Class Action Law Suit

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

Postby mangio » Sat Apr 03, 2010 8:55 pm

We actually have some privatization here in the prairies, especially
in the imaging area. Just how will
we get the group we most need to give the go ahead (Neuros) I don't know. They are fighting us tooth and nail.

Ozark we have called everyone we can think of but with no luck.
It's just so discourageing.

A friend of mine just lost her daughter to ms in the fall and one of her grandchildren is very disabled from progressive ms. What can we
tell her. She is so raw with emotion.
User avatar
Family Elder
Posts: 288
Joined: Thu Dec 31, 2009 4:00 pm


Postby Johnson » Sat Apr 03, 2010 10:40 pm

Brainteaser wrote:After I came back from Poland in November, I contacted my neuro to discuss my CCSVI treatment. Not only did he not want to see me but he emailed I should never contact him again. I knew he must be threatened as he peddles Tysabri and the like. I have kept the email. I thought it might come in handy one day.


Hey Phil,

At the very least, you might report him to your national College of Physicians and Surgeons. That is puerile behaviour for a supposed professional - refusing treatment because he disagrees with you. What success has he offered you? Even if the complaint goes nowhere, it is on the record.

I would tend to agree with ozarkcanoer, I don't see any point in suing anybody, because nobody understands what is going on - including us. Sue the gov't, and we are ultimately suing ourselves. Further, sue them for what? For not believing what we believe, or not studying what we have studied?

Our whole paradigm of the nanny state is breaking down. Looking to the state to help us is pointless. We must help ourselves. We must enlist Doctors like Sclafani, and Dake, and Zamboni, Salvi, Mehta, etc. They are on the inside, and can make change from therein.

Doctors are not used to not "knowing what is going on", not used to informed patients who challenge the ignorance that they cannot see in themselves. Do we sue the doctors that have not educated themselves, or are fearful of what they don't know (a state of mind)? Do we sue the government for not making sure that the doctors are not up on their research for every pernicious condition? If we have proof, by way of scans, that we have venous issues that can easily be dealt with by way of known and accepted therapies, and we are refused treatment for same, we have a case, but to sue because we are denied screening for an unproven condition, with an unproven relationship betwixt that condition and another, would only fail in a court of law and be wasted energy. Don't forget that judges are appointed by government (in Canada, at least), and besides, really only deal with proved, or provable facts. That is why our efforts need to be expended pursuing our renegade treatments any way we can, and/or support the research that will prove our case.
My name is not really Johnson. MSed up since 1993
User avatar
Family Elder
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby frodo » Sun Apr 04, 2010 8:53 am

Just in case you decide to go on. Try to avoid the CCSVI name. Just say that "MS patients are discriminated when having blood flow problems". To speak about CCSVI will give them an easy way out saying that it is something new.
User avatar
Family Elder
Posts: 1047
Joined: Wed Dec 02, 2009 4:00 pm

Postby SoberSandy » Sun Apr 04, 2010 9:28 am

What do you mean this condition is unproven??? Plese do not be mislead, the relationship between CCSVI and MS has been studied extensively and has been well documented - there is a lot more proof out there than what I have posted here.
Read On!!!

OBJECTIVE: To develop an objective method for quantifying venous vasculature in brain parenchyma on susceptibility-weighted imaging (SWI). To apply this technique in multiple sclerosis (MS) patients and in healthy controls (HC). BACKGROUND: SWI is a MRI application that can directly image cerebral veins by exploiting venous blood oxygenation. DESIGN/METHODS: Sixty-two (62) MS patients (44 relapsing-remitting and 18 secondary-progressive) and 33 age- and sex-matched HC were imaged on a 3T GE scanner using pre-contrast SWI. A subset of MS patients (50) and HC (7) obtained SWI-post gadolinium contrast sequence (0.1 mMol/Kg Gd-DTPA with 10 min delay). In-house developed segmentation algorithm, based on a 3D multi-scale line filter, was applied for vein segmentation. Absolute volumetric measurement for total vein vasculature was performed in milliliters (ml) and the relative venous intracranial fraction (VIF) was obtained to correct for head size and amount of brain atrophy. The size of individual veins was measured in mm and 4 groups were created according to their mean diameter: <0.3mm, 0.3-0.6mm, 0.6-0.9mm and >0.9 mm. Voxel brain average distance-from-vein maps was also calculated with higher distance indicating fewer veins. RESULTS: A significantly lower absolute venous volume was detected in MS patients compared to HC, both in pre-contrast (67.5 vs. 82.7ml, -18.3%, p<0.001) and post-contrast (70.4 vs. 87.1ml, -19.1%, p<0.011) images. The VIF was significantly lower in MS patients (p<0.001). The highest mean diameter difference was found for the smallest veins (<0.3 mm), both on pre- (p<0.001) and post-contrast (p<0.018) images. The distance-from-veins was also significantly higher in MS patients (p<0.001). CONCLUSIONS/RELEVANCE: We developed and validated a quantitative vein segmentation method that showed altered visibility of venous vasculature on SWI pre- and post-contrast images in MS patients. These findings suggest severely compromised brain venous system in MS patients.

OBJECTIVE: To investigate the relationship between chronic cerebrospinal venous insufficiency (CCSVI) and cerebral perfusion in patients with multiple sclerosis (MS). BACKGROUND: CCSVI is a vascular condition described in MS patients, characterized by stenoses of the main extracranial veins with hampered cerebral venous outflow. We hypothesized that the impaired venous outflow contributes to hypoperfusion of brain parenchyma. DESIGN/METHODS: Sixteen consecutive relapsing-remitting MS patients (mean age 36.1yrs, mean disease duration 7.5yrs and median EDSS 2.5) and 8 age- and sex-matched normal controls (NC), were scanned on a GE 3T scanner using dynamic susceptibility contrast enhanced perfusion-weighted imaging (PWI). Cerebral blood flow (CBF), blood volume (CBV) and mean transit time (MTT) were measured in the gray matter (GM), white matter (WM), normal appearing (NA) GM, NAWM, thalamus, caudate, putamen, globus pallidus, hippocampus, amygdala, nucleus accumbens, red nucleus and substantia nigra. Diagnosis of CCSVI was established based on the venous hemodynamic (VH) Doppler criteria (Zamboni, JNNP, 2009) and the severity was based on fulfilled VH criteria (score 0-5) and VH insufficiency severity score (VHISS) (score 0-16). RESULTS: All 16 MS patients fulfilled the diagnosis of CCSVI (median VH=4, median VHISS=9) and none of the NC. There was a significant association between VH criteria and VHISS, and CBF, CBV and MTT in all examined regions of the brain parenchyma in MS patients. The most robust correlations were observed for lower CBF and higher VHISS in the GM, WM, NAGM and NAWM (r= -0.70 to -0.72, p<0.002), and in the thalamus, caudate, putamen, hippocampus, nucleus accumbens (r= -0.6 to -0.72, p<0.008). The correlation coefficients for CBV and MTT were in a range between r= -0.5 to -0.65. No relationship was observed for NC. CONCLUSIONS/RELEVANCE: This study demonstrates that severity of CCSVI is directly associated with hypoperfusion of the brain parenchyma in MS. Supported by: Hillarescere Foundation and Buffalo Neuroimaging Analysis Center.

OBJECTIVE: To investigate the cerebrospinal fluid (CSF) dynamics in Sylvius aqueduct in multiple sclerosis (MS) patients versus healthy controls (HC) and to define correlates with other specific disease metrics. BACKGROUND: CSF velocity and flow dynamics, as measured by MRI in MS patients, may be impaired and associated with higher disease activity. DESIGN/METHODS: Fifty eight (58) consecutive MS patients (41 RR and 17 SP) with mean age 45.3 yrs, mean disease duration 13 yrs and median EDSS 4.0 and 22 age- and sex-matched HC were scanned on a GE 3T scanner. A two-dimensional, phase-contrast gradient-echo MR acquisition using peripheral cardiac gating, with in-plane resolution 0.39x.039mm2 and 32 phases, corresponding to a full cardiac cycle, was collected on one 4mm thick slice positioned perpendicular to the Sylvius aqueduct. In addition to CSF measures, we calculated T2, T1- and contrast enhancing (CE) lesion volume (LV), global, tissue-specific and central brain atrophy measures. RESULTS: All CSF flow and velocity measures were significantly altered in the patients with MS, compared to HC. Net CSF flow in the aqueduct, which physiologically is towards 4th ventricle, was significantly lower in MS patients than in HC (3.8 vs. 8.4, p=0.011). There were no CSF dynamics differences between RR and SP MS patients. In MS patients, lower net CSF flow was significantly related to a higher number of relapses in the previous year (r=-0.28, p=0.029) and longer disease duration (r=-0.25, p=0.048). The lower CSF flow was related to central atrophy, as measured by the enlargement of the lateral ventricle volume and third ventricle width (r=0.3, p<0.02). CONCLUSIONS/RELEVANCE: This study shows that CSF flow is significantly altered in MS patients, compared to HC. Altered CSF dynamics may play an important role in the pathophysiology of MS disease process and warrants further investigation.

OBJECTIVE: To ascertain the prevalence of chronic cerebrospinal venous insufficiency (CCSVI) in a large cohort of patients with multiple sclerosis (MS), patients with other neurological diseases (OND) and in normal controls (NC), by using specific proposed Doppler criteria (Zamboni et al, JNNP, 2009). BACKGROUND: CCSVI is a complex vascular condition characterized by anomalies of the main extracranial cerebrospinal (CS) venous routes that interfere with the normal CS venous outflow. This condition was previously associated with clinically definite MS. DESIGN/METHODS: Cross-sectional study that will enroll consecutive 1700 subjects at one MS center including: 1000 adult patients with possible and definite MS (50 clinically isolated syndrome, 50 radiologically isolated syndrome, 500 relapsing-remitting, 300 secondary-progressive, 50 primary-progressive MS and 50 neuromyelitis optica). A comparative group will include 300 OND patients and 300 adult age- and sex-matched NC. Fifty pediatric patients (<18 yrs) with acquired demyelinating diseases (MS and acute disseminated encephalomyelitis) and 50 pediatric NC will be assessed. All participants will undergo clinical examination and a Doppler scan of the head and neck. All MS patients and a subcohort of NC and OND will undergo an MRI of the brain. A consecutive subgroup (MS, NC and OND) will have also an MRI of the veins of the neck to corroborate the Doppler diagnosis of CCSVI. The Doppler, and MRI evaluators are blinded to the subject status. The prevalence and severity of venous hemodynamic abnormalities identified in the different groups will be analyzed. Data will be unblinded at three predetermined time-points based on the number of subjects enrolled: at 500, 1000 and 1700 subjects respectively. RESULTS: As of 1 Nov 2009, 473 subjects signed informed consent. The initial interim analysis following the first 500 subjects is scheduled for December 2009. CONCLUSIONS/RELEVANCE: The interim results of the first 500 enrolled subjects will be presented.
(to be presented at the American Annual Neurology Conference in Toronto April 10 - 17, 2010)

OBJECTIVE: To investigate the relationship between chronic cerebrospinal venous insufficiency (CCSVI) and iron deposition in the brain of multiple sclerosis (MS) patients by correlating venous hemodynamic (VH) parameters and iron concentration in deep-gray matter (DGM) structures and lesions, as measured by susceptibility-weighted imaging (SWI). To preliminarily define the relationship between iron measures and disability outcomes. BACKGROUND: CCSVI is a vascular picture recently described in MS patients that is characterized by stenoses affecting the main extracranial venous outflow pathways and by a high rate of cerebral venous reflux that may lead to increased iron deposition in the brain. DESIGN/METHODS: Sixteen (16) consecutive relapsing-remitting MS patients (mean age 36.17.3 yrs, mean disease duration 7.5 1.9 yrs and median EDSS 2.5) and 8 age- and sex-matched normal controls (NC) were scanned on a GE 3T scanner, by using SWI. Iron concentration was measured in the following DGM structures: thalamus, caudate, putamen, globus pallidus, hippocampus, amygdala, nucleus accumbens, red nucleus and substantia nigra. Iron concentration was also measured in T2, T1, SWI phase and SWI magnitude lesions. Diagnosis of the CCSVI was established based on the previously published VH Doppler criteria (Zamboni, JNNP, 2009). RESULTS: All 16 MS patients fulfilled the diagnosis of CCSVI (median VH=4, median VHISS=9) and none of the NC. There was a significant association between higher number of VH criteria and higher iron concentration in T2 (r=0.64, p=0.007) and T1 (r=0.56, p=0.023) lesion volumes. The only DGM structure that correlated significantly with VH criteria was globus pallidus (r=0.58, p=0.019). No relationship was observed for NC. Higher iron concentration in DGM structures was predictive of higher disability status (EDSS) in almost all examined regions. The highest correlations were detected for thalamus (r=0.79, p<0.0001) and red nucleus (r=0.7, p=0.005). CONCLUSIONS/RELEVANCE: The findings from this pilot study suggest that CCSVI may be an important mechanism leading to iron deposition in brain parenchyma of MS patients. In turn, iron deposition, as measured by SWI, is a strong predictor of disability progression in patients with MS. Supported by: Hillarescere Foundation and Buffalo Neuroimaging Analysis Center.

OBJECTIVE: To develop an objective MRI technique for quantifying the cerebrospinal fluid (CSF) flow in Sylvius aqueduct. To apply this technique in a pilot study in multiple sclerosis (MS) patients versus normal controls (NC) and provide further correlates with other MRI specific disease metrics. BACKGROUND: Non-invasive MRI investigation of the CSF dynamics in MS has not been previously reported. DESIGN/METHODS: For consistency and objective quantification of the antegrade (towards 4th ventricle), retrograde (towards 3rd ventricle) and net CSF flow rates, a semi-automated program was developed. The CSF flow quantification technique was validated on a tube phantom, using a power injector which provided a controlled flow rate. 2 NC and 2 MS patients were scanned and rescanned within a week, to test reproducibility. Sixteen (16) consecutive relapsing-remitting MS patients and 8 age- and sex-matched NC were scanned on a GE 3T scanner using a two-dimensional phase-contrast gradient-echo MR technique with high spatial-temporal resolution (in-plane resolution 0.39x.039mm2 and 32 phases, corresponding to a full cardiac cycle) on one 4mm thick slice positioned perpendicular to the Sylvius aqueduct. In addition to CSF flow measures, lesion volume (LV) and atrophy MRI outcomes were calculated. RESULTS: Net CSF flow scan-rescan reproducibility was 10.9%. Net CSF flow rate (stroke volume) was significantly lower in MS patients than in NC (p=0.038). In MS patients, T1-LV was strongly correlated with CSF retrograde (r=0.71, p=0.002) and antegrade flow rates (r=-0.64, p=0.008). T2-LV was also related to CSF flow rate (0.58, p=0.019). Lower net CSF flow rate was related to gray matter (r=-0.63, p=0.009), whole brain and cortical atrophy (p<0.037). CONCLUSIONS/RELEVANCE: CSF flow rate in the Sylvius aqueduct is significantly lower in MS patients than in NC. In MS patients, robust correlations between higher LVs, and advanced atrophy, and altered flow rate measures were found.

Personally, I am convinced it is in the hands of the vascular doctors to help solve this crisis. Vascular specialists need to join the MS Medical Advisory Board. This is where we come in. The more vascular specialists that know about CCSVI the better - this is where we can do some advocating.

The drug companies give money to some doctors (neurologists) who work with MS patients and/or do research for MS (drug research). Some of these doctors and some of the drug company staff comprise the MS Medical Advisory Board. The MS Medical Advisory Board advises the MS Society regarding any medical concerns. The MS Society (funding section) gives money to the drug companies and to some doctors to do research on drugs that might help MS patients. The MS Society (government relations and policy section) informs the Government of Canada about medical concerns regarding MS. The solution I put forward is a huge health dose of Vascular Surgeons and Vascular Specialist into the circle and this will change the course of direction. I think this is our only hope.

I fear the idea of suing the gov or doctors etc. I think this would cost a lot of money, time etc. It could potentially prolong and distract attention away from our goals. I completely understand the decision and the emotions around it - I am in a simular boat as Bill. (Bless you Bill for all the support you have given to your wife - I know first hand your struggle)

I think a part of the resistance we are facing has to do with money and timing. At this present economic time we live in we are facing unusual circumstances - a lot of the baby boomers are retiring and will unfortunately find themselves facing the ills of old age. The Ministry of Health is facing a serious crisis itself. With a large part of the population facing increasing and expensive health care and also paying less into the public purse there is going to be a "top-heavy" burden placed on the Canadian society. With us (the MSers, their children and perhaps their grandchildren) needing testing and probably treatment this adds to the demands for health care - looks like the Health Care dollars will not be anywhere near what is needed. It is my opinion the government needs to re-evaluate how much money is going to Health Care. I am continually told "there is only so much money". But with money well-spent and money being funnelled from other sources we can get through this crisis. We may have to ask ourselves, "Do we really need to know the exact chemical composition of the surface of Pluto at this present time - can we postpone this"? Do we need to be involved supporting external causes at this unique time? It makes sense for a country to extend themselves to help others in need and to increase our scientific knowledge, don't get me wrong these things are all good. I for one love to read about quantum physics and string theory, but when there are 75 thousand MS patients who need testing and treatment it seems that our priorities are mixed up and we need to start asking the hard questions of what is more important? We made need to put some expensive projects on hold for a time until we are not in this unique economic time which is placing extraordinary demands on the Health Care System. Some of the MSers are in end-stage MS - it is impossible for them to fly to another country to get testing and treatment - with the massive amount of research already in hand - no MSer should be denied testing for their CCSVI nor treatment for their CCSVI. Lets get some vascular specialists on board!!!

I keep wondering if CCSVI might be the cause of other autoimmune diseases. Maybe this could explain why the resistance is so strong. Something to think about!

Lets all keep going, keep talking, keep educating, keep supporting each other. I thank you all for all the ideas and work you are all doing regarding CCSVI. I hope I have not offended anyone. I really believe we all need to share our beliefs and thoughts. Like Bill said: a Think Tank. Together we will move forward.

Hi V.T.
User avatar
Family Member
Posts: 31
Joined: Mon Mar 08, 2010 4:00 pm
Location: N of Toronto Canada

Clarifying my thoughts :)

Postby bohemianbill » Sun Apr 04, 2010 11:35 am

I need to clarify my thoughts on why I originally started this thread.

To say I am skeptical that CCSVI research is going to obtain the money and develop the protocol rigors required for the scientific community to actually make conclusions in its relationship to MS are years possible decades off is an understatement.

For argument sake lets say 10-15-20 years down the road the research scientific community as an eureka moment CCSVI has a direct link to MS.
God alleluia, praise the Lord let the suffering stop.

Than in order to actually make the paradigm shift it will take another 10 years for the medical community to get up to speed. Eliminating old protocols establishing new ones.

So as we sit here today we are looking at 15-30 years to turn this ship around. IF it gets turned at all!

I am a Canadian Citizen and because of those rights of citizenship I-We enjoy a quality of life envied by a lot of the world. Let everyone know WE pay for this quality of life. Canada per capita has one of the highest tax rates in the world. We all need to adjust to a new one coming down the pipe July 1,2010
The HST. Point being is we like our quality of life and are willing to pay for it.

As a Canadian we have the Canada Charter of Equal Rights and Freedoms Act, I do not remember ever reading that MS patients due to there special circumstances should NOT be given certain medical procedures.

-Every Individual is Equal, equal Protection, equal Benefit without Discrimination, based on race, national or ethnic origin, color, religion, sex, AGE or (and this is what makes Canada great) Mental or Physical Disability

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

The law seems to be on our side what do we compare it to. How do we show that CCSVI and MS may be on a collision course. This is way off topic but I feel there are some unique similarities. Are You Ready

Yes the 1968 Mexico Summer Olympics, the event High Jumping, like Ms the event had evolved to a pretty standard set of protocols, practitioners emulated each other and each Olympic the hope was through hard training (research) the Bar may get raised.

If you were not like minded the event was pretty low on the Attendance rung (MS apathy). Than out of no were there was a buzz (CCSVI) someone was trying something different, a young athelite by the name of Dick Fosbury (Zamboni) re evaluated why the sport did what it did and could there perhaps be another way.

Well if you have already read the above thread Dick realized that due to new technology (foam landing mats) or CCSVI (MRI,Doppler etc) that a new approach to the bar could be made (same bar! Different approach) same MS different hypothesis

Even in todays modern Olympics the fosbury flop is the ONLY technique used in jumping. Dick Fosbury revolutionized the sport by thinking (outside of the pit:)

As a side note I remember that Olympics and Fosbury like it was yesterday his approach was controversial and yet he raised the bar to Olympic Gold.


Getting back to my original thought.

Discrimination of MS patients in Canada must cease, as per the ERandFA, if stenosis is present treat it.

To put our point across we need to act, asking is not cutting it.

-Canadian MS patients need to obtain in writing a baseline diagnosis of there MS.

- a data bank of all Canadian MS patients and there baseline diagnosis must be filed onto an official record, say a Filing for a potential Class Action Suit, notary republic.

-we communicate our action to those that are preventing MS patients from have extracranial venous blockage treated.

-we in essence raise a legal hammer!

If CCSVI research proves out Zambonis hypothesis and it is found that early diagnosis and treatment of venous blockage is key to the prevention of MS and as the protector of Canadian citizens (Governments, medical associations, Societies whomever) you failed to act. This failure to Act caused Canadians and their families to suffer unnecessarily. There must be accountability.

Like Fosbury we need to think outside of ourselves, I am not talking about badmouthing, disrespecting anyone or organization. I just want us to understand our rights as Canadians. Most of all I want everything we Deserve as Canadians.

All in my opinion

Keep the heat to the feet


Last edited by bohemianbill on Sun Apr 04, 2010 12:12 pm, edited 2 times in total.
User avatar
Family Member
Posts: 81
Joined: Fri Nov 27, 2009 4:00 pm

Postby babiezuique » Sun Apr 04, 2010 11:39 am

It is sunday morning I just finish reading you all... Full of brilliant people...Who are facing the same wall that i'M facing now, knowing that i have a major pathology in my left jugular and every doctors that does not want to treat me.... after all those years with....

1- rebif
2-paxil to help me with the side effetcs of rebif
3-lithium (after paxil...i became so high...
4-seroquel ( because with lithium i was so.....
5- and .....

Now, that i stoped everything, even seeing my neuro;)
I 'm working on being heard on media.... Trying to advocate our case and mine to every body....

Ihave an apointement in poland this next year, but i want to be treated here in my place, in my country were i pay 20 000 $ in tax every year.

People who eat so badly and have cardiac issues are welcome to be treated here in our medical systems... I'm vegeterian, i eat no fat and i have vascular issues... Why nobody want to treat me? It is so unfair....

This wednesday i will be on the radio ( radio canada) at 2 oclock... They will interview me and do you want to know who will be there? My neuro, the one that did nothing for me for ten years, exept signing paper to drive me to hell, literally.... Ihave been through hell.

Now that i have this is ms..... in my life i fell much better because i know i'm not alone;)

User avatar
Family Elder
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal

Postby annad » Sun Apr 04, 2010 11:47 am

Good luck with the interview! Is it in french or english?
You are sooo not alone!
I love these feisty fighting people!
best wishes!
User avatar
Family Elder
Posts: 207
Joined: Sat Nov 21, 2009 4:00 pm
Location: Ontario, Canada

Postby Vhoenecke » Sun Apr 04, 2010 11:56 am

Good Job Barbara,

What time zone is the 2 pm intrerview?
User avatar
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby Johnson » Sun Apr 04, 2010 2:05 pm

SoberSandy - sorry, I was writing in the abstract when I wrote "unproven". It is unproven to Health Canada, and to most medicos. I find it helpful (for myself) to look at situations through the eyes of others. I feel that gives me greater understanding of any situation, and can only help in navigating to a solution.

I have pictures that seem to be stenoses, but taking into account Dr. Sclafani's observations, the real problem might not even be evident on the scans. The only way to really know is to do a catheter venogram. It seems that a lot of doctors are reluctant to do that because CCSVI is unknown, and unproven to them. We have to keep at them, and prove to them the validity. Looking at it from their perspective, there has been a small study (Zamboni), and a few "renegade" doctors doing interventions (with mixed results). Scientists rely on peer-reviewed papers, and there are not many of those that are conclusive enough for many doctors, or the gov't, to proceed. Rici is a case in point - he needs a vein graft into his neck. This has been done thousands of times with coronary arteries, etc., but never in the neck. There is only one team in the world willing to do it. If it is done once, it will be done again, and again, until it is an accepted, and proven therapy.

As much as we all thrill to the stories of those who are treated, we want to believe in it, and I think that a lot are willing to throw caution to the wind. The institutions, on the other hand, have no real reason (or need/desire) to believe something that is not proved by double-blind, peer-reviewed studies. Medical history is full of procedures that were "radical", and took time to become mainstream.

My point was that legal action would be fruitless, and wasted energy, at this point. Ultimately, it is up to the medical community to embrace our cause, and suing them will not help. You cannot force a doctor to perform a procedure that they do not understand, or believe in, by way of a court order. I don't think I'd want to be treated by a doctor who was forced to do so.
My name is not really Johnson. MSed up since 1993
User avatar
Family Elder
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby SoberSandy » Sun Apr 04, 2010 3:45 pm

Hi 'my name is not Johnson' - sorry I misunderstood you! - it is good to post the results of this research though as it gives others a chance to view it who have not yet seen it. This research was performed by peers and will be reviewed by peers at the American Annual Neurology Conference in Toronto April 10 - 17 2010. There are also other doctors who are reviewing the results who have been contacted by those who are spreading the word about CCSVI. These results conclude that the correlation between CCSVI and MS are statistically significant. The following quotes clarify that these results are conclusive - even enough for doctors and the government to take seriously. These results are from the phase two of the study. Quotes from the conclusions of this peer scientific research from the USA:
1) "These findings suggest severely compromised brain venous system in MS patients".
2) "This study demonstrates that severity of CCSVI is directly associated with hypoperfusion of the brain parenchyma in MS".
3) "This study shows that CSF (cerebral spinal fluid) flow is significantly altered in MS patients, compared to HC (normal controls)".
4) "The findings from this pilot study suggest that CCSVI may be an important mechanism leading to iron deposition in brain parenchyma of MS patients. In turn, iron deposition, as measured by SWI, is a strong predictor of disability progression in patients with MS".
5 "CSF flow rate in the Sylvius aqueduct is significantly lower in MS patients than in NC. In MS patients, robust correlations between higher LVs, and advanced atrophy, and altered flow rate measures were found".

The findings of this research is "Supported by: Hillarescere Foundation and Buffalo Neuroimaging Analysis Center". These are highly qualified American Research Scientists. - What more would the doctors here and/or our government need? There is a lot more research results also and also performed by highly qualified doctors/researchers. Passing a new drug in this country takes less research than this. Double-blind studies are for drug research not procedures like heart transplant etc.

Just the same I do agree with you that it is up to the Vascular Medical Community to come on board to make the required changes in direction. I trust the Vascular Medical Community will do what is necessary. The more Vascular Doctors we get involved the quicker changes will take place.
User avatar
Family Member
Posts: 31
Joined: Mon Mar 08, 2010 4:00 pm
Location: N of Toronto Canada

Postby Asher » Mon Apr 05, 2010 12:49 am

Monday morning here in the Netherlands, spring is in the air. Whilst this thread is predominantly Canadian, the similarities between the Canadian and the Dutch realities are striking. Not surprising though. All industrial nations are faced with an ever declining productive work forces on the one hand and older, more vocal populations that are major consumers of costly health care. The situation in The Netherlands is worse than in Canada and the US in so far that in your part of the world there least is some sort of raging debate going on. Our health care too is fully monopolized by government, a medical lobby, and Pharma.

Now Canada is way out of my jurisdiction :wink: , but I do agree that a lawsuit may not be the most effective course of action. It could even backfire and cause people to dig in their entrenched positions.

I agree that the most effective course of action, that could result in a worldwide landslide, is for the WORLDWIDE MS COMMUNITY TO PROVIDE MASSIVE MORAL & FINANCIAL SUPPORT TO THE BRAVE SCIENTISTS AND DOCTORS WHO ARE PIONEERING CCSVI. We need to unite behind the cause. It is a global issue, not local. Governments, the medical profession, pharma, science have all become global enterprises so we need to deploy our global clout – it’s the law of big numbers! If just 200,000 MS patients (out of some 2.5 million worldwide?), caregivers and sympathizers would contribute just $100 a year (=$20,000,000) to a global CCSVI fund we would already come a long way. We would then start to set the agenda!

Is there already an initiative of this kind? Is there a global movement for the rapid advance of CCSVI treatment. It’s the big numbers that we need to translate into power. Please could those who may know shed some light?
User avatar
Family Elder
Posts: 338
Joined: Sun Jan 31, 2010 4:00 pm


Postby BooBear » Mon Apr 05, 2010 5:20 am

Why is it ok to have vein malformations and walk around with them just because I also have MS? Inadequate blood flow is not good for anyone. Would we need studies if I had vein issues and I had diabetes, cancer, over active thyroid???? Why is this pre-existing condition being such a road block to us?

This is exactly how I feel. I can't understand why a vein malformation severe enough to cause collateral veins to form (at the least!) is not worth treating in its own merit. If someone complained of continual headaches and found this condition, they would get tested and treated. But someone with MS- no dice.

The scrutiny around the condition (and all the politics around it) are causing the medical community to shy away from treating this condition versus embracing treatment. Absolute horror.
User avatar
Family Elder
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

Postby Asher » Mon Apr 05, 2010 7:20 am

Ventilating anger and frustration merely provides temporary relief. If CCSVI works (and there is mounting evidence it does) it will eventually become consensus. If we want to speed up the process we need concerted action. It's all about the money... Could anyone please say whether there is some global initiative to pull our resources together and accelerate this process? Thanks, Asher
User avatar
Family Elder
Posts: 338
Joined: Sun Jan 31, 2010 4:00 pm

Postby Vhoenecke » Mon Apr 05, 2010 7:52 am

In Canada we are very locked up in our health care system. It is a great system that causes no stress on patients financially but the only fault I see now is that the professionals are like sheep, they follow. If one of the heads says no to this procedure then no doctor will do it. In the US doctors seem to have some say in what they do. The difference in our countries is that we really can't sue. I have heard of very few if any legal cases against doctors or governments. We don't pay therefore we don't sue.

Being denied care may have to be taken to the governments but they rely on guidance from MS Society and medical professionals that misinform them about the testing and procedures. Maybe we should be seeking council on how to best approach the governments regarding our plight. Not saying that we want to sue just that we don't want to be denied anymore. How about that Maritime Premier that went to the states for heart surgery that could be performed here. Maybe we could start getting referrals to places that will treat us? It is worth a try, get advise. I am sure many lawyers have interest in our situation as many of them may have MS or someone in their family does.

User avatar
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby 1eye » Mon Apr 05, 2010 9:57 am

What a coincidence and serendipity now that I have posted with a lot of other people on What probably tore it for a lot was: ... ikxHCKB8P8 which Rebecca of sent me notice of. I needed to get a few things off my chest. I'm sure there are a lot of other things (surprising how many) on it too (sorry I was just referring to my chest). I contacted Edward Greenspan's office. He is a well-known Canadian civil-rights lawyer in Toronto. I also contacted Harvey Strosburg in Windsor. He is a class-action expert who has done cross-border work (being across from Detroit might help). I don't know if either of them have time for this, but I hope one does. This thread may attract their attention.

It is a global issue. Perhaps Canada is the only country where MS patients are just more fodder for the insurance-claim business that some doctors seem to be in, where tests are ordered for about ten years or so, and then when all of them that can be imagined are done, the patient is finally told they have MS.

I went to see a guy who had been sending me for blood tests very, very often, before I was diagnosed. He had a student there. I guess the student didn't quite know the ropes yet, because he was asking me all these off-the-wall questions, about MS symptoms, which I didn't have for another 5 or more years! I didn't even know what disease they were symptoms of! I guess he knew it was not his place to tell me, though, because nobody in that office ever did say what I had.

Perhaps having the high rate of MS we do here, we are the only country where MS patients are so hopeless and common that we cannot get treated for vein problems because we have another disease that might be related. And where placebo (which has been discredited as a treatment) can be used for years so that drug companies can have bulletproof data to support their cost-saving product ideas. Or where the MS patients are so plentiful that after a few years they can graduate to the lab-mouse farm, and not need to be given any more of those bulletproof drugs, but have very low cognition so they will take anything being worked on this decade.

But what if we're not the only country? Golly, maybe those other folks might like to help!

We're some of us in an odd position. See, it could be argued that some of us (like me) are just in one of the final stages of grief, and really this is just misdirected anger at being dealt a bad hand in life. Well, I take large doses of antidepressants, and maybe this is just anger breakthrough. Maybe some people here are just fine with it, have never been and don't expect to be taken advantage of, since their disease is incurable and who would take advantage of that? The more people I see that have managed to fix the game in their favour, have spent a lot of the only medicine they have left in life (money)and gotten the reward that cannot be bought: improved health, the more I want to say, "screw the medical/drug system, I want to stop my MS." Wait. Not the whole system? Just a few who control many? Oh, all right, at least screw them.

I know, and you know, that there are lots of people in his world (maybe close to you) who could never afford the existing drugs, let alone any new ones. Screw them, too. But this generation has got to get used to spending more money on health because there's going to be less of both to go around. So why try to save money or quality of life or productivity in those hopeless MS patients? I know! There are food shortages all the time. We don't think it's contagious, so why don't we reuse them as food? Do you think they'd keep?

1eye ... 0072c7b085
This is what I got to see on Easter Sunday:

Please read the other MS threads on
User avatar
Family Elder
Posts: 3719
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service