CCSVI: My Widely Respected Neurologists' Suggestion

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby jay123 » Wed Dec 23, 2009 10:59 am

ozarkcanoer wrote:Dr Zamboni isn't addressing the immune system aspect of MS. There are
gazillions of studies that are currently funded that are addressing this aspect. It would be nice if it were all wrapped up in one small package, but it isn't. Given the failure of current drugs to treat progressive patients, a look outside the box is warranted.

When Avis Favaro asked Dr Zamboni "Is MS an autoimmune disorder?", Dr Zamboni said "Of course it is. We have proof." All Zamboni is claiming is that his studies have found that inadequate venous draining from the brain is strongly correlated with MS, and that he has a procedure that repairs venous malformations of the jugular and azygous veins.

My take on his theory is since CCVSI and MS seem to so closely linked, then maybe CCSVI is a cause and not an effect of MS. Someone else might argue the reverse. Then that someone else should PROVE that CCSVI is an effect of MS. Right now my vote goes to Zamboni.

ozarkcanoer


My vote goes that it is a cause of MS, and the EBV is the cause of the vein problems!
It will be interesting if those poor mice that are getting their veins twisted up right now do develop any lesions. If they do it will prove CCSVI does cause them. Unfortunately, if they don't get lesions it won't disprove it because there still isn't any proof mice can get MS!
Round and around we go!!
Good thoughts though.
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Postby danegirl » Wed Dec 23, 2009 11:10 am

I am not a mouse. Nor do I react as a mouse.

In my opinion, studies in mice are useless. They cannot be compared to humans, and never will. Neurologists and scientists have spent the better part of over 50 years playing with mice, and not gotten a single step closer to solving the MS mystery.

But it keeps them busy, and it keeps the funds coming in, and that seems to be their main goal.

My opninion.
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Postby Lyon » Wed Dec 23, 2009 11:18 am

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Postby patientx » Wed Dec 23, 2009 11:51 am

jay123 wrote:Though I try to just ignore the people on here who are here just to stir controversy and not have intelligent discussions I have to at least point out pure BS - in blinded studies patients are also ALWAYS 'blinded'. The purpose of this (and the reason that many are asking for a blinded study of this) is to eliminate the placebo effect. I forget the exact numbers but in almost every study even the placebo patients report improvements, it is a powerful force.


Was this in response to my post?
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Mistaken Respect Neuro

Postby MarkW » Wed Dec 23, 2009 11:53 am

Hello Chris1967,
Your neuro has taken Prof Zamboni's finding of 'correlation' between CCSVI and MS to mean 'causation'. This is not true and is an extremely important point to keep this in mind. At this stage Prof Zamboni has shown a correlation between CCSVI and MS. He has also shown it is possible to treat CCSVI using angioplasty at low risk. The Buffalo study should show that there is a correlation between CCSVI and MS with a meaningful sample size.

Your widely respected neuro said:
1) Dr. Zamboni’s findings contradict decades of prior research from hundreds of scientists around the globe. Most prior research points towards MS being due to a combination of genetic and environmental factors.
This is putting words into Prof Zamboni's papers which are not there.
How environmental and gentic factors may provoke CCSVI to provoke the immune system (or the other way round) will take decades of research. Many people on this website say cause when correlate is the correct verb. There is a correlation between CCSVI and MS according to Prof Zamboni, which is being tested by the team in Buffalo NY.

I hope you and your neuro can keep things simple and talk about the correlation between CCSVI and MS. Next, test you with MRV/Doppler and treat you if appropriate.

Some of the chat on this site is mis-leading. If you have the time start with
http://csvi-ms.net/en

Happy reading,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby patientx » Wed Dec 23, 2009 11:58 am

ozarkcanoer wrote:When Avis Favaro asked Dr Zamboni "Is MS an autoimmune disorder?", Dr Zamboni said "Of course it is. We have proof." All Zamboni is claiming is that his studies have found that inadequate venous draining from the brain is strongly correlated with MS, and that he has a procedure that repairs venous malformations of the jugular and azygous veins.


This sounds like a very reasonable statement based Zamboni's studies so far. But, this isn't all that is being claimed, by Zamboni and many others. They are saying that opening these veins will stop the MS progression, when there is only minimal evidence of this.

But supposing the occluded veins do lead to MS, and not the other way around. Then, is opening the veins enough? Or will some sort of immune suppression be needed to stop the immune process already set in motion. Or will a patient need to be on one of the CRABs, such as Copaxone, only now with 100% effectivity instead of just the 30% relapse reduction. And for how long? 1 year? The rest of his or her life?
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Postby Lyon » Wed Dec 23, 2009 12:45 pm

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Postby jr5646 » Wed Dec 23, 2009 12:49 pm

Chris,

Sry so long... I guess I got carried away.

My opinion, for what it's worth... First and foremost - get your space bar fixed (joking - haha..) Secondly, I for one don't really care what the cause of MS is.. I just want some freaking relief...and I'd like to have it yesterday... Years and years of treatment and tracking may or may not prove ccsvi as the trigger for MS, but I don't have that kinda time. I need treated NOW. The current med.s and those who prescribe them just don't get it... the stuff doesn't work....

Seriously though, I think your Dr. would probably be taken a little more seriously if he came here personally and expressed his views / concerns openly.. That is, if he's genuinely concerned with helping. Did he "really" throughly check out the ccsvi research? Did he invest the time? Did he attend a conference that fed him the mis-information? or perhaps heard some bs from a worried pharma rep. who took him out for an expensive dinner? Your Widely Respected Neuro may be getting alittle territorial / defensive ... and rightly so, if he feels the paradigm shift may just leave him out in the cold.. Especially if he's worried all his PT's are going to leave in droves for vascular Doc's. Not only that, but man is he is long winded... My widely respected research neuro gives me 15 minutes (every 6 months) because he has so many PT's to see (or he acts as if he's busy?). I'm lucky to get a script and a pat on the ass...LOL - most importantly, the bill!!! The MS nurses are much better at care than the DR's are anyday..... Your neuro must not have been too busy that day to take that amount of time to discuss ccsvi with you, though? Well at least he discussed it with you... mine completely blew me off when I gave him the research papers...

I'm really beginning to get the feeling that the neuro community is shaking in their shoes.. It seems to me that the more they try to negate the research, the more it adds validity to it...... You very rarely, if ever, hear of a neuro speaking out against a drug company... Hey, I'd love nothing more than to be "Liberated" from my neuro., that's for sure.

Most MS research deals primairly with a chemicals..... Cash Cow comes to mind... God forbid Zamboni finds a relatively simple procedure that brings almost instant relief to the suffering... What do you mean, no need for 40k per year drugs? That won't fly... The neuro's have a good gig going, so why mess with it???.. Countless revolving doors full of PT's that they, in all honesty, can't really help... All they do is write scripts and order some tests... If they loose PT's how the hell are they going to pay for the 500k in student loans?

Why is CAUTION warranted where ccsvi is concerned??? I have yet to hear a reasonable argument as to why caution is warranted? Would someone please enlighten me? and hell yeah, I'm excited... The thought of getting thru the day and not feel as though I've just ran a marathon is quite motivating.... I'm not asking for much here...

You don't need doppler scans to find stenoses... I believe Dr. Dake at Stanford does not use them at all..

Zamboni's theroy contradicts most if not all conventional "wisdom" where MS is concerned... That is the beauty of it.... Those who have completely bought into the "conventional wisdom" and are proven wrong sure are going to feel inferior..

http://en.wikipedia.org/wiki/Blinded_study
The blind method is a part of the scientific method, used to prevent research outcomes from being influenced by either the placebo effect or the observer bias. To blind a person involved in research (whether a researcher, subject, funder, or other person) is to prevent them from knowing certain information about the process.

- I do believe part of Zamboni's research was "blinded"... when the doppler was proformed, the technician did not know if the subject had MS or not.

- I would say though, that if one was found to have blockage, it's almost certain they have MS... very difficult to blind that in a study that requires surgical intervention.

- Check out the azygos vein - the one that drains blood nearest the spine.

- Lets just take MS out of the equation.. Forget MS completely.. If blockage is found in ANY vein, or artery for that matter, and the technology is readily available to not only find but repair it, shouldn't it be treated? It wolud be cruel to NOT treat, don't you think?

As far as caution goes, those of us who are treated with the extremely expensive drug Tysabri, were told we had a 1-1000 risk of developing the potentially deadly PML brain infection... I believe the number of PT's on TY are around the 60,000 area.. so obviously the reward was greater than the risk... Take those same PT's and treat them for ccsvi - I'm sure they'll sign off on any "risk" and gladly dump TY.

Here's a thought... maybe we should all be lobbying the insurance companies who pay the huge bill to pharma for this potential billions of dollars saving treatment??? $ talks, sadly..

Print this thread for your Dr.

-John
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CCSVI and Progression

Postby Shayk » Wed Dec 23, 2009 3:34 pm

Patientx
...Zamboni and many others. They are saying that opening these veins will stop the MS progression,

I'd appreciate citations for your statement as well as clarification of who "they" are and citations for those statements.

From Dr. Zamboni's pilot study,A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency
Conclusions:.........The results of this pilot study warrant a subsequent randomized control study.

Thanks--

Sharon
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Postby Chris1967 » Wed Dec 23, 2009 7:04 pm

First I'd like to thank everyone who's taken the time to chime in, there are many passionate and excited opinions I see, I need to thank you all for your thoughtful responses, you've given me much to consider and I may have bitten off more than I can chew here. I feel responsible now for putting some sort of thesis statement together and handing it back to my neurologist. The problem is, for as much as I've read on the subject there is so much more I dont know. Lord knows I have the time to educate myself. In the mean time, I thought I'd share this letter by Dr. Embry, It sure gave me alot to think about as well:


Hope and Elation - Frustration and Anger – Fear and Loathing:
The Contrasting Emotional Responses to the Revolutionary
Discoveries in MS Made by Dr Zamboni



The beautifully crafted, CTV (Channel 5, Canada) documentary on the astounding findings of Dr Zamboni and his team for multiple sclerosis has hit the MS community like a tidal wave and has evoked a variety of emotional responses. Most people with MS see CCSVI as a huge breakthrough for understanding and treating MS and had an initial feeling of unbridled elation that finally there was some real hope for an effective treatment on the horizon. I expect most people with MS thought “I have to get my veins checked out!”, even before the credits rolled on the Zamboni documentary.

Such a reaction is completely understandable. Dr Zamboni’s research leaves very little doubt that most people with MS have impaired venous flow from the brain and that such a problem is caused by narrowing and outright blockag in the main veins which drain the brain. To anyone with a semblance of objectivity, this is a “no drainer”. I might note that small studies in Poland and at both Stanford and the University of Buffalo in the
USA have already confirmed these findings. The University of Buffalo is now doing a very large study to add further confirmation. I would be willing to bet the farm that this study will validate Dr Zamboni’s findings and, most importantly, it will silence the vocal skeptics, many of whom are neurologists with a blatant conflict of interest regarding the emergence of a potentially effective, non-drug treatment.

I have noticed from discussions with numerous persons with MS over the past few weeks that the initial feelings of excitement and hope have been replaced in many cases by anger and frustration. This has come about because everyone is finding it impossible to get an MRV (Magnetic Resonance Venography ) to determine if they indeed have venous blockages. In Calgary, one person I was speaking with called every private imaging clinic and got nowhere. The receptionist at each clinic simply read a prepared response they had gotten from Alberta Health that there is not enough evidence to warrant such a scan. I quote from a November 26th email from the manager of one clinic “Until we get further instruction … we don't feel that ethically we can institute these scans for patients”. Always nice to know the Alberta government is out there making sure persons with MS do not find out if they have a serious venous problem or not.

I have spoken to a few dozen persons with MS and each one expressed their burning desire to find out if CCSVI affects them and if so, how badly. And each one was very angry and frustrated that there was no way they could get such an important test done. The fact that the government substantially contributed to the problem only made them angrier.

When it comes to fear and loathing, I expect these feelings are being harbored by other constituencies of the MS community, namely the MS clinicians, researchers, drug companies and charities. Why would such pillars of medicine fear and hate CCSVI? Regarding the clinicians, I have no doubt that they quickly realized that, if relief of CCSVI is an effective treatment, especially for the newly diagnosed, then they would essentially be cut out of the action when it comes to treating MS patients. Once a person was diagnosed with MS they would be immediately referred to a vascular specialist who would then oversee the person’s treatments. It would be “diagnose and adios” for the neurologists, a somewhat ironic development given that is how the neurologists used to treat MS patients before the advent of MS drugs in the mid-90s .

As far as the MS researchers go, I can definitely empathize with them. I have been involved in research for over 40 years and I know, if someone suddenly demonstrated that I had spent the last 40 years barking up the wrong tree, I would have a variety of intense, negative feelings. One thing that has never been mentioned is how the Zamboni results demonstrate that the EAE animal model, which is widely used in MS research and
upon which 10s of millions of dollars are spent every year, is clearly not suitable and is almost worthless. The mice do not develop CCSVI and thus the EAE model is no better than an animal model in which the mice developed CCSVI but no CNS lesions. A viable animal model for MS needs to exhibit both phenomena – end of story. Such a realization will cause great gnashing of teeth in the wide world of MS research.

It is also not a stretch to predict that fear and loathing in the MS research community will turn to anger and I hope Dr Zamboni is prepared for some blistering attacks on both his work and his character. Hell hath no fury like a researcher proven wrong or disenfranchised. Finally, I won’t belabor the fears and anger of both the clinicians and the researchers regarding the potential loss of all that drug company largesse and research money which has been a bonanza over the past 15 years.

That brings us to the drug companies that supply the drugs that currently are used to treat MS or are in development. I have no doubt these companies must be having hand- wringing meetings these days to discuss the threat of a potentially effective, non-drug treatment for MS. The boardrooms must reek of fear and loathing when the obvious
implications of the Zamboni discoveries are discussed. The bottom line is that there are tens and possibly hundreds of billions of dollars at stake in the foreseeable future and the drug companies are not going to let that kind of serious cash simply disappear without a fight. It is impossible to predict how the companies will deal with this real threat to their
bottom lines and stock prices but you know it is not going to be pretty.

Finally I suspect there is a lot of fear and loathing going on at the national MS societies in the countries with high rates of MS (e.g. Canada & The United States). For the MS Societies of Canada this has been a public relations disaster which potentially will translate into a loss of revenue. The most obvious, embarrassing aspect of this fiasco is the fact that MSSOC wasn’t even aware of the Zamboni research until mid October when they put up on their website a few, pathetic paragraphs on CCSVI that were cribbed from NMSS. They had absolutely no plans to fund any research on CCSVI until the CTV documentary put a gun to their head and they then hastily cobbled together a press release (in which Dr Zamboni’s name was misspelled) and issued a call for CCSVI research proposals.

The big question is why, with their blue-ribbon scientific advisory board, did MSSOC have no clue about CCSVI when papers on the subject began appearing in 2006 and major contributions were publicly available in late 2008 and early 2009. Were all their scientific advisors asleep at the switch? Assuming these renowned researchers read the scientific literature, do they have the ability to recognize a watershed contribution when it crosses their desk? The fact CCSVI went unnoticed by MSSOC for more than a year is cause for serious concern about the competency of the organization in terms of providing reliable and timely scientific information to their members. What other important information is currently out there going unnoticed by MSSOC and its scientific advisors?

To sum up, Dr Zamboni’s amazing and groundbreaking discoveries have induced a wide variety of emotions in the different factions of the MS community. Such emotions are going to make it even harder for his findings to be properly tested and, if proven to be correct, to be incorporated into clinical practice. Regardless, it is important to realize that such strong emotions exist and to be cognizant of the different and somewhat antagonistic views and goals of the two groups that comprise the MS family – those that live with MS and those that live off MS.
Dr. Ashton Embry

I'd like to thank Dr. Zamboni and Dr. Dake especially for their ongoing effort in diagnosing and treating the people who live with MS. If you're reading this, thank you from the bottom of my heart, you've given me hope for a future once again and for a long time, I wasnt able to imagine me IN the future. Thank You!

John I fixed my space bar..lol, I enjoyed your response most, hate to play favorites but there ya go. You can pm me and maybe we can chat sometime or even just bitch about our neuros not working hard enough for us and the FDA working against us.

Here is the original post (with space bar fixed John) and please keep sharing your thoughts and Ill keep reading them with great interest!
THANKS ALL!

Posted: Wed Dec 23, 2009 11:23 am Post subject: CCSVI: My Widely Respected Neurologists' Suggestion

"Any research that sheds new light on the cause and/or treatment of MS is exciting. If Dr. Zamboni’s findings are shown to apply to large numbers of people with MS, it would represent a radical departure from our current model of how MS occurs. Caution is warranted along with the excitement. Here are a few points to consider:

1) Dr. Zamboni’s findings contradict decades of prior re3search from hundreds of scientists around the globe. Most prior research points towards MS being due to a combination of genetic and environmental factors.

2) Findings of venous insufficiency affecting the brain would not account for MS-related demyelination in the spinal cord. Similarly, treating venous insufficiency of the brain with the “Liberation Treatment” would not be expected to have any affect on the spinal cord. For many with MS, disability is a result of demyelination in the spinal cord more than the brain.

3) Understandably, many in the MS community would like to pu5rsueultrasound studies to see if they have the venous changes described by Dr. Zamboni. This may not be an easy undertaking. The series of ultrasounds done in this study were not straight forward and will not likely be available outside of research for some time. We are looking into local options for providing this type of testing.

4) The venous dilation treatment for CCSVI seemed to be of benefit in relapsing-remitting MS, but not in primary or secondary progressive MS. The search for a therapy to slow progressive forms of MS remains frustrating.

5) This trial was not blinded. An unblended trial means that both the doctors and patients knew that active treatment was being given. There is always the potential for unintentional bias in an unblended trial, sometimes making a therapy appear more effective than it really is. The researchers for this trial themselves state,” There isa great possibility that bias could be playing an important role in trying to find hope for the treatment of this chronic disorder.”

More research is planned to see if CCSVI is indeed a cause of MS. Even if this condition only explained MS for some people, this would be a major scientific breakthrough. The take-home message seems to be cautious optimism."
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Postby sunwest » Wed Dec 23, 2009 7:55 pm

patientx wrote:
ozarkcanoer wrote:When Avis Favaro asked Dr Zamboni "Is MS an autoimmune disorder?", Dr Zamboni said "Of course it is. We have proof." All Zamboni is claiming is that his studies have found that inadequate venous draining from the brain is strongly correlated with MS, and that he has a procedure that repairs venous malformations of the jugular and azygous veins.


This sounds like a very reasonable statement based Zamboni's studies so far. But, this isn't all that is being claimed, by Zamboni and many others. They are saying that opening these veins will stop the MS progression, when there is only minimal evidence of this.

But supposing the occluded veins do lead to MS, and not the other way around. Then, is opening the veins enough? Or will some sort of immune suppression be needed to stop the immune process already set in motion. Or will a patient need to be on one of the CRABs, such as Copaxone, only now with 100% effectivity instead of just the 30% relapse reduction. And for how long? 1 year? The rest of his or her life?


Immune system only kicks in when BBB is breached by a lesion. Stop the iron "coins" from forming; stop the oxidizing; stop the holes burning through and you will keep immune system at bay.

There will be never be any correction of MS immune system from thinking myelin is a virus (EBV for example). It is now programmed. The two just have to be stopped from meeting like this.
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Postby CureIous » Wed Dec 23, 2009 8:14 pm

patientx wrote:They are saying that opening these veins will stop the MS progression, when there is only minimal evidence of this.
But supposing the occluded veins do lead to MS, and not the other way around. Then, is opening the veins enough? Or will some sort of immune suppression be needed to stop the immune process already set in motion.


Hi x, appreciate your comments btw. (as a whole not just one comment only).

Not sure however where anyone, including Zamboni, is saying it WILL stop progression, only that it MIGHT stop progression. I think most of us hope for that at a minimum.
My thought early on is this will go combo, surgical fix it and maybe some new drug just to keep the pharmies fat (but slimmed down) and happy. They'll survive, I know I caught an obscure story (2004) on one pharmy with some breakthrough whatever, bought the stock, it jumped up, I sold, it jumped some more, I cried, but then the magic pill turned into phase III mush, the CEO jumped ship, and I learned a valuable lesson. "It's called a risky business for a reason". Glad I took my profit while it was there to take.

Ever feel like we keep having the same discussion in here over and over and over? lol. Reminds me of that song I used to sing with my baby sister from Lamb Chops Play Along. The song that ever ends. hahaha.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrsilkykat » Wed Dec 23, 2009 8:51 pm

I've read this letter on another thread. So I'll ask the question I wanted to ask then: Who is Dr. Ashton Embry and why do we care?

Thanks
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Postby Algis » Wed Dec 23, 2009 8:58 pm

Personally I find it easier to explain scares from stenosis than stenosis coming from scares ?
How could scares in my brain makes my jugulars and/or azygous look like a pig tail :? Or how could it pinch a jugular growing a bone in my vertebrae? For me the scares are the last knots in the process.
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Re: CCSVI and Progression

Postby patientx » Wed Dec 23, 2009 9:07 pm

Shayk wrote:Patientx
...Zamboni and many others. They are saying that opening these veins will stop the MS progression,

I'd appreciate citations for your statement as well as clarification of who "they" are and citations for those statements.

From Dr. Zamboni's pilot study,A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency
Conclusions:.........The results of this pilot study warrant a subsequent randomized control study.

Thanks--

Sharon


Sharon:

The "they" I meant were some forum members here. And I guess I would have to include Ashton Embry in that group (though why people put so much stock in what he says, I have no idea).

From a posting on this forum:
In other chronic venous disease, repairing the veins ends the disease process. The hope is it will be the same in CCSVI. Dr. Zamboni's wife is 3 years out from treatment, my husband is 7 months. Neither of them have had progression of MS, as evidenced by no relapses or new lesions.


I could find others, but I doubt I'd be quoting anything you haven't already read.

And from one of Ashton Embry's blogs (or rants):
Given the data we have, it is not a stretch to say that all persons with MS have impaired venous drainage which is actively, or potentially, contributing to their MS disease progression.


You're right that Dr. Zamboni never directly said that opening veins stops disease progression. But in the recent CTV story:

But preliminary results, already released, show patients had a decrease in the number of new MS attacks, a big reduction in the number of brain lesions that define MS, and improved quality of life.....
Zamboni's sense is that the earlier patients are diagnosed and treated, the more function they will preserve, and the less damage the improper blood flow will do to the brain...
Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again. Rather, it seems to stop the development of further MS attacks, and in some cases, improves movement and decreases the debilitating fatigue that are the hallmarks of MS.


I might add, that by doing this story, I think Dr. Zamboni (unintentionally) created unrealistic expectations in people. But, I am probably unfairly singling out Dr. Zamboni because of the recent hysteria surrounding CCSVI.

I'd also like to say, I am not trying to poke holes in CCSVI or be a critic just for the sake of argument. As someone who has MS, I'd be crazy not to hope that this is the answer. But many questions remain. And while some doctors refuse to even read about CCSVI, some are raising legitimate questions (such as the ones that started this thread) that are not answered in Zamboni's papers or even on Facebook.
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