Kuwait Wastes Money on Zamboni’s “CCSVI” and “Liberation” Procedure for MS
Posted by Colin Rose on April 10, 2010
Avis Favaro of CTVglobemedia is at it again. This time she has decided to promote the earth-shaking development that a country with a less than profound understanding of the scientific method and lots of money to spend, like Kuwait, has decided to treat all of its citizens with MS with Zamboni’s “liberation” procedure.
Tariq Sinan, a radiologist who convinced the Kuwaiti government to fund this nonsense, stands to keep himself in business for many years, and is as willfully ignorant of basic cardiovascular physiology and the scientific method as Paolo Zamboni. Of course Kuwait can afford to waste money on a totally unproven, scientifically absurd treatment. Here in Quebec the government is raising our taxes dramatically to pay for a “health contribution” which I hope never goes towards the hoax of “liberation” treatment. See our previous blog on “CCSVI” and “liberation.” for the junk science behind it.
BTW, that “partially blocked vein” in the photo accompanying the article looks like a perfectly normal internal jugular vein. One can clearly see that catheter outside of the presumed blockage and dye streaming along the wall of the vein. Dilating this normal vein to treat anything is charlatanry.
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April 9, 2010
Avis Favaro, CTV News
Kuwait has become the first country in the world to offer a controversial treatment to all its patients with multiple sclerosis who have blocked veins in their necks.
CTV News has confirmed that Kuwait’s minister of health has given interventional radiologists in the country the go-ahead to use the state-financed medical system to begin treating patients who have blocked veins and abnormal blood flow in their necks.
According to a theory proposed by University of Ferrara’s Dr. Paolo Zamboni in Italy, and first broadcast on CTV’s W5 last November, many patients with MS have blocked or narrowed veins in their necks and chests. He calls the condition CCSVI, or chronic cerebrospinal venous insufficiency.
He theorizes that the blockage prevents blood from draining properly, sending it back to their brain, a problem that could contribute to the immune response that marks MS.
The theory has generated a lot of interest in Kuwait, which has high rates of MS, particularly among women.
In a telephone interview with CTV, Dr. Tariq Sinan, an interventional radiologist and an associate professor at the Department of Radiology in the Faculty of Medicine at Kuwait University says the health ministry will allow radiologists to begin treating MS patients who have CCSVI, starting next week, as part of an ongoing study.
The Kuwait News Agency KUNA also reported the development, quoting the chairman of the standing committee for co-ordination of medical research at the ministry, Dr. Youssof Al-Nesf, as saying: “The presentation meets the legal, moral and scientific criterions specified by concerned organizations, including the World Health Organization.”
The decision is based on research by a team headed by Sinan who studied 12 MS patients in March. All of them had CCSVI and were offered what Zamboni has dubbed the Liberation Treatment. The treatment is a vein version of angioplasty, in which a small balloon is inserted into a blocked vein to force it open.
(No stents were used in the procedures, a practice some doctors around the world have tried and one that Dr. Zamboni does not endorse.)
Sinan says all of the patients saw improvements in their MS symptoms, with some noticing “dramatic” results.
“On one day, on March 3, we did three patients. Two had dramatic improvements on the table and started crying because they couldn’t believe what they were feeling,” Sinan reported.
He says patients with more severe MS reported fewer improvements, but did notice feeling less stiffness and more energy. Those with less severe disease, reported up to 90 per cent improvements in their fatigue and numbness in their hands and leg.
“In one case, the patient couldn’t see from one eye and started to be able to see,” Sinan reported.
Sinan said he’s confident the results he saw were not the result of the “placebo effect,” a phenomenon in which patients fool themselves into feeling better by an otherwise ineffective treatment.
“If this is a placebo effect and I have MS, I would want this placebo effect,” Sinan said.
“It is amazing the kind of improvements the patients say they have. It cannot all be attributed to placebo. Not being able to see and then being able to see, better bladder control, end of foot drop — that cannot be placebo.”
Last week, Dr. Sinan says a group of neurologists petitioned the country’s ministry of health to stop the treatments. Their concerns – shared by other MS specialists around the world — is that the link between blocked veins and MS has not been proven, and that the treatment could be dangerous. They have called for more studies.
But after review, and submissions from physicians and patients, the decision was to allow the treatments, which will be covered by the state-financed medical system.
The procedure will not be performed to treat MS per se but to treat only “improper blood flow” in the veins.
“So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don’t have to talk about MS or the link to MS,” said Sinan.
Patients will be warned that the procedure is experimental, and the potential risks of venoplasty will be detailed in consent forms. Patients who agree to treatment will be part of an ongoing study that will be done in cooperation with a Kuwait neurologist.
The team will use ultrasounds and magnetic resonance venograms to scan the neck veins, as well as MRIs to track changes in the brain, including the appearance of MS-related lesions.
Doctors hope to treat 10 Kuwaiti patients a week, beginning next week.
Panaceia or Hygeia 
chrishadms said
Yes, please ignore the HUNDEREDS, literally HUNDREDS of people with RRMS, RPMS, SPMS, and PPMS who are now getting better.
Let’s talk about Loobie from Ohio who had SPMS and 6 months out from surgery he can do jumping jacks again.
Lets talk about Marie with SPMS who can walk again instead of using a rollater.
Let’s talk about Magoo who has PPMS and dropped a EDSS point, can see again, and has lesion healing on MRI for the first time in his life.
Let’s talk about Mel with RRMS, who now goes sun tanning for hours at a time in Texas, and runs 5 miles a day, when before the surgery she slept through her weekends.
Your an idiot Colin.
Colin Rose said
All anecdotal. I could find just as many for acupuncture or homeopathy “cures”.
mamadawnna said
All Anecdotal? Then how do you explain that the MS patients who have been “Liberated” show now new lesions in their Brains months and some a year after the procedure using MRI?
Colin Rose said
Many MS patients show no new lesions over a year, “liberation” or not. That is why a controlled, blinded, sham-operated trial is required before any more procedures are done outside of a trial. But first someone has to explain how to diagnose “CCSVI”. Zamboni and his acolytes have never written down in scientifically acceptable format how to make this diagnosis and how to quantify it. All venograms I have seen in patients with presumed “CCSVI” have been normal and upstream venous pressures are normal. So, if a venogram or pressure measurements don’t diagnose it, what does? It seems one has to do a transcranial doppler, a highly inaccurate technique, the images from which are can only be interpreted by Zamboni in light of the patients diagnosis. If the diagnosis is not know then even Zivadinov, who presumably was privy to the occult art, finds “CCSVI” in 23% of normal people.
lilsis76 said
Dr. Rose,
I understand and appreciate your skepticism in regards to mid-vessel stenosis, as it offers healthy perspective and the opportunity for people to come to their own conclusions based on information from both ends of the spectrum. But many people have specific anatomical abnormlities: malformed internal jugular vein valves, venous aneurisms, missing veins or venous plexus, occlusion due the presence of septum or web-like structures to name a few. According to the Vascular Disease Foundation, congenital vascular malformations are present in only 1% of all births, and venous malformations represent half of those, yet they have been proven to be present in over 50% of one particular population, those suffering from MS.
Can you share your thoughts on these pieces of information?
Colin Rose said
There are congenital vascular malformations but few cause any serious disease. The most serious are perhaps the arteriovenous malformations in the brain that are not associated with MS.
http://en.wikipedia.org/wiki/Arteriovenous_malformation
The venous blockages in the internal jugular veins reported by Zamboni are artifacts of his methods of observation; they don’t exist. Zamboni and Simka see what they want to see, knowing the patient’s diagnosis. Occlusion of an internal jugular vein is a serious medical problem, none of which include MS, caused thrombosis or by chronic catheterization of the internal jugular vein for constant infusion of drugs or nutrients. Zamboni’s claim of the existence of bilateral internal jugular vein occlusions is pure fantasy; it would be incompatible with life.
dakota08 said
for kuwait, there has been major protests and patients fighting over their ‘right’ to this treatment. they believe that its their right to live and that they should get a right to choose this controversial treatment. so whats wrong with having these patients try the treatment in a clinical trial and see if it works? i mean there should be a link because studies have shown that and the patients have all gotten better, and i don’t think you can blame it all on placebo effect.they say that with their disease they are already degenerating, so risks are somewhat shifted? other than a possible brain clot that can happen in many risky surgeries, what other risks are there? i don’t know what to think about it all, i mean MS-degeneration of the myelin sheath, what that has to do with occluded veins in the neck?
by no means am I saying that this is the miracle cure people are portraying it to be, but if its relieving symptoms somehow, why not give it more attention?
Colin Rose said
That “liberation” would have an instantaneous effect on chronic symptoms, as many have reported, is absurd. The self-reported benefits are all on highly subjective symptoms very susceptible to the placebo effect. You are right; myelin degeneration has nothing to do with large veins, even if they did have blockages, which they don’t.
beveikrimtas said
I have mixed feelings about Kuwait proposals.
From one side there will be a big clinical experiment which could clarify a lot of points on CCSVI and MS, and it could be done pretty fast, say in several months period.
From another side, the thought, that this will be made in highly unethical manner, sends chills down my spine. We haven’t seen such ‘clinical trials’ since WW2 Nazi’s concentration camps where various medical experiments took place. [Note that these experiments were quite unique and extremely valuable, because many things are impossible to reproduce in animal studies.]
In WW2 camps case the ‘performers’ truly believed in their humanitarian goals, and the people (prisoners) had actually no choice to refuse, mostly because of promise to stay alive after, and that is a good motivation.
In Kuwait case we see the same sort of attitude from ‘performers’ side, but people here are simply misled, misinformed. They are ‘prisoners’ of MS, they are desperate and expecting miracles, therefore they willingly ‘take their chances’.
Now tell me, which one experiment is more ethical? How do they differ?
The results from Nazi’s experiments boosted postwar medicine, esp. intensive care. They definitely saved a lot of lives, millions of lives, and had stimulated overall progress in almost every major medical field. [BTW, USA benefited the most, because they secretly acquired the results and protocols, well, the biggest part of it.]
The outcome from Kuwait experiment would be unlike. It is quite possible that veins dilatation could provide temporarily symptoms improvement in 20%-30% of RRMS. Other ‘well-being’ improvement would be due placebo effect. [Maybe you remember the era before MRI, when surgeons did ‘open up’ the cancer, recognized that it is inoperable, closed without removal, but some patients felt better (!) even for months, ask old surgeons-oncologists about such cases.]
Bad part is that every single MS patient undertaking this operation will be under definite risk of IJV damage during the procedure (esp. if done repeatedly or for extended period of time), not even talking about other potential surgical complications. Internal jugular valve damage, read – insufficiency, is not a good or healthy thing even without brain pathology. Let’s remind you that MS ‘liberators’ claim that pathological reflux through IJV is the cause of MS (?) How that fits the bill?
Could be this Kuwait experiment useful for MS science – yes, but the price tag is too heavy, and who knows what the big (actually the biggest) part of these patients, the part who will be not better but worse (experience more rapid MS progress) decides to do with the ‘performers’?
Nazi medical ‘scientists’ were hanged after, what happens with MS ‘liberators’ then?
Colin Rose said
I don`t think there is much similarity between the Nazi human “experiments” and “liberation” treatment in Kuwait. The Nazi tortured healthy people mostly to test hare-brained theories of Aryan superiority; no significant data were obtained that could not have been obtained in ethical ways. These atrocities did NOT save millions of lives.
The Kuwait programme is not an experiment. Sinan is already convinced that “liberation” is a beneficial treatment for MS bassed on a few anecdotal cases of symptomatic improvement that can be completely attributed to the placebo effect. There will be no control group, no randomization, no blinding. All Kuwaiti MS patients will get it if they want it. Like the Nazi atrocities, no useful scientific data will be obtained. Sinan will make a mint being paid from Kuwaiti oil revenue and retire early. That will be the only good result. No MS will be cured and a few patients may die from the procedure. He can get away with this unethical behaviour in Kuwait where there is no tradition of scientific enquiry but could not in Canada or the US.
beveikrimtas said
I had a chance to read some of the data (of Nazi experiments) in early 80-ties, even then these facts were extremely hard to obtain, now it would be virtually impossible task.
There is no way to reproduce such experiments nowadays, I remember my impression on the scale, imagine that everyday various research were performed on thousands of prisoners, it was huge. Not only Arian theories were tested, for example Dr. Mengele was obsessed with twins study only, and when he got an access to multimillion population (means thousands of twins) he went for it. I was surprised to learn from eye-witnesses memories (from Jewish book on Holocaust) that he was very polite, mild-mannered, never-raised-voice man. When I’ve met a prominent US scientist on twin’s research in mid 90-ties (it was totally unofficial meeting), and, in a private conversation, he confirmed the value of Mengele research.
Well, it is all in the past, maybe one day there will be a historical research done on this matter.
BTW, the practice of using inmates for medical research was widespread, even in US it was stopped only in 70-ties.
I agree with your point on Kuwait vascular surgeons motives: plenty of mint and a perspective to retire early sounds very attractive.
chiefumtaga said
It is interesting on the photograph accompanying the article that the area treated with angioplasty is cut off. The “post” image field of view does not match the anotomical area on the “pre”. Makes it hard to assess what is actually going on, makes me wonder if there is less to this procedure than meets (or does not) the eye.
costumenastional said
i am so glad someone else noticed…
check out my blog for UNCUT images not to mention the whole cyber space which is full of them.
mamadawnna said
I’m a Canadian and acknowledge that I don’t know the standards for journalistic standards in Kuwait, but here’s the proof that money towards CCSVI testing/treatment is NOT a waste of money.
http://www.ccsvikuwait.com/Details.aspx?d=4
Check your facts and ego’s at the door. This treatment is helping your citizens and others who are willing to “pay” for treatment… where is the waste here?
Dawn Skinner
Brantford, ON
Canada
Colin Rose said
First of all, legitimate scientific research is not published first on the web; it is written up in proper scientific form and submitted to peer-reviewed journals so that the methods used to arrive at the conclusion can be assessed.
Thee is no report on how this study was done. Was it rigorously blinded so those performing the tests for “CCSVI” had no hint of the diagnosis?
In order legitimize “liberation” one has to do a blinded randomized sham operated trial with objective endpoints. The Kuwait study as described has failed to do so.
The data as described cannot be interpreted. I will give my judgement when I see a paper from Kuwait on “CCSVI” and “liberation” published in a high quality peer-reviewed journal.
I repeat, Kuwait is wasting it’s money unless it performs a proper scientific study of this diagnosis and treatment.
mamadawnna said
Kuwait is making thousands of dollars off suffering Canadian’s willing to pay for the cost of treatment. Do you have MS? If you did, you would be willing to pay whatever it take to make it better.
This is not a free ride… now waste… Canadians paying cash for services to treat MS are exempting the cost to Kuwaitis.
Would you rather have your people suffer or Canadian’s and the world pay cash for their treatment?
Your argument is moot… what ever the cost is… it’s being paid for by forgieners…. what’s your problem with that? do you work for a pharmacy?
Colin Rose said
Regardless of who is spending money on this extraordinary treatment it is highly unethical for any doctor to be performing and charging for a treatment that has never been proven to be safe and effective. Until it is proven so, all patients must be enrolled in a properly conducted scientific trial of the treatment.
I have no connection with any drug company. If you read the rest of this blog you will see I am highly critical of drug companies and doctors who take money from them.
costumenastional said
this is for you
http://www.fightforccsvi.blogspot.com
Colin Rose said
Those look like perfectly normal veins to me. One can inject dye at various speeds and various locations to show just about any flow pattern one wishes in a low pressure system like the veins. He says in one caption “like Dr. Sclafani says it is probably a matter of flow and not pressure.” Now how could a venous blockage cause any damage without an increase in upstream pressure and secondarily reduced cerebral blood flow? No measurements were made of either cerebral flow or venous pressure, so no conclusions can be drawn concerning either variable. Zamboni resorts to an unquantifiable, very transient phenomenon he calls “reflux” that only he can see to explain how “CCSVI” causes MS. The Sofia group are doing pseudoscience. They are showing contrived images presented to a patient who desperately wants to believe there is a magical cure for his debilitating disease and charging for “liberation” treatment. Professor Grozdinski and Dr Petrov are acting highly unethically and contrary to the Hippocratic Oath.
costumenastional said
While i strongly agree with you that CCSVI might be a bullshit (i ve said it a million times already) i feel obligated to push to the right direction whatsoever. And this is only scientific research that is currenty ongoing. Surely its not your blogs, i know that much.
I ve seen things that simply cannot be coinsidental but of course i wont take the time to tell you. I only wish that every MS patient will make his own mind until the research come through with some valid data. And you are in the way. Or should i say you were, cause noone seems to really care about you any more.
Grozdinski and Petrov charged me a special VERY low price upon my request. They operate on salary.
Sclafani told me that those pics and captions are wrong and i changed them. But then again, everything seem normal to you. No need to mention that you know better than ALL of those scientists who think that Zamboni’s theory is at least interesting. Of course you do.
You of all people know better that the vessels that originaly drain blood from the brain and spine are VERY VERY small, practicaly invinsible and any kind of obstacle in the main drainage pathways could result in microhemorage in the long term. But you insist of talking about pressure and such like it s a matter of simple plumming. Thank God you cannot convince ANYONE no more.
Noone has taken advantage of me. All doctors involved with CCSVI are proven to be WONDERFUL human beings who simply try to help.
People, do not trust this man. The fact that he acts like he knows something noone else on the planet doesnt know yet, speaks for itself. See for yourselves. Ballon angioplasty carries MINIMAL risks. Way less than the poisons they are trying to sell to us.
See my blog for a more “educated” answer to this person.
costumenastional said
i should also add that all thisisms.com (and hopefuly many mnay more) have already read it months ago. check it out. there is an open letter exclusively written for you.
costumenastional said
The link for the study in Kuwait.
http://www.ccsvikuwait.com/Details.aspx?d=4
garhildenbrand said
Gee whiz, Colin, don’t you read the scientific literature at all? One would think scholarship to be the very minimum one might set about prior to holding oneself out as an authority on Zamboni, et al. I have personally read 26 of the peer-reviewed articles from respected journals that trace the development and maturation of Zamboni’s CCSVI hypothesis. How many have you read? Never mind. It is obvious that you have not.
Colin Rose said
Good for you. I have read most of that literature too. I have yet to come across one report of a randomized controlled trial pubished in any journal proving that “CCSVI” exists or that “liberation” therapy improves MS symptoms or reduces plaques.
moreconcerned said
So I take it you’re a doctor with a vast knowledge of the vascular system and human physiology?
Colin Rose said
At least as much as Zamboni and probably more.
moreconcerned said
I meant that towards garhildenbrand, I know your a doctor Dr. Rose.
gulfwarsyndrome said
Is there a chance that stenting veins would improve cognitive deficits based on a larger volume of deoxygenated blood being removed from the brain? I understand it’s a closed system, but it may allow more nitric oxide, immune cells and other hydrophobic molecules to be processed into the circulation outside the BBB. Vasodilation improves athletic performance to a small degree, is not there an opportunity for a palliative effect without affecting the disease process?
I may be tying in illusory correlation after another… here’s to sham surgeries!
uprightposturedoctor said
The problem is in using ultrsound exams of extacranial veins to determine venous drainage in the brain. Ultrasound is subject to errors and using extracranial veins to determine intracranial events is an indirect assesment. Phase contrast upright MR angiograms of the brain on the other hand are direct and very accurate.
Even if it isn’t one hundred percent effective and even if the veins eventually become re-stenosed, the liberation procedure appears to be working remarkably well. It may, however, be working for other reasons. While I agree with Zamboni on the theory of CCSVI, I disagree with him that it is due to stenosis in distant jugular and thoracic veins. I belive the CCSVI is due to back pressure against the valveless vertebral veins, which humans use for upright posture. For further information on CCSVI please visit my website at uprightdoctor.wordpress.com.
tcvox said
An open letter from the Kuwait CCSVI team:
Regarding
[S10.007] Endovascular Treatment of Chronic Cerebro-Spinal Venous Insufficiency in Multiple Sclerosis: Preliminary Data from a Prospective Open-Label Study
Raed Alroughani, Sulaiman Al-Khashan, Shekhar Lamdhade, Kuwait
Result Content View
http://www.abstracts2view.com/aan/view.php?nu=AAN12L_S10_007&terms
We would like to bring to your attention that the abstract above was submitted by Dr. Raed Alroughani from Kuwait and is fraudulant and not legal due to the following reasons:-
·Dr. Raed Alroughani submitted the paper without approval of the national research committee from ministry of health of Kuwait.
Also without approval of the primary investigator Dr Tareq Sinan.
Dr. Raed Alroughani was invited the study late and not the main neurologist involved but Dr. Sulaiman Al-Khashan is the main neurologist involved in the study.
·Dr. Raed Alroughani did not follow up all patients because was biased toward not having the procedure and was in favor of medical therapy of MS.
He only saw 25 % of patients in his clinic for follow up.
Dr. Raed Alroughani never met with the group investigators ( Dr. Tariq Sinan, Dr. Hussain Safar, Dr. Muzaini and Dr. Sluiman alkhashan, and the ethical and the research committee from the ministry of health) to discuss any results.
Dr. Raed Alroughani send the abstract without even receiving approval of his colleague neurologist Dr. Sulaiman Al-Khashan.
Dr. Raed Alroughani was objecting from the start regarding the CCSVI procedure from the beginning and he had in his mind a plan to stop the procedure early and to write against it
This abstract is fraudulant and immoral .
For your information, all the committee agreed that we should continue to follow the patients for 2 years due to the fact this neurologist was not willing to follow up these patients properly.
I think this matter should be raised to the higher committee of the American Academy of Neurology.
Thank you,
Dr. Hussein Safar
Consultant Vascular surgeon
Kuwait