IVCC/CCSVI, articles et liens de ce samedi, petite victoire CCSVI!

Publié le par Handi@dy

 

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*Barre google de traduction indispensable!

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Goodale meets with MS patients considering controversial treatment

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*Liberation Treatment surgery gave her life back

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Liberation Treatment results ‘positive’: patient

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Some Canadian MS patients calling for ‘liberation’ treatment registry

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Manitobans flocking to U.S. clinic

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Charlottetown daughter asks for help for dad

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Results 'positive': patient

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Why no funding for MS?

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Some Thoughts about Media Exposure. by Ken Torbert

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 Plaintiff Search for Angioplasty For All

*"CCSVI: interventions not justified

October 14, 2010

REPORT FROM THE 26TH CONGRESS OF THE EUROPEAN COMMITTEE FOR TREATMENT AND RESEARCH  IN MS (ECTRIMS), GOTHENBURG, SWEDEN, OCTOBER 13-16, 2010 - “We should not be using any interventions to treat CCSVI (chronic cerebrospinal venous insufficiency) until we can demonstrate that it has a pathological role,” stated Dr. Giancarlo Comi, Milan, Italy, at a special symposium organized by the European Charcot Foundation. “CCSVI is not a cause of MS,” he said, “and what is the evidence that it influences the MS disease process?”

“Surgery is not recommended at this stage” Dr. Paulo Zamboni, Ferrara, Italy, said during his presentation. However, he did not endorse the call to end endovascular surgery altogether, stating that it was justified if performed in the context of a clinical trial. Indeed, Zamboni and colleagues have already reported results from a phase I study (Zamboni et al. J Vasc Surg 2009; 1348-1358), and the Endovascular Treatment (EVT) pilot study (Zamboni et al. ECTRIMS 2010; abstract P508). The Prospective Randomized Endovascular Treatment in MS (PREMISE) trial plans to further investigate the clinical effects of surgical intervention.

Prof. Zamboni did not support the “medical tourism” that has seen patients travel to eastern Europe or India for CCSVI surgery, and has criticized the use of stenting, which has been associated with fatal complications.

The Charcot symposium brought together proponents and critics of CCSVI. Dr. Robert Zivadinov, Buffalo, stated that Doppler ultrasonography is more reliable than other techniques (e.g. MR venography. Lopez-Soriano et al. ECTRIMS 2010; abstract P773). This was the method used to assess patients in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study.  According to the most recent results from the first 499 consecutive subjects, CCSVI was found in 56-62% of MS patients compared to 44-46% of patients with other neurological disorders and 22-25% of healthy controls. In a new analysis presented at ECTRIMS, there was no significant difference between subjects with and without CCSVI with respect to number or volume of T1 lesions; T2 lesion number and volume were greater in subjects with CCSVI (Zivadinov et al. ECTRIMS 2010; abstract P318). Zivadinov et al. also reported  increased iron concentrations, as assessed by susceptibility-weighted imaging (SWI), in deep-grey matter (DGM) with an associated decrease in DGM volumes in MS patients versus healthy controls (ECTRIMS 2010; abstract P772), as well as a correlation between iron concentrations and CCSVI (ECTRIMS 2010; abstract P774).

Other speakers at the Charcot symposium noted that the  Zamboni criteria for CCSVI (Zamboni et al. J Neurol Neurosurg Psychiatry 2009; 80: 392-399; free full text at www.ncbi.nlm.nih.gov/pmc/articles/PMC2647682/?tool=pubmed) have not been independently validated. “If CCSVI exists,” said Dr. Omar Khan, Detroit, “is it pathological or simply an anatomical variant?” He added that methods of quantifying iron concentrations have produced highly inconsistent results.

Several negative CCSVI studies were also presented. Doepp and colleagues performed extracranial and transcranial Doppler ultrasound and analysed extracranial venous blood flow in 59 MS patients and 20 controls (ECTRIMS 2010; abstract P579). Stenosis of the internal jugular vein was not detected in any subject and blood volume flow (internal jugular and vertebral veins) in the supine position was comparable for the two groups. Indeed, the decrease in total jugular blood volume flow in moving from the supine to upright positions was less pronounced in MS patients versus controls (173 vs. 362 mL/min).

In a comparison of MS patients and healthy controls using MR venography, 10 of 20 MS patients were classified as having possible/probable venous system abnormalities compared to 8 of 19 healthy controls (Wattjes et al. ECTRIMS 2010; abstract P324), suggesting that venous abnormalities represent anatomical variants rather than clinically relevant venous obstructions.

In addition, a separate study presented at ECTRIMS reported abnormal venous sonographic findings in 52% of patients with clinically isolated syndrome (CIS) suggestive of MS, versus 32% of healthy controls and 68% of patients with transient global amnesia (Baracchini et al. ECTRIMS 2010; abstract 81). A total of 8 of 50 CIS patients (16%) met criteria for CCSVI, a lower proportion than that reported for healthy subjects by Zivadinov and colleagues, indicating that CCSVI does not appear to play a causative role in the pathogenesis of MS.

Audience members at the Charcot symposium were more vocal in their opposition to CCSVI than participants at the AAN’s recent press conference, which generally barred clinicians from attending. At the ECTRIMS event, one U.S. physician criticized the use of the term, “Liberation Treatment”, as grossly misleading. Prof. Zamboni said that it only referred to the liberation of blood flow, but maintained that he does not use the term himself.

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What About The Rising Generation?

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We just had the CCSVI done at the Arizona Heart Institiute on Tuesday

Studies challenge CCSVI theory

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par CCSVI in Multiple Sclerosis, vendredi 15 octobre 2010, à 17:39

----Zivadinov and the BNAC do not recommend MRV technology for follow-up exams.  This is because the results often showed abnormal findings when the doppler ultrasound showed normal findings.

 

Use of magnetic resonance venography for visualisation of the internal jugular veins in patients with multiple sclerosis diagnosed with chronic cerebrospinal venous insufficiency and treated with percutaneous angioplasty

A. Lopez-Soriano, R. Zivadinov, R. Galeotti, D. Hojnacki, E. Menegatti, C. Schirda, A.M. Malagoni, K. Marr, C. Kennedy, I. Bartolomei, C. Magnano, F. Salvi, B. Weinstock-Guttman, P. Zamboni (Buffalo, US; Bologna, IT

 

Background: Chronic cerebrospinal venous insufficiency (CCSVI) was recently described in patients with multiple sclerosis (MS). CCSVI is diagnosed non-invasively by Doppler sonography (DS) and invasively by selective venography (SV). The role of magnetic resonance venography (MRV) in defining presence of CCSVI is not completely elucidated. Objective: To assess the role of MRV for visualization of the internal jugular veins in patients with MS diagnosed with CCSVI and in healthy controls (HC) who obtained serial MRV and DS exams over the period of 12 months. Methods: Ten MS patients diagnosed with CCSVI (as evidenced by DS and SV), and treated with percutaneous angioplasty as part of the endovascular venous treatment MS study (EVTMS), underwent a 2D-Time-Of-Flight venography (TOF), a 3D-Time Resolved Imaging of Contrast Kinetics angiography (TRICKS), DS and SV at baseline. They were re-evaluated 6 months post-treatment with MRV and DS. Four additional MS patients obtained exams post-treatment at 6 and 12 months respectively, without obtaining baseline MRV. Six HC underwent a baseline and a 6-month follow-up evaluation by DS and MRV. The internal jugular veins (IJVs) were examined and compared between MRV, DS and SV. Results: The following observations were found at baseline in MS patients: 1) the overlap between DS and SV findings was 90%, 2) there was no overlap between TOF or TRICKS and DS findings in the IJVs in 85% of the examinations, 3) there was no overlap between TOF and SV in 80% and between TRICKS and SV in 70% of examinations, 4) there was no overlap between both MRV techniques in 22% of the exams. At 6-month follow-up, 20% of the patients showed changes on TOF from normal to abnormal; whereas on TRICKS, 50% of the patients showed changes, 4 of them from normal to abnormal and one from abnormal to normal. On TOF, 50% of the patients showed changes in the IJVs between the 6-month and the 12-month follow-up exams, whereas, 25% of the patients showed changes on TRICKS, being all these changes from normal IJVs to abnormal. Most of these changes did not overlap with DS findings at follow-up examinations. In HC, 50% of the TOF and 41% of the TRICKS showed no overlap with DS findings in IJVs at baseline. At 6-month follow-up, 33% of the HC showed changes from normal to abnormal IJVs and vice versa on TOF and 16% on TRICKS. Conclusion: MRV has limited value to assess CCSVI for both diagnostic and follow-up purposes.

 

-----Here's more from BNAC- they link severity of CCSVI to more advanced disease, disability and age.  

 

Clinical correlates of chronic cerebrospinal venous insufficiency in multiple sclerosis

B. Weinstock-Guttman, G. Cutter, K. Marr, D. Hojnacki, M. Ramanathan, R.H.B. Benedict, C. Morgan, E.A. Yeh, E. Carl, C. Kennedy, J. Reuther, C. Brooks, M. Elfadil, M. Andrews, R. Zivadinov (Buffalo, Birmingham, US)

 

Objectives: To evaluate the clinical correlates of chronic cerebrospinal venous insufficiency (CCSVI) in a large cohort of patients with multiple sclerosis (MS). Background: CCSVI is a complex vascular condition characterized by anomalies of the primary veins outside the skull (Zamboni et al, JNNP, 2009). We previously showed in a pre-planned Combined Transcranial (TCD) and Extracranial Venous Doppler Evaluation (CTEVD) blinded study that the prevalence of CCSVI was significantly higher in the MS cohort vs. healthy controls (HC) (56.1% vs. 22.7%, p< 0.001). Results: This study enrolled 499 subjects; 163 HC, 289 MS patients, 21 CIS patients, 26 subjects with other neurological disorders underwent a clinical examination and a combined Doppler and TCD scan of the head and neck. Thirty patients that were defined as borderline (technical limitation for criteria 2 and not meeting definition of CCSVI) were considered negative for this analysis. CCSVI prevalence was significantly higher in more advanced MS disease subtypes: 89.5% in relapsing secondary-progressive (SP), 67.2% in non-relapsing SP, 54.5% in primary-progressive (PP), 49.2% in relapsing-remitting (RR) and 38.1% in CIS (p = 0.033). The mean venous haemodynamic insufficiency severity score (VHISS) was higher for subjects diagnosed with CCSVI (mean VHISS ± SD: 4.05 ± 1.4, n = 218) than for subjects without CCSVI (1.20 ± 1.0, n = 281; p < .001). Criteria 2, 4 and 5 showed significant associations with an EDSS >=4.0 (Criteria 2: OR of 2.25, p=0.005; criteria 4: OR: 3.28, p=0.004 and Criteria 5 OR: 2.67, p=0.008). MS subjects with CCSVI had significantly higher Pyramidal (p = 0.020), Cerebellar (p = 0.049), and Brain Stem (p = 0.010) EDSS sub-scale score than subjects without CCSVI. Subjects with CCSVI were significantly older than subjects without CCSVI (p = 0.04). However, the mean Multiple Sclerosis Severity Score (MSSS) trended higher for subjects with CCSVI (4.22 ± 2.6, n = 160) than for subjects without CCSVI (3.63 ± 2.4, n =127), but this difference was not significant (p = .073). Conclusions: The presence of CCSVI in MS patients was associated with more advanced MS disease subtypes and more severe motor, cerebellar and brainstem involvement.

 

-----From Dr. Simka's team in Poland, Dr. Simka notes upon venography that the severity of CCSVI did NOT correlate with age of patient of length of disease, but with the severity of occlusion of the internal jugular veins.

 

Correlation of localisation and severity of extracranial venous lesions with clinical status of multiple sclerosis

M. Simka, T. Ludyga, M. Kazibudzki, A. Adamczyk-Ludyga, J. Wrobel, P. Latacz, J. Piegza, M. Swierad (Katowice, PL)

 

Purpose: The discovery of chronic cerebrospinal venous insufficiency (CCSVI), which comprises stenoses in the extracranial veins that drain the central nervous system, has shed new light on the potential source of multiple sclerosis (MS). The aim of this report is to assess the correlations between patterns of CCSVI and clinical characteristics of MS. Methods: Localization and degree of venous outflow blockages in the internal jugular veins (IJV) and the azygous vein (AV) in MS patients was assessed using standard venography. Analysis of clinical parameters of MS included: patients' age, duration of the disease, severity of disability using Multiple Sclerosis Impact Scale-29 (MSIS-29), evaluation of chronic fatigue using Fatigue Severity Scale (FSS), assessment of heat intolerance, and evaluation of the thickness of the ganglion cell complex (GCC) in optical coherence tomography (OCT). Results: A total of 331 MS patients with previously diagnosed CCSVI, using color Doppler sonography and magnetic resonance venography, were evaluated. OCT was performed in 451 eyes. Severity of venous obstacles neither correlated with patients' age, nor did it with duration of the disease. It was also found that neither chronic fatigue, nor heat intolerance correlated with the localization or intensity of venous outflow blockages. On the contrary, more disabled MS patients, as revealed using MSIS-29 questionnaire, were found to suffer from bilateral and/or severe occlusions of the IJVs. Moreover, the patients with stenosed AV presented with the most aggressive clinical course of MS. Pathologic values of GCC were found in 61% of eyes, and this pathology was found more often in the cases with unilateral lesions in the IJV, interestingly: not necessarily at the diseased side. On the contrary, bilateral stenoses in the IJVs correlated with a less frequent pathology of the optic nerves. Stenoses in the AV had no impact on the frequency of pathologic GCC values. Conclusion: It has been revealed that at least some elements of clinical characteristics of MS correlated with parameters of CCSVI. These findings indicate that most likely both pathologies are interconnected and CCSVI may play a role in the pathogenesis and progression of MS. Importantly, venous lesions in differently aged patients were comparable, and severity of venous lesions did not correlate with duration of MS. This finding favors the idea of congenital nature of those vascular malformations. 

 

-----More from Dr. Simka on the safety of endovascular procedures...after 587 procedures!

 

Safety and complications related to endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis patients

M. Simka, T. Ludyga, M. Kazibudzki, M. Hartel, M. Swierad, J. Piegza, P. Latacz, L. Sedlak, M. Tochowicz (Katowice, Zabrze, PL)

 

 Purpose: The aim of this report is to assess the safety of endovascular treatment for chronic cerebrospinal venous insufficiency (CCSVI). Although balloon angioplasty and stenting in other vascular territories are already accepted and seem to be safe procedures, there are currently no data on such treatments of a large group of patients with compromised venous outflow in the internal jugular (IJV) and/or the azygous vein (AV). Methods: A total of 587 endovascular procedures: 414 balloon angioplasties and 173 stent implantations were performed during 361 interventions in 347 CCSVI patients with associated multiple sclerosis. Results: There were only few, rather minor and occasional complications or technical problems related to the procedures. These included: (i) life threatening complications: death - 0, major hemorrhage - 0; cerebral stroke - 0; stent migration - 0; (ii) major complications: early stent thrombosis - 2 (1.2%) (all two occlusions occurred after the stenting for severely hypoplastic internal jugular vein; there were no likely clinical consequences due to these thrombotic events because the veins were not patent before the procedures, and the hemodynamics did not worsen despite the unsuccessful stenting); postoperative false aneurysm in the groin - 2 (0.6%) (successfully treated with thrombin injection); surgical procedure (opening of femoral vein) to remove angioplastic balloon - 1 (0.3%); injury to the nerves - 0; (iii) minor complications: transient cardiac arrhythmia - 2 (0.6%); minor bleeding from the groin - 2 (0.6%); minor gastrointestinal bleeding - 1 (0.3%); postprocedural lymphatic cyst in the groin - 1 (0.3%); problems with the removal of angioplastic balloon or delivery system - 5 (0.9%); unsuccessful catheterization of the stenosed internal jugular vein - 4 (0.7%). Conclusion: Regardless of the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis, which warrants more clinical studies and long term follow-ups, these procedures appeared to be safe and well tolerated by the patients.

 

 

 

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refusal from vascular surgeon

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An Empowering CCSVI Testimonial from Reginald Reiter

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***Big Pharma....Billions...not Millions..learn the difference!

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12 opposing studies maintain differences in belief in CCSVI theory by some investigators.

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 October 15, 2010

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par CCSVI in Multiple Sclerosis, vendredi 15 octobre 2010, à 17:34

As promised yesterday---here are the two new negative studies presented at ECTRIMS.  These are the studies which got the fanfare, and which you will be reading about in the medical press.   This is part of the new approach to disprove CCSVI--by claiming that MS creates venous stenosis--(see the chicken and egg essay from yesterday.)  Now that neurologists realize they can no longer say CCSVI doesn't exist---since too many pwMS around the world know they have it--they are changing the script to say, well, you may have CCSVI, but it's caused by MS.

 

The first study is nominated for a best research prize at ECTRIMS.

The lead investigator is a neurologist at American University in Beirut, and is currently conducting research into stem cell therapies.  Dr. Bassem Yarmout is a neuroscientist, not a vascular doctor or interventional radiologist.  However he worked with his vascular colleagues at the University.

 

This is from a press release from the American University of Beirut--

"In conclusion, this study showed that extracranial venous stenosis is a late manifestation in multiple sclerosis and unlikely to induce a state of chronic cerebrospinal venous insufficiency since only a minority of patients has a single venous stenosis early in the disease. It is more likely to be a secondary phenomenon, possibly present in other neurological diseases, reflecting chronic brain disease and atrophy."....

 

"The extensive network of anastomoses in the cerebrospinal venous system precludes the possibility of cerebrospinal congestion secondary to a single vein stenosis."

http://www.aub.edu.lb/news/archive/preview.php?id=111181

 

--In other words, there are plenty of other veins to drain the brain.   What's one stenotic vein?  It won't be a problem.  The trouble is, CCSVI is not JUST about stenotic veins.  It's about what they create, which is venous REFLUX.  It appears that Dr. Bassem's team did not test for reflux.  He looked for stenotic veins, but that's only part of the story.  There's webs, valves, and, most importantly, flow.  Remember, Dr. Zamboni's words..."it's not about the architecture (stenosis), it's about the flow."   Here's the abstract---

 

 

Pathology 2

Friday, October 15, 2010, 15:30 - 17:00

Chronic cerebrospinal venous insufficiency is an unlikely cause of multiple sclerosis

B. Yamout, A. Herlopian, Z. Issa, R.H. Habib, A. Fawaz, J. Salameh, H. Wadih, H. Awdeh, N. Muallem, R. Raad, A. Al-Kutoubi (Beirut, LB)

 

 Introduction: A state of chronic cerebrospinal venous insufficiency (CCSVI) secondary to extracranial venous stenosis (EVS) was suggested as a possible cause of multiple sclerosis (MS). Methods: In this study we performed selective extracranial venous angiography (SV) on 42 patents with early MS (EMS): clinically isolated syndrome (CIS) or relapsing remitting MS (RRMS) of less than 5 years duration, and late MS (LMS): RRMS of more than 10 years duration. We also reviewed available MRI and clinical relapse data in patients with documented EVS. 

 

Results: EVS was present in 7/29 (24%) patients with EMS and 12/13(92%) patients with LMS, a highly significant statistical difference (p<0.0001). Only 3/42 (7%) patients (all in the LMS group) had 2 vessel stenosis, while the rest had only 1 vessel involved. The incidence of EVS in CIS was 9% compared to 33% in RRMS of less than 5 years duration.

 

The most important factor in determining presence of EVS was disease duration: mean=9.4±6.8 years in 19 patients with EVS compared to 3.2±4.1 years in patients without (p<0.005), which stayed significant after controlling for age at disease onset and gender (p<0.002). Within the EMS group, patients with (n=7) and without (n=22) EVS had similar EDSS (1.43±2.13 and 0.8±0.008, p=0.85) and disease duration (mean =2.1 and 2.4 years, p=0.521), suggesting similar disease severity. The 7 EMS patients with stenosis had a total of 14 relapses since disease onset. No clear correlation could be found between site of EVS and relapse anatomical localization. A total of 97 spine and brain MRIs available since disease onset on all 19 patients with stenosis were reviewed. Again no clear correlation could be seen between the location of gadolinium enhancing (Gd+) lesions and site of EVS. Conclusion: CCSVI is an unlikely cause of MS since it is not present in most cases early in the disease, and in only a minority of MS patients affects more than 1 extracranial vein. It is likely to be a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy.

 

More thoughts on this abstract and how the study was designed--

 

--First of all, there has never been a suggestion that white matter lesions as shown on MRI are indicative of any specific CCSVI stenotic lesion localization.  Looking for a correlation between white matter lesions and stenosis and not finding one, then using that as evidence of lack of importance of CCSVI, is absurd.   Dr. Zamboni has correlated patterns of stenosis and reflux in veins to TYPES of MS....RRMS, SPMS, and PPMS--he cites 4 different patterns of reflux in his research, and ties them to disease type, NOT to MRI LESION LOCATION.  And as many scientists now agree, white matter lesions are not a good biomarker for disability.  Many people with PPMS have few lesions, and more disability.  My husband has over 20 cerebral lesions and is RRMS.   It's not about lesions.  Grey matter atrophy and iron deposition is a much better biomarker for MS progression and disease severity.  This is all a moot point.

 

--Secondly, as Dr. Zamboni has stated time and time again, it is not about stenosis alone, it is about blood FLOW.  It is about reflux and slowed flow.   The doctors treating CCSVI are measuring flow inside the veins,  which can be altered by webs, inverted valves and other anomalies that are not visualized as stenosis.  This study is simply looking at stenosis, not flow.  Will be interesting to read the full paper and see if they even measured flow levels once inside the patients.  

 

--Thirdly, how can this researcher jump to the conclusion, from this small number of patients, that CCSVI is a result of MS?  He calls patients with RRMS for greater than ten years, "late stage MS" and notes that 92% of them have stenotic veins....this is not inconsequential evidence to the reality of CCSVI.  Dr. Simka's much larger study (over 500 patients) says that he found no correlation to age or disease length to severity of disease.

 

And, just in case you wonder who might be paying for all of these venographies (as we know, they ain't cheap), thanks to our reader, David, for providing us the link to the AUB's medical trial funding sources-

http://www.aub.edu.lb/ogc/funding/Pages/agencies.aspx

 

Private - Clinical Funding

 Boston Scientific, Bristol Myers Squibb, Eli Lilly Suisse S.A., Eli Lilly Vienna, Essex Chemie A.G, GlaxoSmithKline, Gulf Pharmaceutical Industries (Julphar), Hoffmann-La Roche Ltd., MERCK,  Merck Europe/FDC - Pharmabel,  Merck Serono International,  Merck Sharp & Dohme Idea Inc (MSD), NOVARTIS, Novartis Pharma Services, Novo Nordisk, Sanofi-Aventis, Sanofi-Synthelabo, Schering AG  , Wyeth Pharmaceuticals

 

 

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The next negative study is from the Neurological MS Clinic at the University of  Padova,  Italy and the MS Center/Neurology Clinic of the Veneto region-- these doctors have worked together before, studying mitoxantrone and cyclophosphamide in MS patients

http://www.ncbi.nlm.nih.gov/pubmed/16609811

http://www.springerlink.com/content/x13x142421767347/

 

 

No evidence of chronic cerebrospinal venous insufficiency in clinically isolated syndrome suggestive of multiple sclerosis

C. Baracchini, P. Perini, M. Calabrese, F. Causin, F. Farina, F. Rinaldi, P. Gallo (Padua, IT)

 

Background: A complex scenario of abnormalities of the cerebrospinal venous outflow termed "chronic cerebrospinal venous insufficiency" (CCSVI), has been reported in patients with multiple sclerosis (MS). Sonographic criteria of CCSVI include reflux in the deep cerebral veins and/or the internal jugular (IJVs) and vertebral veins (VVs), stenosis of the IJVs, missing flow in IJVs and VVs, and inverse postural response of the cerebral venous drainage. 

 

 

CCSVI has been suggested to be the cause of MS, however no data on the prevalence of CCSVI at MS clinical onset has been published up to this date.   In order to demonstrate a possible causative relationship between CCSVI and MS, we performed extra- and transcranial color-coded venous sonography (ECCvS, TCCvS) in clinically isolated syndromes (CIS) suggestive of MS. 

 

Materials and Methods: Fifty consecutive patients with CIS suggestive of MS and evidence of dissemination in space of lesions (i.e., possible MS, pMS) were enrolled into the study. All patients underwent a detailed diagnostic workup, including CSF examination, brain and spinal MRI with gadolinium, ECCvS and TCCvS. Patients with abnormal ultrasound findings underwent selective venography (VGF). 

 

Healthy individuals (HC) and patients with transient global amnesia (TGA) constituted our control groups.

 

--Now, you might be thinking, WHY did they include patients with transient global amnesia (TGA) in the control group??  Transient global amnesia???  They included them,  because they have read (as we all have on this page) Dr. C.P. Chung's research over the past ten years which correlates internal jugular vein valve insufficiency (IJVV) to transient global amnesia. Dr. Chung has noted that those people who have episodes of amnesia have valves in their jugular veins that do not work right when put under pressure.   Dr. Chung's research included venous reflux shown on doppler ultrasound only with VALSALVA MANUEVER.  OK.  What is valsalva manuever and why does this matter?  More to come....

 

Results: Mean age of pMS was 33.0+/-8.5 years, 35 (70%) were female, EDSS was 1.6+/-0.5. The onset was monosymptomatic in 27 (54%). Forty-two (81%) had IgGOB in the CSF. TCCvS was normal in all pMS patients. ECCvS abnormal findings were found in 26/50 (52.0%) pMS, in 32% of HC and in 68% of TGA patients.

 

----The highest number of people with abnormal doppler results were the TGA group.  68% of the TGA patients showed abnormal doppler results.  Why is this important?  Because in order to find abnormal findings in TGA patients, they must have employed valsalva manuever.  THAT's what causes reflux in Dr. Chung's studies.  Valsalva manuever is when you force air against a closed airway...like when you want to unclog your ears on the airplane, so you pinch your nose and blow...This forcing of air is what made the flow reflux in TGA patients in all of Dr. C.P. Chung's studies.

 

Here is Chung on his findings in TGA---he got abnormals using valsalva maneuver-

"Venous reflux in the internal jugular vein branches (JB) was found frequently in patients of certain neurologic disorders. We hypothesized that the retrograde-flow in JB is associated with retrograde hypertension transmitted from the internal jugular vein (IJV), which presumably underlies those neurologic disorders. In this study, we used color-Doppler imaging to evaluate the dynamic venous flow patterns in the IJV and its branches in 50 normal individuals (21 men, 29 women; mean age: 40.9 ± 14.9 y, range: 22 to 70 y). The flow-direction of all detected JB (n = 100) was flowing into the IJV at baseline. During the Valsalva maneuver (VM), 38 JB (38%) had a retrograde-flow. Retrograde-flow in JB was significantly associated with IJV valve incompetence (OR = 7.6; 95% CI = 2.6 to 21.8; p = 0.0002) and greater IJV blood flow volume (blood flow volume >670 mL/min) (OR = 6.6; 95% CI = 1.8 to 24.5; p = 0.0052), both of which may reflect higher IJV pressure transmission during VM. The sonographic findings can be used in the future studies of diseases that are suspected to be related with retrograde cerebral venous hypertension due to an elevated IJV venous pressure."

 

----BUT Dr. Zamboni has stated, you cannot use valsalva manuever to do the doppler tests for CCSVI.  He even references Dr. Chung's papers in his CCSVI research, and says this is different because he does not use valsalva to find CCSVI.  The CCSVI doppler test employs normal inspiration and exhalation.  PwMS show reflux during normal breathing, NOT valsalva.   The fact they found so many abnormal findings in TGA patients in this study raised a red flag to me.  I'll bet you they did the doppler testing using valsalva manuever.  And that makes the rest of the study a moot point.  Because only 8 out of the 50 pwMS showed THEIR version of CCSVI, which was not really CCSVI.  It was reflux due to valsalva manuever.  Ironically, when doing valsalva, many pwCCSVI  open up their veins temporarily and reflux stops for them.  

 

---And now, they do the venography-- 

 

Eight out of 50 pMS patients (16.0%) met the CCSVI criteria: 6 were classified as Type C, one as Type B, one as type A, while none as Type D. VGF was completed in all these patients, except for one who developed a paroxysmal supraventricular tachycardia and the exam was stopped. Venography was normal in 6, while 1 patient had a hypoplasia of the right IJV. Conclusions: Our findings do not support the hypothesis that cerebral venous congestion plays a causative role in the pathogenesis of MS.

 

 

So, here are 2 more negative studies to add to the pile.   Hope the full papers give some more clarification to the testing means, which seem to me, from the abstracts, to have veered from Dr. Zamboni's research once again.

more to come,

Joan

 

 

 

 

 

 

 

 

 

 

 

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par Lorin Powell, samedi 16 octobre 2010, à 03:45

10,15,2010

 

VENOPLASTY FOR SOME

 

 

Health Minister, Ms. Leona Aglukkaq, and provincial health ministers

 

 Hello, I thought it was time for me to give you an update on my wife’s condition after having a venoplasty procedure in San Diego to correct a venous abnormality.  First, I would like you to give me a reason why this procedure is being blocked in Canadian hospitals for people who have been labeled with MS? If someone went into the hospital for a stroke and tested positive for stenosed jugular veins, they would be treated. Why is the Canadian healthcare system denying treatment for a simple venoplasty procedure to restore proper blood flow? Will my wife and thousands of other Canadians ever be entitled to this simple non-invasive procedure?  Or, are they sentenced to have MS permanently tattooed on their forehead? Why is our government allowing this blatant discrimination for a procedure that any Canadian is entitled to, except for those who have been given the label MS?

 

    My wife Jenny had the venoplasty procedure 31 days ago and her circulation has been restored. I will now share with you some amazing things that have occurred in these 31 days.

1. Get in and out of bed without assistance. (Happy back for me)

2. Go the whole day without having to lay down for a rest.

3. Warm hands and feet.

4. Able to walk with two canes instead of relying solely on her powerchair.

5. Not one headache since the procedure (used to have headaches everyday).                      

6. Able to get dressed and put on her shoes unassisted.

7. Happy, instead of being depressed (I am in love with my wife all over again).

8. No fatigue while shopping (Ok I am not so happy about this).

9. Able to carry on a conversation without stopping mid-sentence to word search.

10. Improved balance (e.g. able to stand unassisted).

11. Walking on treadmill and able to stay on longer everyday.

 

      Wow!  What a list of side effects due to proper blood flow.

So, Health Canada, why are you denying a procedure that has been practiced in Canada for years?

 

1.   You can not tell me that the procedure is to risky?

2.   You can not say that it is experimental?

3.   You can not say the side effects of proper blood flow are unknown?

4.    You can not say we are waiting for the neurologists to recommend the venoplasty procedure to correct blood flow in CCSVI sufferers?    

Radiologists restore blood flow!

5.  Are we sentenced to live with MS so others can live off MS?

 

The time for doing the right thing has past. Now it is time to just do it.

 

 

Lorin Powell

Nanaimo BC"

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Manitoba Invests in Multiple Sclerosis Support and Research

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Manitoba ready with funds if clinical trials held for liberation treatment for MS

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Paolo Zamboni and Giancarlo Comi talk CCSVI:

par CCSVI in MS Toronto, vendredi 15 octobre 2010, à 21:27
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At the conclusion of the symposium organized by the European Charcot Foundation - as part of the 26th Congress of the European Committee for Treatment and Research in Multiple Sclerosis - the expert comments on the debate

 

The statements made by Prof. Paolo Zamboni on CCSVI

 

(ANSA) - GOTHENBURG, Oct. 14 - ''Our position is very clear, we do not study to validate the angioplasty itself as to whether this technique for the treatment of venous insufficiency CCSVI chronic cerebro-spinal may be useful to people with multiple sclerosis.'' Said Paolo Zamboni, director of vascular diseases at the University of Ferrara, on the occasion of the International Congress ECTRIMS (The European Committee for Treatment and Research in Multiple Sclerosis), entirely dedicated to Multiple Sclerosis, being held in Gothenburg, Sweden.

 

''The message to give to patients - said Zamboni - is what we should not wait for a cure for the disability. We observed that there are some signs of improvement in the quality of life, for example in chronic fatigue or memory loss. We, at most, we help to prevent disabilities, through this treatment in addition to drug therapy is not interrupted. It scares me to think that the message that angioplasty can cure the disability."

 

The Director of the Centre of Ferrara based his belief in a correlation between the CCSVI and multiple sclerosis, the results of its pilot study in which 300 people were enrolled, including 65 with multiple sclerosis. These 65 patients were treated with angiolastica and after 18 months in cases of relapsing-remitting disease, there was a significant reduction in relapses. But, warns Zamboni, consider that a pilot study "is like a survey that gives some information to figure out whether to go ahead or stop and to understand the scope of a future champion, in a subsequent study, to confirm and, if valid conclusions the pilot study.'' (ANSA).

 

At the same venue Prof Zamboni said even that will start in about a month a study into the effectiveness of the treatment of CCSVI, conducted at the Center for Vascular Diseases, University of Ferrara and approved by the Region Emilia Romagna. One month is the time it takes the ethics committee of Ferrara to begin the trial. 

 

The protocol will be 'controlled trial'. Half of the patients, which at present is not known how many total will receive the experimental treatment using the method Zamboni, while the other half will serve as the control group did not receive the experimental treatment, but only the diagnostic test. The allocation will be done randomly, and patients are not aware of the type of treatment.

 

 

The statements on CCSVI Giancarlo Comi

(ANSA) - GOTHENBURG, Oct. 14 -''The CCSVI is not the cause of multiple sclerosis''and on this conclusion, which the experts have come together in the session dedicated to this disease, the International Congress ECTRIMS,''even Paul Zamboni argued.'' Now''we avoid creating a new case of Bella, we already had one and it is enough.''

 

These are the words that Giancarlo Comi, a neurologist at the University Vita-Salute San Raffaele in Milan said the debate raised by the hypothesis formulated by Zamboni, the correlation between autoimmune disease and cerebro-spinal chronic venous insufficiency, observed by surgeon in some patients.

 

It is quite clear''that there might be some association with the disease - Comi added - but not causal, then it is the task of future studies to ascertain the truth. Creates great expectations among all the Italian multicenter dall'Aism funded, which will be recruited for the 2 thousand people.''

 

According Comi, at this time''there is no room for therapy, it would be crazy because of this condition narrowing of the jugular veins is present in one fourth of normal people. We should cure us all?''.

 

The neurologist, then shares the opinion of the recent National Health Council:''you must first determine whether there is any relationship but I think never, never will be operations for this reason.''

 

Given the large number''of patients involved, the study AISM - concluded Comi - put an end to the controversy, but already the data we have are very clear. And then the Ccsvi was also found in other neurological diseases. The cause-effect relationship does not exist, now no longer supports him.''(ANSA).

 

14/10/2010

 

 

Translated from:

http://www.aism.it/index.aspx?codpage=2010_10_comi_zamboni_ansa"

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par CCSVI in MS Toronto, vendredi 15 octobre 2010, à 21:37

 

 

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This is what emerged at the symposium organized by the European Charcot Foundation, under the most important yearly meeting in Europe on research and treatment of multiple sclerosis

 

Today the scientific community, meeting in Gothenburg on 26 th Congress dell'ECTRIMS, the most important yearly meeting in Europe on research and treatment on multiple sclerosis, meets with a symposium organized by the European Charcot Foundation (of which he is the coordinator prof.OR Hommes), the question 'CCSVI: correlation with Multiple Sclerosis ? 

 

He coordinated the meeting, prof. Giancarlo Comi, and presented the status of research professors P. Zamboni, R. Zivadinov, F. Doepp, O. Kahn, which was followed by interventions of preordered and MP Wattjes CBBeggs and debate with interventions from the audience.

 

The main exponents of the studies undertaken so far have shown the results of their experiments trying to answer questions still open on this issue and sharing the scientific community there CCSVI ? You CCSVI a pathological form independent?It should be treated surgically? It 'a cause or a phenomenon that comes from MS?And 'present only in MS or other neurological diseases or even in healthy people?What is the best diagnostic test to detect the presence of CCSVI?

 

The symposium presented the results today and gave a significant shift towards a common understanding of the scientific community by bringing all these experts to conclude that the state of research available today, CCSVI is not the cause of MS.

 

Based on the studies available today, as previously stated by Prof. Zivadinov, the researchers said CCSVI is present in at least 25% of healthy, besides being present in other neurological diseases. In addition, an Italian research (Baracchini et al.), Which were anticipated results, showed no CCSVI in the CIS, the early forms of multiple sclerosis.

 

The variability in reported prevalence rates of CCSVI in MS has led experts to conclude all the need to establish guidelines on the application of different diagnostic techniques (in other magnetic resonance imaging and venography) in addition to Doppler technique.

 

As underlined during the meeting, to reach certain results on the prevalence and significance of CCSVI is necessary to undertake studies on population samples, with MS and healthy, much more extensive than those used so far: respond to this requirement, as said Professor Comi, Italian multicenter study sponsored and funded dall'AISM.

 

All the experts agreed on the need for the results of these studies before proposing endovascular treatment. Professor Zamboni concluded his report by stating that treatment interventions should be conducted in controlled trials.

 

"Our association with all people with MS following very closely the evolution of knowledge on CSSVI and its implications in MS," he said after the meeting the President of the Italian Multiple Sclerosis Foundation prof. Mario Alberto Battaglia."The consensus reached by the scientific community on this occasion represents an important step to establish the role of CSSVI in multiple sclerosis. Our commitment is to proceed immediately multicenter study funded by our Foundation to be able to give definite answers and safe for people with MS within a year."

 

14/10/2010

 

Source Link:

http://www.aism.it/index.aspx?codpage=2010_10_ccsvi_sm_ectrims "

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par CCSVI in Multiple Sclerosis, samedi 16 octobre 2010, à 04:07

Here's a report on ECTRIMS from a Canadian neurological blog, "Neuro Sens"  My comments/corrections will be in (parenthesis)

http://neuro-sens.com/congress-news/3-general/209224-ccsvi-interventions-not-justified

 

REPORT FROM THE 26TH CONGRESS OF THE EUROPEAN COMMITTEE FOR TREATMENT AND RESEARCH  IN MS (ECTRIMS), GOTHENBURG, SWEDEN, OCTOBER 13-16, 2010 - “We should not be using any interventions to treat CCSVI (chronic cerebrospinal venous insufficiency) until we can demonstrate that it has a pathological role,” stated Dr. Giancarlo Comi, Milan, Italy, at a special symposium organized by the European Charcot Foundation. “CCSVI is not a cause of MS,” he said, “and what is the evidence that it influences the MS disease process?”

 

Several negative CCSVI studies were also presented.

(Actually, there were only 3 negative studies presented, and one of them was the already published Doepp study.  That's more like "a couple."   There were actually several positive studies presented)  

Doepp and colleagues performed extracranial and transcranial Doppler ultrasound and analysed extracranial venous blood flow in 59 MS patients and 20 controls (ECTRIMS 2010; abstract P579). Stenosis of the internal jugular vein was not detected in any subject and blood volume flow (internal jugular and vertebral veins) in the supine position was comparable for the two groups. Indeed, the decrease in total jugular blood volume flow in moving from the supine to upright positions was less pronounced in MS patients versus controls (173 vs. 362 mL/min).

 

In addition, a separate study presented at ECTRIMS reported abnormal venous sonographic findings in 52% of patients with clinically isolated syndrome (CIS) suggestive of MS, versus 32% of healthy controls and 68% of patients with transient global amnesia (Baracchini et al. ECTRIMS 2010; abstract 81). A total of 8 of 50 CIS patients (16%) met criteria for CCSVI, a lower proportion than that reported for healthy subjects by Zivadinov and colleagues, indicating that CCSVI does not appear to play a causative role in the pathogenesis of MS.

 

(We've discussed these three negative studies in the "notes."  It appears that none of them followed Dr. Zamboni's protocol for testing CCSVI--that is, looking for refluxive flow, absent of valsalva manuever.)

 

Audience members at the Charcot symposium were more vocal in their opposition to CCSVI than participants at the AAN’s recent press conference, which generally barred clinicians from attending. A

t the ECTRIMS event, one U.S. physician criticized the use of the term, “Liberation Treatment”, as grossly misleading. Prof. Zamboni said that it only referred to the liberation of blood flow, but maintained that he does not use the term himself.

________________________________________________________________________

 

(There was some anger coming at Dr. Zamboni from the neurological audience.  I find it ironic that a US physician was indignant about the phrase "Liberation Treatment"---a term Dr. Zamboni used to describe a return of blood flow.  This phrase was picked up by the press and is now being mocked by neurologists who seek to demean the research.   Here are some wonderful terms that the Neurological Community has given us for their treatments and  projects---tell me, who uses more "grossly misleading" language?)

 

The EndMS Campaign!! Now taking your donations in Canada!--Since the launch of the endMS capital campaign two years ago, donors from across the country have contributed more than $49.2 million to fund MS research activities and establish the endMS Research and Training Network, a nationwide initiative formed to accelerate discovery in Canadian MS research. 

 

Fast Forward!  Fast Forward, founded by the National MS Society, focuses on expediting the drug development process, bridging the gap between promising discoveries and the commercial expertise and funding to move them forward.  We provide critical funds to academic groups and emerging biotechnology and pharmaceutical companies involved in drug research and development. By connecting people, ideas, and resources, promising drug treatments can now break through barriers, move through the pipeline, and enter clinical trials - faster.

 

CareMS I !--  The purpose of this study is to establish the efficacy and safety of alemtuzumab as a treatment for relapsing-remitting multiple sclerosis (MS), in comparison with Rebif® (interferon beta-1a). 

 

CareMS II I --The purpose of this study is to establish the efficacy and safety of two different doses of alemtuzumab as a treatment for relapsing-remitting multiple sclerosis(MS), in comparison with Rebif® (interferon beta-1a). 

 

RebiSmart! ---The Electronic Device - The RebiSmart™ is an electronic injection device that is being studied for the delivery of Merck Serono's Rebif® New Formulation. The RebiSmart™ device is a stand-alone hand-held device with internal power supply. It is used for subcutaneous (under the skin) injections with single-use sterile disposable needles. The device will be kept in a storage box and placed in the refrigerator after each use.

 

Promess (sounds like promise!)  --The primary objective of this trial is to evaluate the efficacy of IV cyclophosphamide as compared to IV methylprednisolone administered every 4 weeks during 1 year and every 8 weeks during 1 year, on the delay to confirmed disability deterioration as assessed by the Expanded Disability Status Scale (EDSS) in patients with secondary progressive multiple sclerosis.

 

PROOF!  -A Multicenter, Prospective and Retrospective, Long-Term Observational Study of AVONEX® and Rebif® to Determine the Efficacy, Tolerability, and Safety in Subjects With Relapsing Multiple Sclerosis (MS)

 

How dare Dr. Zamboni have called an endovascular procedure which liberates blood flow from diseased veins the "Liberation Treatment"???  Because neurologists are the ones that "care" and are working "fast forward".  They "promess" to "endMS!"

Joan

 

 

 

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*****" Dr. Paolo Zamboni , whose revolutionary research into Multiple Sclerosis suggests that it is a vascular disease rather than a autoimmune condition, is seen here at the American Academy of Neurology Conferece in Toronto Wednesday April 14, 2009. - Dr. Paolo Zamboni , whose revolutionary research into Multiple Sclerosis suggests that it is a vascular disease rather than a autoimmune condition, is seen here at the American Academy of Neurology Conferece in Toronto Wednesday April 14, 2009. | Tim Fraser for The Globe and Mail

‘Liberation therapy’ doctor now warning MS patients to wait

The Italian doctor who gave multiple sclerosis sufferers hope their condition could be treated with a simple procedure – and prompted many of them to cross borders and shell out thousands of dollars to receive it – has now warned patients against receiving the treatment until further clinical trials have been conducted.

Adrian Morrow

Globe and Mail Update
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Aaron Harris, Record News Services
Julie Goodwin, chair of the Wellington County MS chapter, shown at home in Guelph on Wednesday. She is going to Poland in December for an experimental treatment for MS.
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537d35604d378bc502c59b8f53d9.jpeg
Aaron Harris, Record News ServicesJulie Goodwin, chair of the Wellington County MS chapter, shown at home in Guelph on Wednesday. She is going to Poland in December for an experimental treatment for MS.
537d35604d378bc502c59b8f53d9.jpeg
Aaron Harris, Record News Services
click here to expandJulie Goodwin, chair of the Wellington County MS chapter, s ...
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Aaron Harris, Record News ServicesJulie Goodwin, chair of the Wellington County MS chapter, shown at home in Guelph on Wednesday. She is going to Poland in December for an experimental treatment for MS.
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