial theory (which brought me to Stanford and the endothelial researchers there) was that endothelial disruption was contributing to rising rates of MS and autoimmune disease around the globe. Dr. Zamboni's discovery fit into that paradigm, which is how I was put in touch with Dr. Dake. I truly believe endothelial disruptors (saturated fats, low vitamin D, lack of exercise, heavy metals and toxins) are contributing to the nitric oxide disruption and higher levels of C-reactive protein found in those with heart disease AND venous stenosis. We have a world-wide epidemic of vasoconstriction.
http://www.cnn.com/2010/WORLD/meast/05/06/kuwait.fast.food.obesity/index.html?hpt=Mid

I believe there is a strong correlation to stroke, heart disease, and what we are finding in venous stenosis....and it's all in the lining of the blood vessels- the endothelium. Thank you for continuing to make these connections for people. The more doctors that can help explain this paradigm shift, the better!

Joan Beal

May 7. 2010 12:25

For those who insist treat now, worry about the long term effects later, I would like to remind you of the Vioxx story (http://oss.mcgill.ca/everyday/vioxxx.pdf).

All the proper procedures were followed, large trials instituted, clearance given millions of prescriptions written, then, disaster.Billion dollar lawsuits. "How could this happen?" cried patients and governments.

Now, patients expect physicians to go ahead with an unproven, under-investigated treatment. If it works, Dr. Zamboni is a legend and likely nobel prize winner. If not, who will pay for the poor outcomes. Will patients understand that physicians were forced to procede without the needed evidence by gov't and lobby groups? Not likely. Every physician that performed or recommended the treatment will be sued and cast into ruin. Who would like to volunteer to be in that group?

Remember "cold fusion?" Cover of TIME magazine in the late 80's - our energy needs were solved forever. But wait, no one could get the same results, and here we are 20+ years later and still no cold fusion.

As a physician who treats lots of patients with MS, I am excited about the treatment for the sub-group of MS patients it works on (only helps relapsing remitting in Dr. Zamboni's article) and hope this is the solution to this horrible disease. It could very well be the paradigm shift we need to solve the problem. But, without solid science to back it up, I will not recommend it to my patients.

neurodoc

May 7. 2010 16:51

Your scientific process and desire to study and test this potentially life-saving procedure is time-wasting and pointless. You want to study it, and I want my life back! I say sign me up and I will gladly be a guinea pig for this study! I want to stop feeling electric shocks in my arms and legs, I want to give back my walker that I shouldn't have to use at 43. I want to be able to go back to work and play with my 7 year-old daughter. If it gives me even a few weeks of some semblance of normalcy in my life, I will happily accept any consequences that arise in the future!!!! I have RRMS, so I am in the category that can potentially benefit from this procedure; why can I not have it done if I want it and am willing to sign a waiver absolving anyone other than myself of any blame if anything goes wrong??

MSsufferer

May 7. 2010 17:28

I once again thank you very much for your support in our fight. I am realizing that CCSVI is so much simpler than it is being made out by the Multiple Sclerosis Society. They have NO business to insert themselves to a procedure that like you say has been around for decades. The MSS theories have no credibility any more. I have been misled for 20 years and now I am being DENIED a simple ultrasound to get confirmation of something I KNOW I HAVE. CCSVI is now being proven daily and if you have been diagnosed properly and have the correct test YOU WILL HAVE CCSVI. My body works on my blood circulation. I do not have this luxury that all nay sayers have. I KNOW when I get liberated I will have the tight burning, tingling and needle pins throughout my body gone. Why? Because my body will be getting the correct blood flow that all other non MSers have and take for granted. I know it will relieve my Lymphedema, my bladder and bowel problems and hopefully other symptoms that I am sure you do not want to hear about! The only thing I will not be expecting is to walk again. And I am OK with that. Just to get relief and a better quality of life is all I want.
I do go back and read other comments and for those thumbs down people you have no compassion and you do not have CCSVI. If you are worried that the money you will be paying for this it should not be a concern. If I have to pay to have treatment in Canada I most certainly will pay my share. Not to put the burden on people who do not agree. My choice.

Shirley Renshaw

May 7. 2010 17:29

this is not a drug therefore what clinical trial or research needs to be done? if this wasn't labeled MS NOBODY WOULD CARE !!! it would be a quick and simple angioplasty on your veins and then you get on with life...and neurodoc, shut up we all know who you are and quite frankly you should put your sorry ass in my shoes so i can watch you cry...you have no business spouting your negative misinformed crap at hope. mom used to tell us "if you have nothing good to say dont say anything." stop being a barnacle on the ass of progress...

crazylegs

May 7. 2010 17:30

I wish fools would stop writing about the Buffalo study.It is usually neurologist who quote it.Fact is the numbers from this study are tainted by the use of M.S.patients relatives as the none M.S. people. No wonder veins are blocked! Also , where were these people trained to do the ultra sound test?Italy.....i think not. Try again with professionally trained people to do the testing and do not use related people as the none M.S.testing . And finally stop the none sense 100% are stenos ed

steve garvie

May 7. 2010 17:40

Dear Dr. Brandes,

Thank you so very much, once again, for your eye-opening blog and for staying with us on the CCSVI. issue We very much appreciate an unbiased medical profession who cares about us, our health and well-being which is at risk as we continue to fight (with what little energy we have and our wide-ranging disabilities and challenges) for immediate CCSVI testing and treatment here in Canada.

In my nearly 16 years of MS, my own neurologists have constantly warned me about the harmful effects of stress on MS and how they can exacerbate my symptoms - and yet, here we are in a most stressful situation where our right to appropriate health care for a vascular condition is being denied simply because we have MS.

Neurodoc, are you not concerned about protecting your MS patients from having relapses with all the overwhelming stress imposed by "recommendations" that are keeping us from accessing CCSVI testing and treatment here in Canada?

How are you dealing with the following results of solid science? The March 29th report from Stanford studies showed that certain MS drug treatments (which have been dispensed to patients for years!!) were helpful to some MS patients while harmful to other MS patients, actually causing their conditions to worsen.

Clearly, more solid science is needed on this new revelation. More solid science is needed to establish a test that can identify which MS drug treatment will be effective for which patients. So, what are you doing in the meantime? Are you still prescribing these drugs to newly diagnosed patients - not knowing whether they will be helped or harmed? Have you disclosed this information to MS patients already on these drug treatments?

You wrote: "In the end, would you be willing to treat the thousands of MS pts in the country with a treatment that may prove to be ineffective and/or dangerous, wasting health dollars and possibly increasing morbidity, instead of waiting for the process to procede in the same manner it does for every other new treatment."

Stanford's results have now shown that for years, these drug treatments have now been proven to be "ineffective and/or dangerous to some patients, wasting health dollars...."

Have you prescribed any of these MS drug treatments to MS patients since March 29th, 2010, even though you don't know if the patient will be harmed or helped?

Dr. Brandes, I thank you again, for caring about us MS patients.

God Bless,
Chrystal

Chrystal

May 7. 2010 17:40

Mr/Ms neurodoc
You really don't get it. You have no clue. You have to get some compassion working. This is not new. I have been deceived and now you deny me a simple test. That is what we all want to prove to you that this is not your concern but the Vascular Community expertise. As Steve Garvie said "don't send an electrician to fix a plumbing problem!!! ". In case you do not know Steve Garvie is, he has been Liberated and his quote hits home in a great way.

Shirley Renshaw

May 7. 2010 18:10

I strongly support the compassionate treatment of CCSVI sufferers now.

Reading the contrary views of Neurodoc, I think there is a basic flaw in his logic. The wait for "more research" alternative he advocates as a no loss approach. This is NOT true, for the people with infirmity and suffering, it represents a great loss including very many lives and the chance of recovery for many more. This is a simple case of risk management and the "treat now" alternative is vastly superior.

Although Neurodoc does not say it, his position sounds like, if I have to do full clinical trials and jump through hoops to prove my new drug treatments, I want CCSVI to suffer the same fate. This does not consider the people who are ones that medical sciences are supposed to be concerned about.

Comparing CCSVI to Merck's VIOXX scandal is ludicrous. Just think about it for a second, enough said. Comparing it to cold fusion is also pretty weak. CCSVI treatment has been replicated hundreds if not thousands of times already with excellent results. That is why people are screaming for it.

Conrad Greer

May 7. 2010 18:17

Steve, these "fools" prefer to spew incorrect information about CCSVI, the Buffalo studies, etc., because that is the only thing that strengthens their weak case.

They obviously lack any conscience - and yet they claim to be protecting MS patients with their recommendations/advice/interference.

It's wonderful to know that there are wonderful, caring doctors like Dr. Brandes, who care not only about patients, but also about accurate information.

Chrystal

May 7. 2010 18:21

Your own words mock you, neuro-doc.
"All the proper procedures were followed, large trials instituted, clearance given..." "then, disaster.Billion dollar lawsuits."
So, even if they take your advice and wait 5-10 years for CCSVI treatmnt trials, there are still possibilities of failure or disappointment. Meanwhile, ten years of further brain damage has occured for the huge MS patient population which would have had the opportunity for a better quality of life.
"If it works, Dr. Zamboni is a legend and likely nobel prize winner. If not, who will pay for the poor outcomes." I can guarantee you, the line of pateintswilling to sign a waiver would be long.

Julie Way

May 7. 2010 18:37

Neurodoc
I certainly hope that you know the difference between a drug and a medical procedure? May I assume your caution also applies to the use of all drugs that are used today for Multiple Sclerosis? None of the drugs cure MS. The ones that are not off-label only claim to slow down the progression. My question is if I cannot be told how fast or slow the progression of MS will be - then how can anyone know if it could be slowed down?

I did take avonex for 8 years. I was terribly sick every week. When I progressed anyway to SPMS, I stopped. Side effects of the other drugs that I have taken have also made me terribly sick. I now have days when getting dressed is too overwhlerming. Do you really prescribe that I just sit back and wait?

I suggest that you do a little more research, papers have been written on this topic for over 100 years, Dr. Zamboni was now able to have medical equipment that was able to provide some answers to these theories. He did not just pull things out of thin air.

The questions that should be raised today is how can we improve the diagnosis of CCSVI. How can we better treat CCSVI.

At the very least have some compassion and allow me to decide if I want to have a procedure done that has very little risk and a tremendous potential to improve the quality of my life. And yes, this procedure has helped many with SPMS.

Jane Mescon

May 7. 2010 18:44

Neurodoc, I had an MRV on Tuesday that showed that my left jugular vein is "almost completely closed". Notwithstanding any other health conditions or symptoms I might have, do you recommend that I let that go untreated? Or should I have been denied the MRV in the first place, because then the blockage would not exist?

Charles

May 7. 2010 18:52

If the Neuro's are so concerned about the welfare of MS patients and their care, why are they not lobbying the Government and the College of Physicans and Surgeons to express their desire to do the proper testing. I'm sure every Canadian MS'er would be willing to volunteer for proper testing and if required Angioplast procedure. The Neuro's could follow them for years and report on their finding. Would this not satisfy they quest for proven or unproven results, similar to how they procede with all the drug trials which carry numerous risks.
The Neuro's cannot tell us what causes MS (no one can) and why the sympton's vary from person to person. The MS disease was regarded as the catch all for which they could not explain so maybe we need to redefine the MS disease.

Lets remove the patients that suffer from CCSVI as I believe they have been misdiagnosed by the Neuro's and never did have MS. The CCSVI patients should be referred to Vascular specialist and the Vascular surgeons can determine their best treatment. The remaining patients that do not have CCSVI can stay with the Neuro's and they can continue their research as they always have and hopefully they will get better results with their drug trials with all the CCSVI patients removed. Put your money and concern where your mouth is and allow the Testing to determine once and for all if this is a hoax.

Carol Prest

May 7. 2010 19:09

Neurodoc,
I feel you have quite the ego as a Neurologist. I mean seriously how does your head fit through the door? Maybe it needs to be known then who you really are so that the patients you treat everyday can see your "true" colors. If you were my neuro and I heard you talk like this about CCSVI I would hit you with my cane and never come back ( and say oops that was a muscle spasm) Whether or not you think CCSVI works is really irrelevant because we MSer's are not asking for the Neuros to treat us we want the ones who know how to perform the angioplasty to. Does that hurt your ego? Well too damn bad!
Once again why get an electrician to fix your plumbing problem. So go away and quit pissing on whatever hope we have. This is the first time in my life (19 years) since I was diagnosed with MS at the young age of 18 and I believe we might see the light at the end of a dark tunnel in regards to this awful disease. I have many friends come back from Poland and I have seen for my own eyes how much better they are doing now. So where ever I have to go I will to get my life back idiot! Now go crawl back under your rock you crawled out from and quit emailing us on work time!

flygal

May 7. 2010 19:17

When I began doing Inclined Bed Therapy (IBT) 4 months ago it became clear that for me at least the issue is related to kinked veins. In fact, I can diagnose it now myself without the doppler or medical lingo because I can feel it in my body. The kink is most apparent in my right vein that runs from about an inch in from my right ear and down through my back into my lower body. When I lay down on my left side (and only raised with pillows fm my waist up about 45 degrees) I can feel the warmth of blood begin to flow from my right cheek/side of face down into thru my neck down into my right side and somewhat move in towards the middle of my back..... It becomes a visual in my mind! *Not* that I am using imagery, but that I am literally seeing the river of my large vein on my right side split off into little streams as the kink is undone when I lie this way.

And: Cog for is now gone - I can see more clearly than I have been able to do in 3 years, my sweat smells differently, I fall asleep within 5 minutes of the set up, etc. etc. It is very much like the post-Zamboni procedure reports I am reading on www.thisisms.com

Just a note Food for thought,
Yours,
Anne

AnneAnne

May 7. 2010 19:17

I have been suffering with this progression of "MS" for 10 years now. My family lost my sister on Christmas Eve 2009 due to complications of MS... I refuse to end up where my sister did. If this procedure has ANY indications of help I will be the first one in line.

Rachel

May 7. 2010 21:27

The unbridled enthusiasm of multiple sclerosis sufferers for new strongly and reliably efficacious therapies is entirely understandable but needs to be tempered by the unbiased and thoughtful analysis of the evidence by neurologists and researchers. The breathless enthusiasm with which some members of the lay media echo in unfiltered fashion Paolo Zamboni’s theories and claims is less excusable, however. It is encumbent on members of the media, who claim to be "medical correspondents", to exercise some degree of judgement and discretion in presenting Paolo Zamboni’s claims. I find it somewhat implausible that the thousands of neurologists and researchers who have been investigating the causes and potential treatments of multiple sclerosis, and who have invested tens or hundreds of thousands of person-hours of effort into unlocking the incredibly complex and interrelated autoimmune-genetic-environmental-infectious factors underlying the disease, actually missed out on the fact that it was just some blocked veins in the head that were actually responsible for the disease. Boy oh boy, don't all those people look stupid now? People should be reminded of previous cases where apparently effective therapies for complex diseases (that lack truly effective conventional therapy) which ended up being shown to be ineffective or possibly dangerous. In many of these cases, one or only a few investigators were the pioneers and enthusiastic advocates for the therapies and in all cases these individuals initially presented observational data that was remarkably positive. These therapies include bone marrow transplantation for metastatic breast cancer, bone marrow transplantation for amyloidosis, transmyocardial laser revascularization for refractory angina, Batista procedure (reduction left ventriculoplasty) for dilated cardiomyopathy, lung volume reduction surgery for emphysema. More "fringe" therapies have included Di Bella multitherapy for advanced cancer, sodium bicarbonate infusion for cancer (based on Tullio Simoncini's claim that cancer is caused by a fungus), and chelation therapy for advanced coronary artery disease. The question I would like to pose to the medical community and to the public is the following: Should medical professionals and government agencies allow patients to pursue whatever therapy they want, irrespective of the presence or absence of quality evidence? What if such therapies are later found to actually harm patients? Who would then be held responsible? And, of course, is the government obliged to pay for whatever therapy patients want to pursue, irrespective of the available evidence and the involved costs?
ZJE.

Zoltan Egri

May 7. 2010 21:50

To AnneAnne-
Thank you for the information about your success with IBT (inclined bed therapy). This at least can be a partial fix until the medical community finishes embarassing themselves as they have obviously been doing for decades. But, let's move forward.

In part, I have to support one teeny tiny thing neurodoc has said. Very careful monitoring of this procedure needs to be assured, when it is approved. Funny, how so many things doctors prescribe and implant are not actually FDA approved, but I digress. The fact that Dr. Zamboni is correct on his medical re-discovery brings forth the point that the entire explanation of the MS disease has to be re-evaluated. The medical system has not been aware that MS is a vascular condition (odd since they recognize Alzheimer's and Parkinson's is vascular) so this embarassing moment means they are back at square one. Since neurodoc has suggested that research is necessary before implementation, I wish he could think of at least one meaningful piece of research that he would want. Yeah, he doesn't know of one. That's what I thought. OK, here's one for you. And think hard about this guys, because this should start TODAY. The clinical evaluation of MS, especial new onset and relapse should include a differential diagnosis for cerebral venous thrombus. Well, they never do that do they? However, the CCSVI could be the after effects of a tendency to form blood clots in the venous sytem out of the brain. Did you catch that Dr. Dake at Stanford had a fatal bleed on one of his patients? That's why there was the screeching halt on the procedures. Whoah, a bleed. Could it mean there was a clot up there, and active bleeding process? A platelet propelled coagulopathy? From now on, diffusion wieghted MRI to rule out CVT on relapse or active progression. WHETHER OR NOT THERE'S GOING TO BE ANY balloon angioplasty. And while you're at it, might as well learn your platelet cytokines, because they are potent white cell recruiters. Activated platelets are known to be circulating in MS and there have been platelet associated deaths due to thrombocytopenia. Could it have been consumptive thrombocytopenia? The face of MS understanding just changed and the docs have a lot of catching up to do. BTW, in cases of ischemia of the brain, (low blood flow) it is well known that antioxidants are effective in reducing axonal death. Big pharma won't tell you that!!!!!

Nanobot

May 8. 2010 09:45

http://www.facebook.com/#!/group.php?gid=371923465195

is where we are posting all non pharma methods of relief from ms symptoms...we call it the ccsvi society...ms'rs standing together helping each other talking with each other and providing support and encouragement...we know your pain because we have it too. neurodic feel free to come see how ms'rs want to be treated because your manners and attitude suck towards the people you claim to help.

crazylegs

May 8. 2010 14:29

Thanks for the information on the CCSVI theraphy, my wife was diagnosed 5 years ago after living with the symptoms for more than 20, hope this will work, lets keep in touch please!

fracapa

May 9. 2010 19:24

First, perhaps we should cut neurodoc some slack. After all, he/she has many MS patients and if those patients are allowed access to testing and treatment for CCSVI there goes a good portion of the practice. If neurodoc is also a researcher and testing and treatment for CCSVI improves the health of MS patients as has been the case for those who have been fortunate enough to be tested and treated, there goes the research grants from pharmaceutical companies, consultancy fees and speaking honoraria. This is a huge impact for neurodoc and other neurologists who live off MS.

As to why neurologists did not recognize the link between blocked veins and MS only the neurologists can say. That link was first established in 1863 by Dr. E. Rindfleisch and has
been pursued by researchers since then but that research has been ignored by the MS neurologists and large MS charities. Dr. Zamboni has built on those years of research and has published his findings in peer reviewed medical journals since 2006/2007 - again, ignored by the usual group until last Fall when CTV aired a documentary about his work. The International Union of Phlebology studied the venous malformations that constitute CCSVI and have published their findings in International Angiology. For these experts in venous malformations, CCSVI is congenital and is not the product of post-birth environmental insults or the MS disease process - in other words, MS does not cause CCSVI but rather that CCSVI is strongly suspected of being a casual factor in MS.

There is more evidence existing right now to support Dr. Zamboni's work and the work of many other researchers who have followed Dr. Rindfleisch than there is to support a mouse study done in the 1930s that resulted in MS being considered a strictly autoimmune disorder. Neurodoc and other neurologists have used millions of dollars of research money to pursue the autoimmune angle and have come up empty handed. The drugs that are prescribed for MS are largely ineffective, expensive and have nasty side effects - including death - and the stem cell treatments, which include massive does of chemo, have resulted in one death that I know of. So I don't buy the neurologists' claims that they are so concerned for patient safety that they must shut-down any avenues MS patients may have for testing and treatment of CCSVI in Canada. Those who live off MS have far too much to lose if patients are tested and treated for CCSVI.

Linda

May 16. 2010 19:22

At age 65 & had MS for 25 years I WILL NOT wait for the MS Society , Neurlogists & drug companies to OK this procedure. I still run my own life.
Dale Woolsey
Moose Jaw Sk

Dale Woolsey

May 20. 2010 17:17

Dear M.S. patients and Avis ,

I just saw my neurologist at the M.S. Clinic at the University of British Columbia, Vancouver.

A team of radiologists at U.B.C.recently went to Italy to learn from Dr. Zamboni the precise procedure that Dr. Zamboni uses to select the optimum veins to widen ( out of all of the hundreds that may be narrowed in an individual ) to improve M.S. symptoms.

Dr Zamboni allowed the U.B.C. team to work on several of his patients and the results were 100% narrowings found in M.S. patients. The same percentage as Dr. Zamboni found .

The team at the University of Buffalo sought to improve on Dr. Zamboni's painstakingly developed vein selection procedure and is not doing it exactly the same way. This may be why the results are not looking anywhere near as good. This modification of the procedure is not noted in the University of Buffalo's publication. It may be the most important piece of information that M.S. patients need to know if we want funding to continue for this procedure and not have it swept under the rug and lost forever when Dr. Zamboni's results are not reproduced.

M.S. patients need to be a force to demand that centers repeat the study exactly the way Dr. Zamboni has designed it.

Dear Avis, you are a wonderful advocate for M.S. patients. You may be one of the most important people in the history of M.S. as you fight for us .

Please interview the interventional radiologists at the University of British Columbia , Vancouver to learn of the eye - opening visit they had with Dr. Zamboni. As you can tell from what I've written, you could make or break the continued fight to have this procedure made available to all of us.

I am grateful to the team at the University of Buffalo for doing there study, however I don't want there modified procedure and results to be an inadvertant road block to curing M.S..

Thank you Avis!
Karen Walker,
Pharmacist
Delta , B.C.

Karen Walker

May 20. 2010 17:25

To All M.S. patients,

We all want to be treated right away, however when patients go to Poland or India for treatment and the optimum veins may not be selected, patients come back with less than optimum results.

The government and the public hear about this and will lose interest in funding this procedure for us.

Let us look to centers who are willing to repeat Dr. Zamboni's procedure presicely so that his excellent results can be re-produced and we will have the funding we need.

U.B.C. wants to do the study fast too. They need funding and don't have it yet.

Much of the money from the M.S. society of Canada is going to U.S. centers instead of Canadian centers because the M.S. societies of the two countries have collaberated on this..

Doing it the correct way is the fastest way. If we go for speed instead of accuracy, we will crash.

Yours truly,
Karen Walker
Pharmacist
Delta, B.C.
Canada

Karen Walker

May 24. 2010 15:29

New Interview with Dr. Zamboni on May 23/2010 :

http://muliniavento.stefaniacalledda.it/?p=458&gtlang=en

Karen Walker

May 24. 2010 15:32

Content of Interview of website posted above. Hope this is alright to post here. Thanks, Karen

http://muliniavento.stefaniacalledda.it/?p=458&gtlang=en

"CCSVI: Interview with the Founders of the current situation Hilarescer

Corriere della Sera, Sunday, May 23, 2010

Paolo Zamboni:

Professor, where are we with clinical trials? Were diagnosed / treated new patients or is it still pending new trials? We agreed last fall not to proceed with further treatment and to close the pilot phase has produced international publications founding our beliefs, now we aim decisively in randomized controlled trials in the hope that they can demonstrate to the scientifically obvious first level, the role of treatment CCSVI in the overall management of patients with MS.
When you start testing and where? The first trial will start right in the Emilia Romagna region. The latter took charge to establish a technical committee that was studying a methodologically impeccable study design and are almost close to completion of the work and early operation phases. Other regions have already expressed their interest to participate in this process or to investigate further studies. From a financial standpoint the AISM-IMF figure of Prof. Battle has repeatedly pledged 900,000 euros to support the study of Emilia. This, together with existing regional resources and banking foundation, is sufficient to permit the proper conduct of this study.
How many patients have a waiting list? Although the study design is unattractive to patients, as fate will determine 50% of patients are not operated every day I get emails and phone calls from enthusiastic support. If we consider the contacts as requests received treatment from around the world, they add up to a few tens of thousands. Measures are provided in his hospital to enable it to better meet these demands? The owners of Ferrara University Hospital are studying a specific program with a path that allows the performance least of all the trials planned. Abroad as the trials are progressing? Started trials in several major universities. Apart from New York University - Buffalo, started the George Town of Washington, and upcoming treatment studies at MacMaster University in Canada and Boston. We have received several collaboration requests from around the world, including Imperial College London. We are already working with Harvard.

I saw that the prof. Dake, Stanford University, was stopped because of two serious adverse events, such as commenting on the fact? We have proposed to treat by simple CCSVI dilated with balloon angioplasty. We preferred to have a restenosis rate of a little 'higher, that requires you to repeat the treatment in exchange for the safety of that. Dake experienced use of stents, adapting materials used usually in the arteries. Unfortunately, the technique of stent inevitably exposed to risks of complications, which has repeatedly occurred. For this reason his program has been temporarily blocked. The enthusiasm is not the same, however, some failed, since the interview has recently released the Wall Street Journal which argues that some neurologists are unable to accept the goodness of this discovery because they can not accept it always had under eyes. Certainly, some in Italy and around the world use these episodes as I have heard happen to scare patients surreptitiously, offends his credibility: in our publications is clearly stated that current stents should not be used to treat CCSVI and we have not used, we had no complication. What should patients do now? I mean, obviously there is expectation, interest and impatience: what is the advice that you give to patients now? Patients whose disease stabilized and well controlled by current therapies can safely afford to wait with confidence the results of the trial. Studies that are built to last the shortest time possible.
What seems rather to neurologists who oppose the CCSVI? Respect their opinion and that the answers of the scientific debate can only come from the results of further, more extensive, experiments. What we do not agree to a colleague and the researcher is willing to stop further studies and research or address without the scientific rigor that the positive results of our work, regularly published and so knowable require.

Fabrizio Salvi

Doctor, she is as a neurologist at the epicenter and the key for interpretation of all of us, it is still clear on the road taken? As a good follower of St. Thomas in the early days of his relationship with Ferrara, I looked with skepticism at the monstrous CCSVI. But with an open heart, desire to understand with my brain, with his wallet empty. And what we have observed is all that we have described. I never had occasion to rejoice because all my patients had abnormalities in Doppler and venography. I just thought the good of the people to whom I dedicated my knowledge. That can not sclerotic. That is absolutely quiet. I leave to others the exaltations barricades; too much pain this disease brings with it to waste time abbarbicarcisi ...

Augustus Platforms:

Foundation tells us how did this today at the center of international attention for studies on multiple sclerosis? Hilarescere born after the first report of Professor. Zamboni and dr. Salvi, the neurologist Bellaria Hospital in Bologna, which joined him, had brought tangible benefits for multiple sclerosis involved. Among them I was there, made in July 2007. The soundness of the overall results allowed me to ask Fabio Roversi Monaco, whose love for the truth with open minds doubted not, propose to the Council of the Fondazione Cassa di Risparmio in Bologna, which he chairs to be the fourth founding member, in addition Prof. . Zamboni, Dr. Salvi and me, as necessary for the continuation of their studies.

What happened since then? The farsightedness with which the prof. Patrizio Bianchi, Rector, University of Ferrara, where it operates prof. Zamboni, only help to date in Italy, has joined us, has enabled the development of a rich network of international collaborations. This yielded a first important result of all: the conference IPU 50, the union of vascular surgeons worldwide, held last September in Monaco, the experts of vascular malformations of 47 countries voted unanimously to incorporate these occlusions in the group of malformations venous malformations accepting mode of diagnosis and treatment as outlined in the publications supported by the Foundation Hilarescere. All freely available on the website on Facebook www.fondazionehilarescere.org has formed a group of twenty people who follow you daily. We read of resistance to queries organized by pharmaceutical therapies sellers today consolidated and highly profitable. The heat from these people is very comforting. A novel form of direct democracy and the protection valuable. There was some inaccuracy in our data to comment on sites linked to pharmaceutical companies that this view has sedimented. But I think the pharmaceutical companies, after an initial, say inevitable moment of perplexity, the consolidation of ever greater depth of knowledge are only new areas of action, perhaps more effective, because richer is the framing of dell'eziopatogenesi disease. To each his work, our scientific results are available to them to produce wealth. You do not want to deny even the resistance of neurologists ... Well, the proposed change of perspective is not small and I think to understand the attitude of those who, when, cautiously criticizes both of those, and there are many who eagerly has already realized that the disease is not snatched by vascular surgeons, but is the same one aid instrument in a location where the neurologist is rightly driving.

We are helping the AISM? Recent months, has established a relationship of constructive complementarity. We were given clear guidance by prof. Battle on the desired paths of cooperation and possible outcomes which we hope to see in the near future. How are you? Like I said I am was made in July 2007 after nine years of illness. It is now three years and I'm fine, for me, progress of the disease usually only manageable in the best cases, it was discontinued. I guess there is some pressure from the sick, then. We are consolidating scientifically what came from the insights of Professor. And Mr. Zamboni. Salvi and started for the purpose of research, to create wealth through the skilled hands of Dr.. Convicts in our bodies. It is for institutions, which is commendably by the Emilia Romagna region, deepening the erga omnes. In addition, Dr.. Galeotti is known to be a champion and will therefore be necessary to establish appropriate training courses. How significantly operator dependent echodoppler the preliminary examination, although done with dedicated machines, has a severe learning curve. When I read that are beginning journeys of hope in Poland, India if there is no effective guarantee the correct application of the methodology, prayer halls in me to hurry with the validation studies in which daily tedium makers. Also conveyed by our ambassadors, there is also a reverse flow, arriving in Ferrara members of royal families or personalities in their countries as ordinary people from the United States, Canada, Australia, but now nothing can be done to Moreover, beyond the now ubiquitous CCSVI diagnosis. "
"

Karen Walker

June 21. 2010 16:04

Can anyone tell me why CCSVI research is being limited to MS? What about other neurological diseases like Alzheimers and Parkinsons? So far all that is really known is that some people with MS have blocked veins, some don't. The veins may be caused by MS, may not, may be a symptom, maybe a side effect that exacerbates the symptons... Apparently Dr Zamboni was looking for a cure for his wife - and she has MS, but it also looks like no one has looked at it in terms of any other diseases. As the procedure for checking seems to be fairly non-invasive one would think that we should be testing a lot more people.

Alicia White

June 22. 2010 21:30

I was very glad to locate this site on google. I'm really impressed!

Jordan Hydro

June 25. 2010 18:36

As a person diagnosed with MS for 31 years, I tried everything. Copaxone, Rebif and Avonnex made me horribly sick and gave me side effects that were worse than the disease. I made a decision to go to Poland and undergo the Liberation procedure.
I saw Dr. Jacek Kostecki, who is doing a research project on the subject. He currently has a research grant, which is one of the reasons I choose to go to him.

Although Karen Wlaker makes an interesting point "We all want to be treated right away, however when patients go to Poland or India for treatment and the optimum veins may not be selected, patients come back with less than optimum results. " I don't agree.

I think anyone who is currently able to and wants to be tested and have the procedure should be able to have it. Having it in your country of residence would be preferable, but until the governments and the medical communities "get their fingers out" it seems unlikely - in Canada anyway.
I do think it's important to have a variety of results in order to prove or disprove the methodology. Over the course of Dr. Zamboni's research, he fine tuned his protocol a number of times. Although his protocol is excellent, who says it's the best.
New innovations will never be found if "everyone does it the same way".
That way of thinking is too close to the "it's new, it has to be bad" neuro mentality.

We need to hear about the results, good and bad in order to learn.
Was a bad result because of something that was done or not done?, was the bad result because of the length of time the patient had MS?, where the blockage was?, the type of MS they had?, was a bad result because of the patient's unrealistic expectations?
A friend went to Poland as well. She has Secondary progressive MS and has been in a wheelchair for years. All she wanted out of this procedure was warm feet and hands. She got that, bladder control, increased strength in her hands, no cog fog - she's thrilled. Now if she would have expected to be running a marathon, she would have likely been very disappointed and possibly considered the procedure a failure.

As a side note, in speaking to a number of patients who have gone, it's surprising how many patients are doctors and the like. I spoke to 3 from Canada, 3 from the US and 5 from the UK. My GP said, when I told her I was going to have this done - "I can't advocate for it", and then she lowered her voice and said "if it was me, I'd be on the next plane."

KP Wilke

June 29. 2010 19:10

I have read a lot of comments about that topic, and Dr. Zamboni’s treatment represent a huge revolution in that field, but unfortunately it is not available in US and Canada yet. I know my friend's relative in the US who will undergo the treatment in India through Global Medical Excellence (a medical tourism company), I revised their website and they may be able to help patients:

http://gme-surgical.com/gme-procedures/item/50-liberation-treatment

I hope this link will help people in need.

FIRAS

Firas

November 6. 2010 02:51

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Air force ones

November 8. 2010 17:49

I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid-October and I am so very thankful to everyone at CCSVI Clinic for making this happen!

rebeca watson

January 10. 2011 16:18

There is a difference between responsible reporting and what Melissa Martin chose to write about the CCSVI Clinic in this article. She was in possession of factual information and documents that put the CCSVI Clinic in a favorable light but chose to withhold the information she received from the physicains and researchers at CCSVI Clinic that would have conflicted with her agenda to smear our reputation in order to sensationalize her story. At no time did anyone from the CCSVI Clinic pressure patients into going to India for the Liberation Procedure. She should have considered that the one single person who made that claim clearly had her own agenda because she was disheartened by her 'borderline' results. We simply provide information to people about our enhanced hospital stay and aftercare program should a patient decide to have the procedure. You can't pressure someone to make an important decision about their health and all of our literature clearly states that. These MS patients are more knowledgeable about the CCSVI condition and about the options for treatment than most physicians are. To suggest that they can be pressured into a decision to have the procedure done in India is ludicrous. Patients who have signed up to be part of our open-ended study on the safety and efficacy of an enhanced aftercare protocol to reduce the rate of re-stenosis versus having the procedure on an outpatient basis (which may be contributing to long term failure of the procedure) have done so to ensure that they are getting the best care possible and because they want to be part of the important work we are doing for MS patients. http://www.ccsviclinic.ca/

Lisa Chapil

July 21. 2011 09:42

“Unnecessary risks are being taken by patients seeking the liberation treatment.” says Dr. Avneesh Gupte of the CCSVI Clinic. “It has been our contention since we started doing minimally invasive venous angioplasties nearly 6 years ago that discharging patients who have had neck vein surgery on an outpatient basis is contra-indicated. We have been keeping patients hospitalized for a week to 10 days as a matter of safety and monitoring them for symptoms. Nobody who has the liberation therapy gets discharged earlier than that. During that time we do daily Doppler Ultrasounds, blood work and blood pressure monitoring among other testing. This has been the safe practice standard that we have adopted and this post-procedure monitoring over 10 days is the subject of our recent study as it relates to CCSVI for MS patients.”
Although the venous angioplasty therapy on neck veins has been done for MS patients at CCSVI Clinic only for the last 18 months it has been performed on narrow or occluded neck veins for other reasons for many years. “Where we encounter blocked neck veins resulting in a reflux of blood to the brain, we treat it as a disease,” says Gupte. “It’s not normal pathology and we have seen improved health outcomes for patients where we have relieved the condition with minimal occurrences of re-stenosis long-term. We believe that our record of safety and success is due to our post-procedure protocol because we have had to take patients back to the OR to re-treat them in that 10-day period. Otherwise some people could have run into trouble, no question.”
Calgary MS patient Maralyn Clarke died recently after being treated for CCSVI at Synergy Health Concepts of Newport Beach, California on an outpatient basis. Synergy Health Concepts discharges patients as a rule without in-clinic provisions for follow up and aftercare. Post-procedure, Mrs. Clarke was discharged, checked into a hotel, and suffered a massive bleed in the brain only hours after the procedure. Dr. Joseph Hewett of Synergy Health recently made a cross-Canada tour promoting his clinic for safe, effective treatment of CCSVI for MS patients at public forums in major Canadian cities including Calgary.
“That just couldn’t happen here, but the sooner we develop written standards and best practices for the liberation procedure and observe them in practice, the safer the MS community will be”, says Dr. Gupte. “The way it is now is just madness. Everyone seems to be taking shortcuts. We know that it is expensive to keep patients in a clinical setting over a single night much less 10 days, but it’s quite absurd to release them the same day they have the procedure. We have always believed it to be unsafe and now it has proven to be unsafe. The thing is, are Synergy Health Concepts and other clinics doing the Liberation Treatment going to be changing their aftercare methods even though they know it is unsafe to release a patient on the same day? The answer is no, even after Mrs. Clarke’s unfortunate and unnecessary death. Therefore, they are not focused on patient safety…it’s become about money only and lives are being put at risk as a result.”
Joanne Warkentin of Morden Manitoba, an MS patient who recently had both the liberation therapy and stem cell therapy at CCSVI Clinic agrees with Dr. Gupte. “Discharging patients on the same day as the procedure is
ridiculous. I was in the hospital being monitored for 12 days before we flew back. People looking for a place to have the therapy must do their homework to find better options. We found CCSVI Clinic and there’s no place on earth that’s better to go for Liberation Therapy at the moment. I have given my complete medical file from CCSVI Clinic over to my Canadian physician for review.” For more information Log on to http://ccsviclinic.ca/?p=866 OR Call on: +1 (404) 461-9560.

Robert Taylor

March 1. 2012 05:07

While US courts conduct legal battles over the ethics of stem cell research and Big Pharma shuts down clinical trials citing ‘tighter budgets’, North Americans wait for solid proof of stem cell efficacy for many disease conditions. Health organizations such as the National Cancer Institute issue continual warnings about lack of proof for stem cell therapy. National media shows like CBSs’ 60 Minutes, paid for by their advertisers that include Big Pharma, perform razor-sharp hatchet jobs on those quack clinics doing fake stem cell therapy, but in the process paint every other clinic everywhere doing stem cell research and therapy with the same brush.
In the meantime, medical institutions in other countries plough along with research from trials that not only provide good evidence on the safety of stem cells, but also their efficacy for many disease conditions with autoimmune causes. For example, the current accepted treatment strategies for MS are only known to decrease inflammation but have no effect on repairing material damage to the CNS, effectively reversing the disease. What isn’t yet accepted in the medical community is that stem cell transplantation demonstrates a new approach for supporting restoration of tissue through remyelination. Through multiple clinical trials that have already proceeded to phase III, it has been well-established that mesenchymal stem cells moderate responses of the disease and stimulate repair of the central nervous system. In these studies, adult autologous mesenchymal stem cells have not only been safely administered to MS patients but have proven effective as a potential therapy for MS. Approved Clinical Trials involving small numbers of patients have occurred for the past half decade in medical centers outside of North America. As a result, various medical treatment centers have already derived protocols for extraction, culture, and treatment of MS patients with autologous stem cells. A review of popular medical journals actually reveals a widespread consensus on the efficacy of mesenchymal stem cell transplantation as a therapy for MS patients.
After 18 months of treating MS patients, CCSVI Clinic is well along with its program. “Success means different things to different people, but I’d say we’ve had much more than we could have hoped for when we first started.” says Dr. Avneesh Gupte, Neurosurgeon with CCSVI Clinic. “For the past year we’ve been adding autologous mesenchymal stem cell transplantation to the liberation therapy procedure and that’s when we really started to notice a significant change in patient outcomes”. Autologous Mesenchymal stem cell transplantation (AMSCT) means that the stem cells are taken from the patient’s own body and are cultured prior to transplantation at various times over an extended period. With the patient as the donor, there is no risk of transplantation leading to cancer as opposed to the risks of transplanting embryonic stem cells. AMSCT is now regularly used in North America for the treatment of Hodgkin’s lymphoma and non-Hodgkin’s lymphoma as well as other diseases with remarkable results including cure for many patients. “If it works for some diseases, is safe and well-tolerated by the patient, then why not other diseases? We believe that Multiple Sclerosis can now be added to that list.” says Gupte.
In the past four years Gupte has performed over 1500 autologous stem cell transplantations for many types of neuro-degenerative diseases, including MS, cerebral palsy, ALS, Crohn’s Disease, Huntington’s, and Parkinson’s among others.
For the past year, CCSVI Clinic has not done the ‘liberation therapy’ for MS alone without the combined stem cell transplantation in the same 12-day protocol sequence. “Once we saw how dramatic and long-lasting the outcomes were with the addition of the stem cells, it didn’t make sense to do it any other way.” says Gupte. Most MS patients would agree. Lawrence Vermeersch of Kenora, Canada is convinced that it’s the stem cells that are continuing to make the difference in his recovery. “I’m thinking it will take a year to full recovery, but I’m continuing to improve every day.”
Jessica Davis, diagnosed with MS in 2003, of Somerset, UK agrees: “I have my life back thanks to CCSVI Clinic and it’s the best thing I ever did for myself. They weren’t easy to find but I did my homework.” She continues: “I had to be my own advocate for both liberation therapy and the stem cells because I got no help from my own neurologist. From the day I was diagnosed, my MS was aggressive. I didn’t have much time to take action before I would get to the point where just getting out of the flat would become impossible. I was using a cane and so tired all the time. After the 12 days at CCSVI Clinic, the first thing that cleared up was the head fog and my (incontinence) and the rest has come back over the past six months. I am working again and I consider myself cured.”
“These are typical stories for all types of neuro-degenerative diseases we are treating through CCSVI Clinic. At least with MS we are seeing significant improvement in many patients and I believe this trend of outcomes will continue” says Gupte. “We have also had some significantly positive outcomes with ALS and (cerebral) palsy. With the results we have seen in the past year, I think that the promise of stem cells is coming closer to matching the reality.” For more details visit http://ccsviclinic.ca/

Melissa Lessie

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