University of Maryland solicits donations from desperate MS patients to support Zamboni’s “CCSVI” and “liberation” scam
Posted by Colin Rose on December 5, 2010
A Toilet Money Award to the University of Maryland
The temptation was too great. American and Canadian professional fund raisers and catheter-wielding interventional radiologists around the world have been drooling over the ability of foreign clinics in places like India, Poland, Mexicao, Costa Rica, Bulgaria and Egypt to rake in hundreds of thousands of dollars per week flogging the Zamboni “CCSVI” and “liberation” scam for “treating” MS patients. So fund raisers at the University of Maryland, following the example of those at the University of British Columbia, convinced or, more likely, were convinced by Dr. Ziv Haskal, an interventional radiologist who stands to make many millions of dollars doing “liberation”, to ride Zamboni’s “CCSVI” hysteria to fatten the endowment of the University while giving legitimacy to the scam. UBC is using the scam to raise funds for a new MRI machine that will probably be used for other purposes than trying to diagnose “CCSVI”. But U of M is using the bait of implying that Haskal will actually be doing “liberation”. If so, this will be the first university-sanctioned use of “liberation” other than Zamboni’s University of Ferrara. Neither university is in the top 100 of the world’s universities. Ferrara isn’t even in the top 500.
Perhaps we should not be too surprised. After all, only 40% of the US population accepts the theory of evolution as the explanation for the variety of life on the planet, the most important scientific concept in history; presumably, the majority, 60%, believe in some form of creation or “intelligent design”. If one can believe the latter, one should have no reservations about accepting that internal jugular veins can cause damage to the brain without raising intracranial pressure and even if it did raise intracranial pressure could cause damage selectively to the slowly-metabolizing, myelin-producing cell of the white matter BEFORE damaging the much more sensitive rapidly-metabolizing cells of the grey matter of the brain. Interventional radiology, while requiring a certain degree of manual dexterity, certainly doesn’t require more than a superficial knowledge of physiology and metabolism and doesn’t preclude a belief in creation.
“CCSVI” is junk science and its “treatment” by “liberation”, dilating presumably blocked neck veins to “cure” MS, is one of the greatest surgical hoaxes in medical history. Performing any medical procedure with no scientific evidence of benefit but with potential risk is grossly unprofessional and contrary to the Hippocratic Oath.
“CCSVI” is the crack cocaine of surgical scams. It has been estimated that at least three BILLION dollars will be spent next year by MS patients pursuing the Zamboni’s mirage, dwarfing other recent surgical scams like “bariatric” surgery.
Panaceia or Hygeia 
chrishadms said
So let me ask you…what exactly have you done besides this website to prove Zamboni wrong besides bring up info that is neither here nor there when talking about MS.
How is it Barb Ferral, a woman with PPMS who was bed bound for the last 5 years, and couldn’t talk,is now sitting up in a chair talking again? Explain how all that was done was removing a 100% constriction in her left jug and 95% constriction in her right jug.
MS is far to multifaceted to say CCSVI is wrong. For some people it is dead on. For others it isn’t. The simple fact is there are 3 types of MS, RRMS, SPMS, and PPMS – all of which have a different mechanism of action. Colin, you have no clue what causes MS, but there are people that are over 1 year out from this procedure and doing great with no MS progression since they have been opened up.
You just bashing people shows that you know nothing, and are like the Republican party in the US -just say no to get on TV and be popular…no real reason otherwise. I hope your hits have gone up because of this. My neuro of 5 years, with 30 years experience with the Rocky Mountain MS Center and Johns Hopkins. He knows you and asks me if I have seen your blog when I see him.
We have a good laugh at you…an old man who is so pissed at his life and the world he takes it out on others.
chiefumtaga said
It looks like the University of Maryland is putting the cart before the horse, there are no independently replicated studies that have shown the physical reality of CCSVI. Interestingly, Colby Cosh of Maclean’s proposed a simple test(MS Liberation:the test I’d like to see. August 11, 2010), get venous images of 50 patients of MS patients and get venous images of 50 healthy controls, mix them up and then have Dr. Zamboni assess the venous images and tell the evaluators which images he thinks belong to which group. Ooops, I think somebody already ran a similar test, Dr. Wattjes in the Journal of Neurology, Neurosurgery and Psychology (October 27, 2010), had 2 radiologists (blinded as to which images belonged to the MS or control group) evaluate such images and essentially could not tell the difference between the two groups. So again the burden of proof is on the advocates of CCSVI, please show us independent researchers (using blinded methodology) that can correctly match venous images from MS patients and healthy controls . The story on Barbara Ferrall is interesting , on the Barb’s ‘last hope’ page she is described as being able to move 2 fingers 2 weeks after her treatment and her laboured breathing is gone, but that could be partly thanks to the morphine, which she no longer takes, according to her husband Patrick.Barbara also states she still is in a lot of pain. This does not sound as dramatic as the story Chrishadms passed on to us. Is there any missing information on Mrs. Ferrall’s miraculous recovery that can be sourced? Or is there some internet embellishment (with a not so hidden agenda) being used to sell “Liberation Therapy”?
chiefumtaga said
Allow me to correct Barbara’s surname,it is FARRELL.
therealboobear said
Yet these standards are not applied to the disease itself.
MS is classified as autoimmune, though the disease does not meet all autoimmune criteria. The disease itself is very hard to even diagnose. The disease takes a far more aggressive course in some rather than others- no one has been able to definitively establish why that is the case. The disease occurs in women far more often than in men, occurs in the 30s and 40s for the most part, and again, no one really knows why.
So despite all of these unknowns, the “burden of proof” is on CCSVI advocates?
If I took 50 T1 and T2 weighted MRI scans of confirmed MS patients and presented those images to a group of qualified neurologists, could those neurologists identify which ones were associated with patients that had current active lesions? Nope. Because you need to have those images enhanced with gladonium to identify those lesions that are active. Not only that, but the number, type and locations of lesions are not solid indicators of disease progression, either. So those neuros would have no idea what they were dealing with when the MRI images are all they have in which to make a conclusion, even as experts in their field.
That’s why “venous images” won’t do the trick. You need to do the right exam under the right protocol and see what you find. Dr. Zamboni has never said to cease research- in fact, quite the opposite. But at least follow the protocol to eliminate variables (which I believe is proper scientific practice).
In the initial Buffalo study, one of the healthy controls was identified with CCSVI. She was diagnosed with MS six months later. Is that like a reverse placebo? Do we really believe that to be the case?
chrishadms said
Don’t even bother. There is a reason I didn’t respond to the posts back to my comment. This is “junk science” and there is no reason to look into it. That is why it is this guys favorite topic. It makes him popular to play devils advocate.
Your better off reading the medical science either supporting or disagreeing with the science of CCSVI than to listen to this guy. All he does is frustrates me, considering I know quite a few success stories with CCSVI, (but I had Revimmune and it worked for me). Someone who sits in the back office and posts a story to get people mad just doesn’t do it for me.
Good find about the pre MS CCSVI link but good ‘ol Colin will tear to hell the coincidence. He hates stories about people doing great more than a year out. Next he will brow beat you into submission about why this is “junk science.”
You can’t argue with a fool. There is their side, and their side. You will never win.
Save your free thinking for somewhere other than here.
therealboobear said
Chrishadms, I read your blog with interest. It’s a honor to “meet” you!
I know there is no convincing the skeptics. But others genuinely want to learn more. I don’t hope to convince anyone to do anything else other than research and find the answers for themselves, just as I did.
The body has an incredible ability to heal itself when presented with the opportunity to do so, I believe. I simply wanted to give my body that chance- and I am forever glad that I did. EDSS from 3 to 0.
chiefumtaga said
‘That’s why “venous images” won’t do the trick.’
The whole crux of Dr. Zamboni’s CCSVI theory depends on the existence of blockages (or stenosis) in the venous anatomy of the cerebral circulation. Thus the balance of current studies showing no evidence for CCSVI and its connection to MS (again referring to the research by Wattjes, Sundstrom). And as a non-Doctor (unlike the vascular surgeon Dr. Paolo Zamboni or the geologist Dr. Ashton Embry) I assume most imaging modalities that can show the vascular anatomy can also be used to show the pathology in venous anatomy that Dr. Zamboni states is present, hence my criteria for using “venous images”. Another reason I currently doubt the physical existence of CCSVI is the requirement for a special protocol (that Dr. Zamboni has to train physicians on) to visualize these stenotic vessels. I know of no other vascular pathology that requires such an unusual methodology with a special protocol. For example, there are several methods to visualize carotid arteries (ultrasound, magnetic resonance imaging, computed tomography and catheter angiography) similarly deep vein thrombosis(DVT) can be visualized using ultrasound or venous angiography, recently in the Current Protocols in Magnetic Resonance Imaging (May 2002) magnetic resonance angiography could be used for DVT.
In regards to the Buffalo study, I know there was an initial press release in Feb. 2010 announcing preliminary results, but I have not seen a formal paper yet(at least not when looking in pubmed).
I agree with Dr. Zamboni, more research is needed, I think more research is needed to prove the physical reality of CCSVI before going onto risky clinical trials. That is why I think the University of Maryland is putting the cart before the horse, provide the evidence for existence of the pathology.
therealboobear said
But we know that stenosis of the internal jugular veins exists, Chiefumtaga, for a number of conditions. There are numerous papers that highlight stenosis in one or both IJV’s, so what do we achieve by asking Zamboni to look at images and identify the abnormality? The difference with CCSVI is that the stenosis is chronic versus temporary, with the blood reflux into the brain.
The real issue is the prevalence of CCSVI to MS patients versus the norm. Whether CCSVI is a cause or an effect of MS is not yet known; however, treatment for any side effect of MS is warranted today and CCSVI should not be treated differently.
jjll411 said
You guys can duke it out all you want, but three months post CCSVI venoplasty procedure, here are results of my wife’s treatment.
Chronic fatigue: GONE
Loss of stamina: GONE
Numbness in extremities: GONE
Tingling in face and extremities: GONE
Chest pain – ‘MS hug’: GONE
Urinary incontinence: GONE
Loss of sexual sensitivity: GONE
Inability to curl her toes: GONE
Ability to dance in her stiletto heels: RESTORED
We’re pleased with the results.
This may not be ‘definitively clinically proven’
but it worked for her.
If this is ‘placebo effect’ we’ll take it.
chrishadms said
Don’t tell Colin that kind of stuff. It may be too much for him. We can only hope it is and he will quit bashing this until he understands MS and the venous system and the relationship between the two. Unfortunately he seems to think he is the one person in the world who does understand it fully so he can make condescending statements with 100% accuracy.
Yeah BS.
Congrats on your successful treatment!! I hope it keeps on going so positive for you!! Take it and run!!
jjll411 said
Thanks for the words of encouragement Chris.
I am reminded that Galileo’s theories were dismissed by those who THOUGHT that they had the answers – as were those who dismissed the theory of Helicobacter as cause for stomach ulcers. Some people just don’t pay attention to history and are very slow on the uptake for new ideas and solutions.
beveikrimtas said
Maybe you are unaware that mortality rate for dialysis care in US is 1:5.
This is a high rate, but life threatening condition requires life saving solutions at any cost. When patients on long-term hemodialysis literally ‘run out’ of access, so this can be a fatal problem, without dialysis patients die in a few days.
Seeking ensure the procedure IRs use CVC (Central Venous Catheter) which is inserted into a large vein usually the vena cava, via the internal jugular vein or the femoral vein.
The infection is a common issue, but venous stenosis is more serious problem with catheter access. Remember, the catheter is a foreign body (made of steel) in the vein and provokes an inflammatory reaction in the vein wall. This results in scarring and narrowing of the vein (via intimal hyperplasia), often to the point of total occlusion.
An access though femoral veins usually is the first option, when they became obliterated (closed as a result of damage during catheterization) docs go for jugulars. The same story, usually the one got obliterated (CCSVI!!!), and it is not recommended to “close” both of them. Then the grafts (or arterio-venous fistulas – AV fistulas) come into play providing up to few years of access.
So far no problems with brain’s white matter or MS onset in long-term dialyzed patents with catheterization induced “CCSVI” (damaged jugulars both sides, one usually obliterated) were reported.
IRs consider it is safe to ligate one of jugulars and they do that in hundreds for treatment of tinnitus, tumors, traumas, etc. every single year for decades. So far no brain problems were reported.
BTW, I’ve heard that one of IRs who became big in CCSVI movement did that to his wife to stop the ‘ringing in the ear’ saying ‘it is enough to have only one jug’, but now he is chasing subtle “refluxes” or “stenoses” in jugs, isn’t this amazing?.
chrishadms said
I am just shocked Colin hasn’t been on here to bash the living hell out of us for being positive.
japentz said
I’m truly interested in knowing why someone who claims to somehow work for McGill University is going way out of his way to trash the CCSVI hypothesis. I am a patient of Dr. Ziv Haskal, whose credentials are by far better than that of Colin Rose. I suppose Mr. Rose is a mole or shill for big pharma.
Mr. Rose, I even wrote to McGill. As far as I could see you are not listed as faculty. I could only find “one” reunion picture with you in it from McGill. I guess you are their red headed step child.
Mr. Rose, there are NO publications found other than your blog. I may actually write to McGill and let them know you are throwing their name around.
It says you have a PhD from 1976. Yet your only publication found appears to be your medical myth’s blog.
At least Dr. Ziv Haskal’s credentials are well known and published. It appears you are going up against Goliath as he at least has real medical publications in the scientific community. His work is by far more credible than yours. why do you think anyone would believe anything you say?
I think I will write to McGill and point out that you are misrepresenting them. You pretty much are tarnishing that institution’s reputation by using their name.
Colin Rose said
You didn’t look very hard. Just type my name into the McGill staff directory, http://www.mcgill.ca/directory/staff/
Check out scholar.google for my publications.
Exactly how am I misrepresenting McGill?
Up against Goliath? Really? McGill ranks #19 in the world and the best in Canada, the U of M only #104. If the U of M keeps deceiving desperate patients it will rank even lower. McGill will have nothing to do with Zamboni’s fantasy. They approve of my blog.
http://www.topuniversities.com/university-rankings/world-university-rankings/2010/results
By all means write to McGill. Tell them why you think “CCSVI” is real and “liberation” should be done on demand.
chiefumtaga said
It is unfortunate that people such as Japentz do not respond rationally to the facts that Dr. Rose presents. Instead they try to intimidate them (is it because of the inherent weakness of the CCSVI theory and this is the only ammunition they have?), witness the fact that several CCSVI fans complained to the Ontario College of Physicians and Surgeons about Dr. Paul Freidman after he pointed out the numerous flaws in Dr. Zamboni’s therapy.This is reminiscent of the British Chiropractic Association suing Simon Singh for his criticism of their “treatments”.
therealboobear said
What is astonishing is the lack of respect for any credentials in the pro-CCSVI camp.
On this very blog, Dr. Zamboni was referred to as a “leg vein doctor”, though he is a professor and established vascular surgeon. Not an associate professor. Department head. Not of radiology, but of vascular surgery.
The issue with Dr. Freidman is related to his position of authority within the MS Societies. Those societies have an obligation to approach new theories and research those fully. Hard to do so when a senior member of your advisory staff openly calls this a “hoax”- then has the gall to request money to fund research into the theory. That’s akin to swearing it’s not raining outside before you look out a window.
There are patients- lots of them, this author included- that experienced very positive benefits after the procedure. No drug or procedure provided these benefits to date. As such, I am not eager to discount the theory in its entirety, nor do I feel it is fair to write off all of these benefits as subjective. Restoration of proper blood flow cannot be a bad thing, no matter what.
Colin Rose said
@ therealboobear : Zamboni is a “phlebologist”. He only operated on leg veins until he tried to raise his status by inventing a venous disease that, he claims, causes MS and can be cured by, guess who, vein surgeons. Then he proceded to use his wife as a guinea pig to try out his potentially hazardous “liberation” treatment. The University of Ferrara tolerated this behaviour. If he had tried this at any university in North America he would have be fired immediately for highly unethical practice.
If you carefully read my blog, http://bit.ly/aPiD4U, you will see that the only way that a venous blockage can cause reduced blood flow to the head is a by a blockage in the superior vena cava, the main vein from the upper body that enters the heart. Even total occlusion of both internal jugular veins will not raise intracranial pressure and reduce blood flow to the brain. The emissary veins that connect intracranial and extracranial veins relieve any transient increase in intracranial pressure from blocked IJVs. Obviously, Zamboni knows nothing, or is willfully ignorant, of the venous circulation above the legs. Whatever “liberation” is unblocking, if anything, can make no difference to cerebral blood flow.
All reported benefits from “liberation” are due to faith healing with possibly the occasional coincidental spontaneous remission. The disease will progress in those patients in which is destined to. Symptoms will worsen or return and will be blaimed on “restenosis” and Zamboni and his fellow “phlebologists” will have a lifetime of yearly multimillion dollar incomes from doing “liberation”. It certainly beats stripping leg veins.
chrishadms said
Folks you are arguing with a medicine Nazi. He is just like all those old Nazi’s at the end of WWII who had been trained so long in hatred.
They ended up meeting in basements to keep their form of hate going. Colin has the internet where anything is allowed no matter how uninformed you are you can write whatever you want.
Pablo Zamboni is Colin’s Jew and all of his patients are the Communists in his little Nazi Germany. If Colin had his way we would only see all the little Mengele’s in his world. He hates the fact that someone flew out of Nazi Germany to get medical treatment.
What’s nice is all those old Nazi’s died off. So will this medical Nazi, in fact if we were smart we wouldn’t even respond to this guy and let him write to himself. I really don’t even talk to him anymore because you can’t argue with a fool. I talk with his readers because they have a clue, whether for or against.
I akin Dr. Zamboni’s work to what anyone outside of Nazi Germany did in the 30’s and 40’s. It was looked at by the Nazi’s as being run by the Jews and Communists and not good. Yet it was those same people who got kicked out who ended inventing the stuff to beat them. The rejected stone became the cornerstone.
Thank God, Thank God Colin doesn’t have his way or we would all be hauled off to camps, and if we were still proactive in fighting our disease, we would be gassed.
I know of a woman who is a good friend. She has SPMS or so they thought until this. She went in a year ago and was opened up. 100% left jug and 60% right. Her disability was on her right side. This woman in 7 years had not raised her hand past her shoulder to wave, the spasticity was literally,you could feel the cramps and stiffness yourself in her shoulder and back, and her right leg did not work for the last 7 years as well. Slid it along behind her like she was dragging a sack of laundry. She slept 4 hours a day besides a normal 8 hour night sleep. Her fatigue was horrid. Cognitive wise she would loose track in her mid sentence. She would make a list and loose the list.
She had tried every drug out there and kept sliding. Even the big M and nothing.
So out of sheer terror she decided to try CCSVI. It was cheaper than doing HiCy again like I did, and she was willing to try it. See when you have a bad disease and no doctors will help you and won’t listen to you just like the Nazi’s or Colin, you get frustrated and go somewhere you can at least keep trying rather than just dying because a doctor told you too. Even if it doesn’t work you tried and were proactive…a concept the chronically ill only understand…not the well.
The day after the surgery – which was all ballooned- her fatigue was gone. No more fatigue. Gone. 4 hours of sleep a day gone. She was as sharp as she used to be. Her red face was gone and she had good color. Her hands were finally warm. Right hand skin numbness gone. 4 hours after surgery. How do you fake this?
Within one month of the surgery she was able to lift both of her arms up over her head and the spasticity, something you can not fake an improvement on, was gone. Full range of normal motion in her arm. How do you fake that?
Within 3 months she was able to move the foot on leg again. She was walking again normally all it very very slowly. The fact she was moving the leg at all was amazing…who cares if she is in a chair right?
Well at 9 months she was walking with a cane again. All of this was not done with PT. This is her waking up one day and going, “Wow this works again!”, and using it. How do you fake this??
In Oct her foot drop returned and the spasticity did too. She was getting tired again but not as bad. Cognitive I didn’t notice but she did. How do you fake this??
She went back in and found her left Jug had re-colapsed down to about 50%. The re-balooned it. By the time she got back to her room she was where she was earlier in Oct. It is now December, a week ago she put up a Christmas tree. How do you fake this?
I haven’t had the balls to tell her that for the first time in 20 years she feels good and she has improved but it’s all Placebo because a medical Nazi who has yet to show us why he knows anything about the subject.
Phooey on him.
Kudos to every medical doctor, scientists, and every patient who stepped out of the box. Even if it isn’t the right treatment you are not letting a doctor like Rose dictating how you fight a disease. If I would have listened to my doctor and not done HiCy I would be in a bed with a catheter now. Needless to say I no longer have that doctor.
I never understood the concept of letting a doctor like Colin Rose lead you into a grave. If there is something out there that could help and you the patient are OK with it…to heck with Colin’s opinion. Opinions are like butt holes and Colin has both!
PS I lost family in the holocaust and if one of the people in my family who was in – well nm- can use this analogy so can I.
therealboobear said
@ColinRose: May I see your sources for substantiation of your comment, “only operated on leg veins” et al?
maldendj said
I know, from my point of view, that procedure (balooning/stending) itself is unnecessary.
chrishadms said
I agree Mladen. Something I do not know. I would think if you are 100% blocked like my friend, no blood thinner would make it better. I may be wrong though, I don’t know.
It is much appreciated the way you went about stating that above. A different point of view without dogging anyone. Some of the stuff you have mentioned is why I have not done it myself. The results are looking good, but why do they look good? Some look bad but why? So there is more to be learned.
therealboobear said
But not all of us even received anticoagulants, yet have similar results.
I was prescribed Plavix as a precaution. I took the Plavix for two months (I have not been on Plavix since the end of October). I have had no decrease in energy level (my naps used to be four-hour events) or cognitive level. I did develop numbness in one leg, but it resolved itself after a couple of days (not weeks). So I am not ready to attribute everything to the Plavix, because unlike chemo and CRABS, Plavix does not have a lingering effect once you stop taking it.
And no, I do not take any aspirin. I don’t take any drugs right now- which for the first time in years- is really fricking wonderful.
chrishadms said
How long out are you realboober? Could be Placebo?
therealboobear said
I just had my 120-day anniversary of the procedure last week, Chris. And I was critical going in. I did not have any expectations of a cure. Rather, based on all the research I read, I felt it was a way to halt further progression.
I was as surprised as anyone at the things I could do immediately after the procedure, particularly things I did not expect to happen. I struggle with the placebo answer, both because it is too broad of an explanation as well as I can’t attribute placebo for things that I did not expect to improve.
In other words, if I was not even aware that I had lost degrees of functionality (largely because I think we get used to that stuff over time), how could I wish those things better?
Colin Rose said
@ therealboobear : Check out Zamboni`s publications in scholar.google over the last 20 years. Except for the recent “CCSVI” stuff, they are all about leg veins. Anyone who calls him or her self a phlebologist deals with leg veins, the veins that cause that unsightly but not life threatening statis dermatitis, a very common problem.
therealboobear said
Thanks. I did check it out. And while there are several publications that relate to leg ulcers and similar diseases, Dr. Zamboni has also authored or co-authored papers on the circadian occurrence of pulmonary embolisms, nontraumatic thoracic aorta rupture, and abdominal aorta rupture (not to mention progentitors and their interactions with lympocytes). All of these are vascular items of discussion, including the veins in our legs, so it makes sense that a vascular surgeon would publish on those items.
His career focus has not been solely centered on cosmetic solutions at all.
Colin Rose said
At any rate, I don’t know how Zamboni can actually do any operations. His right hand seems to be partially paralyzed in the videos I have seen of him.
Whatever he may know about varicose veins and aortic aneurysms is totally irrelevant to cerebral blood flow and MS. Clearly, he has never reviewed the literature on occlusion of internal jugular veins and the connections between intra and extra cranial veins, diagrams from which I show in my blog. Even total occlusions of both internal jugular veins does not raise intracranial pressure and so cannot cause any brain pathology. “CCSVI” is just another name for normal variations in venous drainage from the head.
beveikrimtas said
@Colin
You rose the “his hand” question for the second time, so let’s answer it.
Zamboni suffers from CMT (most likely HMSN Type II) and he is slowly progressing. On this video (http://www.youtube.com/watch?v=jZj0H7nz4TA, watch closely the segment at 25-29 sec.) you can see how much dexterity he has left.
The great irony of his situation is that the onset of CMT begins from disturbances of “fast flow”, which is typical for gray matter disorders. White matter (including MS) problems are always connected with “slow flow” system. Zamboni doesn’t know that.
CMT is treatable (and sometimes reversible, including other MND) at the beginning, but now, in his case, all what could be done is to halt the progression, not so much of restoration though. Most likely that Salvi is his neuro and trying to help, but being deep in immunology he was (and still is) unaware of other options. (BTW, there are 150.000 patients with CMT in States alone, therefore it is not so “rare”, and if you add other similar disorders then, altogether, they will outnumber MS greatly.)
Zamboni’s personal situation makes him rather desperate and irrational. He has nothing to lose and he must ensure additional financial stability for his family members. Unfortunately his treatment didn’t work well on his wife: despite being on DMD all the time, she needs a walker again. Well, maybe it is just a rumor, but I tend to believe because otherwise she would be an ideal “iconic” person for CCSVI movement.
Time will put everything in the right place. But if you remember the history of lobotomy it took 50.000 patients to stop it. Let’s see the number of “CCSVI treated” in couple of years. I expect that law suits will follow when people, who will deteriorate at faster pace than before operation, finally figure that out.
From scientific point it would be quite interesting to see how MS will change its natural cause after “messing up” with jugulars. The distribution of plaques will has different pattern, the plaques will have different size and shapes (comparing to previous lesions), the treatment will be more challenging, and unfortunately the outcome will be more pessimistic.
Colin Rose said
@Beveikrimtas :
Very interesting. Do you have a reference for his diagnosis? Or maybe it’s obvious from the videos if you are a neurologist.
CMT is a hereditary disease of myelin of the peripheral nerves, not the brain, so has nothing to do with brain blood flow.
Why have none of the numerous journalists reporting on his story ever mentioned Zamboni’s own neurological condition? Clearly he cannot be called a surgeon if he can’t hold a scalpel. If nothing else it would be good for selling the story and attract sympathy to show a husband and wife with peripheral and CNS disease. It is certainly relevant to his situation and helps to explain his desire to get into imaging if he can’t operate any more.
beveikrimtas said
@Colin
The conclusion was made ad oculum; he has very typical set of symptoms. Not only hands are involved, he also has pes cavus, right side is more affected. He had mentioned his condition on several occasions to public, but never accented it much. Officially there is no cure for CMT.
Of course CMT is a hereditary disease, but you miss the epigenetic component. Epigenetic changes “turn on” the disease; they are responsible for the timing of onset and shape the following course of disease. Without them patients live their lifespan marked as bearers only and successfully passed their disease along to next generations.
BTW, all cases of neurodegenerative disorders (including so-called “sporadic” cases) are triggered by epigenetic changes. About 80-90% of epigenetic changes in brain are of circulatory origin.
In addition.
I wonder why nobody raises the question of conducting the animal study of CCSVI. It could be done fast, say, in 6 months (after approval), cheap (I hate rodents but they could be used) and absolutely safe for patients.
chiefumtaga said
@Beveikramtas,
Actually the idea of using animals to test CCSVI was suggested over a year ago. In the article by Lynn Saxberg (Ottawa Citizen, November 25, 2009) Dr. Mark Freedman states at a meeting in Lisbon he suggested to Dr. Zamboni,
“Why don’t you tie off a few of the blood vessels in animals and see if they develop MS?”
Dr. Freedman says Zamboni’s reply was, “I’m not a mouse researcher.”
But Dr. Zamboni seems to have no hesitation to experiment on humans. Even if there is no credible evidence for the existence of CCSVI.
beveikrimtas said
@Chiefumtaga
Of course this isn’t the first time when such ideas were suggested (I know some studies proposed 20 years ago) but this isn’t as simple as you could think. If you ligate one or even both jugs you will never get MS in animals. This design would be very straightforward and actually worthless. Why? We have already a cohort of 50.000 – 70.000 patients worldwide after jugular vein ligation, and maybe over hundred with both jugs “tied off”.
No one got MS after, not a single case was observed and published.
Zamboni knows that, as well as any other IR or vascular surgeon. The ligation of IJV considered being safe and routinely performed on cancer patients, patients on dialysis with jugular access, in cases of neck trauma, etc. [Remember I wrote about one IR who had done this to his wife to stop her “ringing in the ear”? And what, now he is all over CCSVI and wish to balloon any “twisted” jug for 10.000 dollars.]
Let’s back to animal studies.
It is relatively easy to recreate the “CCSVI” condition in animals; the trick is who will go after this (or stay behind, or finance it – choose the proper definition).
Maybe you are unaware that you can design the legitimate study “upon request” to get the result desired.
In this case you can make a study which could “prove” CCSVI, another study which could “disprove” CCSVI, and third – the “interest clean” study which could show the real picture. There are some “trade secrets” how to design them in a way you like.
So, next time when you read a paper, even published in respectable peer view magazine, don’t trust it blindly, go to methodology and only then you could make a conclusion about validity of the study. Of course you need to understand how things work, BG.
Zamboni has no interest in academic science whatsoever; watch him to open his own CCSVI shop, maybe not in Italy when he seems got a problem with Italian Ethic Committee, so it will be open somewhere nearby. Of course this move will be explained as “a choice of better facility with more easy access” or something like that.
beveikrimtas said
@ chrishadms
Your comments are very emotional, but you better try to listen and, if capable, to understand the position of Dr. Rose.
I respect Dr. Rose stance on this matter, the medical world would be a better place if we’ll have more doctors like him. It’s not easy to say a word of truth against the hype knowing that you’ll receive a lot of anger from the mob of fanatics, well, maybe just from deeply misled MSers.
Exploration of Hope is hard to beat, the mission is nearly impossible.
I agree with Dr. Colin on fundamentals, he is right 100%. The fundamentals of hemodynamics can’t be change; otherwise you must change a lot of other things, say accepting that the Earth is flat.
For ex., if you were told that the apple while falling from the apple tree somehow manages to reverse its fall and hit the branch causing substantial damage to the tree you will be suspicious at least, but that’s exactly how CCSVI “thing” looks to professionals. Think twice before screaming of “opposition”: nobody could change fundamentals, nobody could observe apples jingling back and force in the air, but if it suits you – stand your grounds and pray.
I agree with Dr. Colin on his remark on Zamboni, yes, he is a former “varicose vein doctor”, and yes, he has limited knowledge about brain hemodynamics and MS.
Zamboni has build his mentality on study (and work) on leg veins and then simply transferred his approach (but I have no doubts he knows a lot about leg veins) to the brain.
Even by naked eye you can notice the vast difference between extremely coordinated and very complex circulatory systems of brain and very primitive leg vasculature.
Brain is not “a barrel with two hoses attached”, as some of IRs repeatedly said.
I disagree with Dr. Rose on “placebo effect” thing. This is not a placebo in most cases, people really experience changes esp. in brain fog and energy, etc, but MS is not Dr. Rose field of expertise, he just tries to find the most fitted explanation.
I’ve seen such changes; more, it is possible to recreate them or affect/treat any of symptom of MS (no blind shots or guesses!) without venous angioplasty.
The mechanism of such changes is complex and has nothing to do with “refluxes” or “venous back jets” (my favorite funny part of CCSVI) halting.
Free advice: if you want to improve you stamina and get you feet warm and head clear, reduce some spasticity, and you desperately want to do “CCSVI Fix” right away -then don’t go for jugulars, ask your IR to stop right before jugs valves, your outcome will be better and will last longer.
Once messed with jugs you’ll deal with negative consequences forever, esp. if you damage the valves. I’ve heard about the IR on the West Coast who now “crushes” them for a reason to avoid clotting. Well, if you want to get an early dementia or TGAs or other similar “adds-on” – go for it, crush the valves, rip off the endothelium and sit on the “endothelial health” diet, good luck with that.
There is the positive side of CCSVI movement which I personally like.
You don’t even imagine how many really good doctors (mostly neurologists) and scientists lost their jobs and careers trying to oppose EAE-made MS model. But everyone knows of others (well-known names with MS label attached) who came into MS and rise to top positions on the wave of lavishly funded trials controlled by Big Pharma. All major (scientific) magazines on this topic were like “top guard dogs” by rejecting any fresh ideas which could interfere with the mainstream opinion; let’s mention the most notorious one – the “Brain” (at Dr. I. McDonald times).
There are abundance of remarkable pieces of information published in out-of-topic books and non-related periodic on different aspects of MS and other WM brain disorders, they are not on the Internet yet, and it is almost impossible to find them in libraries.
Maybe the new studies, it doesn’t matter to “prove” or “disprove” CCSVI, will turn the MS wheel around. Maybe.
BTW, concerning “Mengele” thing. Please browse my earlier comments; you’ll see my opinion on this. I’ve compared Zamboni to Mengele few months ago and explained why.
I would better compare Dr. Rose to Oskar Schindler who desperately tried to protect innocent people from being hurt or killed. Also, I guess that he has someone from his family lost in Holocaust too.
@maldendj
Anti-inflammatory drugs work on MS, anticoagulants don’t. NSAIDs are better in a long run because steroids block remyelination process, that’s why they must be used during relapses only(!) and for very short-term as a Pulse-Therapy. Use of steroids for “prevention” is a crime.
FYI, Betaseron long-term study (15 years and more follow-up) will be negative, means the outcome would be worse on Betaseron, without having Ibuprofen aside, but seems nobody noticed the trick. That was a clever move made.
@therealboobear
I don’t think Dr. Freedman understands MS well enough either.
Stay well,
BR
japentz said
Colin your problem is you disrespect others, people who are tenured and well reknown for their work in interventional radiology. Why do you have this nazi like view?
I did look you up. I even wrote to the university. No ressponse. No listing.
I don’t get what exact joy are you trying to get by dismissing another academic professional and scholar. The very fact that you do this makes you not credible.
Its fortunate that very few people pay attention to you. If they do they are quite gullible.
I have numerous friends who can now walk again. Its not placebo. Really Mr. Rose, you are pissing into the wind on this one. There are by far too many people who are walking living proof that treatment for CCSVI is a reality.
Literally, pissing into the wind. You cannot stop this. And you are only making yourself look like a pompous moron throwing a temper tantrum.
There now exists too many people, including many friends of mine, who know angioplasty for CCSVI is a reality. Walking living proof.
PS. I’ll also be helping raise funds for CCSVI for Dr. Haskal and the University of Maryland. I look forward to the day when he will do the Angioplasty procedure on me so that I can join a number of other friends who are now able to live their lives again, after being treated by him.
Exactly, what “good” do YOU do for humanity? No don’t answer. I can’t even find you on Google. /rolls eyes.