CCSVI RESEARCH here

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

Re: CCSVI RESEARCH here

Postby CureOrBust » Sat Nov 09, 2013 9:33 pm

This paper is a little old now, and is only a review of other studies. However, it does provide at least two interesting items. The first being that it lists a few ongoing trials which met their criteria for being a valid trial, and the second interesting thing when I was reading it was, in the "Declarations of interest" (ie Conflict of interest) section, one of the authors had undergone the procedure. 8O

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD009903.pub2/full
The basic results are summarised by their statement:
There is currently no high level evidence to support or refute the efficacy and safety of PTA for the treatment of CCSVI in participants with multiple sclerosis.


For example I searched one of the incomplete studies and it gave me https://www.anzctr.org.au/Trial/Registr ... 2000302853 which apears to be a trial by the hospital that actually performed my second procedure. The Dr spoke about this trial he was trying to get started. Obviously he had to get it done OS in New Zealand.
References to ongoing studies
ACTRN12612000302853 {published and unpublished data} ACTRN12612000302853. A randomised, blinded, controlled study of percutaneous transluminal angioplasty (PTA) for extracranial vein stenoses in patients with multiple sclerosis (MS). http://www.anzctr.org.au.
NCT01089686 {unpublished data only} NCT01089686. Study to evaluate treating chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis patients. http://www.clinicaltrials.gov.
NCT01201707 {unpublished data only} NCT01201707. Evaluation of angioplasty in the treatment of chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis. http://www.clinicaltrials.gov.
NCT01371760 {unpublished data only} NCT01371760. BRAVE-DREAMS (BRAin VEnous DRainage Exploited Against Multiple Sclerosis). http://www.clinicaltrials.gov.
NCT01450072 {unpublished data only} NCT01450072. Prospective randomized endovascular therapy in multiple sclerosis - PREMiSE. http://www.clinicaltrials.gov.
NCT01555684 {unpublished data only}
Maybe one of these has completed.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Advertisement

Re: CCSVI RESEARCH here

Postby CaveMan » Mon Nov 11, 2013 10:15 pm

This has already been covered up a bit already,
Just thought I'd post up anyway, I was looking into the whole CCSVI thing to see how it related to my ideas and what basis there was, I never paid much due to it as a causal factor, it did not really seem to fit with what I knew of MS.
The folowing studies seem to confirm my thoughts, that there isn't much evidence as a causal factor, but more so that CCSVI like symptoms may be evident in some individuals and the procedure may help relieve these a bit, but is not a cure.
http://www.ncbi.nlm.nih.gov/pubmed/21280079
http://www.ncbi.nlm.nih.gov/pubmed/23778162
http://www.ncbi.nlm.nih.gov/pubmed/23250108
http://www.ncbi.nlm.nih.gov/pubmed/20127806
I am just an interested individual trying to crack the autoimmune nut.
Partner has Graves Disease, 5 years, showing good test results, looking forward to potential remission in the near future.
3 friends have MS, 1 just recently diagnosed, severity 7/10.
CaveMan
Family Elder
 
Posts: 101
Joined: Sat Apr 28, 2012 9:11 pm

Re: CCSVI RESEARCH here

Postby MSUK » Fri Nov 22, 2013 4:26 am

MS patients did not benefit from CCSVI intervention - PREMiSe study

Multiple sclerosis (MS) is a disease of uncertain etiology characterized by demyelinating lesions affecting the central nervous system. In 2009, Dr. Paolo Zamboni et al described an association between MS and extra cranial venous outflow restrictive lesions detected by extra cranial and intracranial venous duplex studies........ Read More - http://www.ms-uk.org/ccsviresearch
MS-UK - http://www.ms-uk.org/
User avatar
MSUK
Family Elder
 
Posts: 2186
Joined: Wed Oct 14, 2009 3:00 pm

Re: CCSVI RESEARCH here

Postby zjac020 » Fri Jan 03, 2014 2:12 pm

Just came across this basic study. Very interesting although for obvious reasons they avoid making any reference to CCSVI, wonder why...

http://www.nature.com/jcbfm/journal/v34 ... 3161a.html
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 12:50 pm

Re: CCSVI RESEARCH here

Postby CureOrBust » Fri Jan 03, 2014 7:01 pm

zjac020 wrote:Just came across this basic study. Very interesting although for obvious reasons they avoid making any reference to CCSVI, wonder why...

http://www.nature.com/jcbfm/journal/v34 ... 3161a.html

They probably made no explicit reference to CCSVI as they were specifically looking at Arterial, not venous flows.
Alterations in the overall cerebral hemodynamics have been reported in multiple sclerosis (MS); however, their cause and significance is unknown. While potential venous causes have been examined, arterial causes have not. In this study, a multiple delay time arterial spin labeling magnetic resonance imaging sequence at 3T was used to quantify the arterial hemodynamic parameter bolus arrival time (BAT) and cerebral blood flow (CBF) in normal-appearing white matter (NAWM) and deep gray matter in 33 controls and 35 patients with relapsing–remitting MS.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: CCSVI RESEARCH here

Postby MSUK » Tue Jun 03, 2014 2:05 am

Canadian study finds no link between blocked veins, MS

A new Canadian study is casting doubt on the link between blocked neck veins and multiple sclerosis, after finding no difference in the proportion of abnormalities in the veins of MS patients and healthy controls.

The study, published Monday in The Canadian Medical Association Journal, found no link between chronic cerebrospinal venous insufficiency (CCSVI) and MS...... Read More - http://www.ms-uk.org/ccsviresearch
MS-UK - http://www.ms-uk.org/
User avatar
MSUK
Family Elder
 
Posts: 2186
Joined: Wed Oct 14, 2009 3:00 pm

Re: CCSVI RESEARCH here

Postby MSUK » Wed Jul 02, 2014 2:17 am

CCSVI trial reports no benefit with venous angioplasty

Prospective randomized trial of venous angioplasty in MS (PREMiSe).

Siddiqui AH, Zivadinov R, Benedict RH, Karmon Y, Yu J, Hartney ML, Marr KL, Valnarov V, Kennedy CL, Ramanathan M, Ramasamy DP, Dolic K, Hojnacki DW, Carl E, Levy EI, Hopkins LN, Weinstock-Guttman B.

Abstract

OBJECTIVE: We report the results of the investigation of safety and efficacy of venous angioplasty in patients with multiple sclerosis (MS) with findings of extracranial venous anomalies, considered hallmarks of chronic cerebrospinal venous insufficiency (CCSVI), in a 2-phase study (ClinicalTrials.gov NCT01450072)........ Read More - http://www.ms-uk.org/ccsviresearch
MS-UK - http://www.ms-uk.org/
User avatar
MSUK
Family Elder
 
Posts: 2186
Joined: Wed Oct 14, 2009 3:00 pm

Re: CCSVI RESEARCH here

Postby NHE » Wed Jul 02, 2014 9:08 pm

In phase 2, higher MRI activity (cumulative number of new contrast-enhancing lesions [19 vs 3, p = 0.062] and new T2 lesions [17 vs 3, p = 0.066]) and relapse activity (4 vs 1, p = 0.389) were identified as nonsignificant trends in the treated vs sham arm over 6 months.


P = 0.062 might be a "trend," but it's still not statistically different. P = 0.389 is nowhere close to significant. Why did they even bother to report this data? Are they that desperate for anything to be negative about CCSVI?
User avatar
NHE
Volunteer Moderator
 
Posts: 3368
Joined: Sat Nov 20, 2004 4:00 pm

Re: CCSVI RESEARCH here

Postby misslux » Sun Jul 06, 2014 1:01 pm

June 27, 2014

Venous angioplasty for "CCSVI" in Multiple Sclerosis: Ending a therapeutic misadventure (Editorial)

http://www.neurology.org/content/suppl/ ... 000651.pdf
misslux
Family Member
 
Posts: 37
Joined: Fri Jul 04, 2014 7:26 pm
Location: Canada, eh!

Re: CCSVI RESEARCH here

Postby DougL » Mon Jul 07, 2014 4:30 am

misslux wrote:June 27, 2014

Venous angioplasty for "CCSVI" in Multiple Sclerosis: Ending a therapeutic misadventure (Editorial)


IMO bias plays a part in a lot of these papers.

quote - D. Bourdette has received honoraria for consulting and speaking from
BiogenIdec, Teva Neurosciences, and Genzyme and has had research
support from the Department of Veterans Affairs, NIH, and National
MS Society. Dr. Cohen reports personal compensation for consulting
from EMD Serono, Genzyme, Innate Immunotherapeutics, and Novartis.
J.A. Cohen received research support paid to his institution from Biogen
Idec, Consortium of MS Centers, Department of Defense, Genzyme,
NIH, National MS Society, Novartis, Receptos, Synthon, Teva, and
Vaccinex. Go to Neurology.org for full disclosures.
User avatar
DougL
Family Elder
 
Posts: 374
Joined: Mon Jul 11, 2011 3:00 pm

Re: CCSVI RESEARCH here

Postby misslux » Mon Jul 07, 2014 1:33 pm

That might be, but that doesn't have any bearing on the results of the trial that the editorial mentioned though. At least one of the doctors (Zivadinov) was a Zamboni supporter IIRC.

http://www.ncbi.nlm.nih.gov/pubmed/24975855
misslux
Family Member
 
Posts: 37
Joined: Fri Jul 04, 2014 7:26 pm
Location: Canada, eh!

Re: CCSVI RESEARCH here

Postby vesta » Sun Jul 13, 2014 3:59 am

I find a randomized, double blind trial of only 19 persons rather pathetic as a reason to consider the CCSVI theory of no value. And should one be doing sham angioplasties on anyone? Did they consider the possibilty of skeletal obstructions to blood, cerebrospinal fluid flows before treating someone (which would be entirely inappropriate and even dangerous.) ? This editorial is a perfect example of the Neurology lobby wanting to protect their territory rather than seriously consider blood flow therapies as MS treatment (which could include chiropractic, osteopathy etc). IRs themselves (Dr Sclafani) consider the Zamboni Doppler diagnostic inadequate. Many studies finding CCSVI angioplasties of no LASTING value, are forced to admit that after angioplasty patients experience much relief. The problem is, when the veins restenose, the benefits disappear. The question is not, does angioplasty work but how does one make it last (stents etc???). Learning about the blood circulation factor in MS changed my life. I've used non invasive fluid circulation therapies to keep my MS progression under control, but if I thought I had a serious stenosis I would consider angioplasty AFTER confirming that there is no skeletal obstruction. Rather than circle the wagons to keep their pro DMD world view intact, the Neurology lobby should seriously look at Dr George Ebers (Neurologist awarded a prize by the American MS Society) critique of their work

MS Cure Enigmas.net
vesta
Family Elder
 
Posts: 345
Joined: Thu Jul 12, 2012 10:10 am
Location: Paris, France

Re: CCSVI RESEARCH here

Postby BooBear » Tue Aug 12, 2014 3:20 pm

^^^ HERE HERE ^^^^^
Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

Re: CCSVI RESEARCH here

Postby 1eye » Mon Aug 18, 2014 9:23 am

vesta wrote:The problem is, when the veins restenose, the benefits disappear. ... Rather than circle the wagons to keep their pro DMD world view intact, the Neurology lobby should seriously look at Dr George Ebers (Neurologist awarded a prize by the American MS Society) critique of their work.
MS Cure Enigmas.net


To reiterate, HEAR, HEAR.

To be fair, the problem is not limited to neurologists.

When I was young I was continually amazed that my "parents do more drugs than we do." (Dar Williams) Mainly, I was amazed by the number of permanent prescriptions they had. I questioned them then, but I do not believe they questioned them, or that very many patients question them now.

I do know one old woman with terrible health, possibly because she lives with a man who never takes any medication (he's an 84 year year old smoker who drives 1&3 hours to work two days a week, and she is an 86 year old), who mostly keeps all her myriad prescriptions put away unused.

Mainly, though, I think people who have serious ailments blindly do whatever their doctors tell them, because they believe the doctors' advice is all that stands between them and death. The old lady I mentioned above knows (to her own detriment, sometimes) that doctors are not always right, and more importantly, that the treatments are standardized to a statistical norm that is not her.

Sometimes, I believe, patients are so far from that statistical norm, that the treatments are worse than nothing at all.

But I also believe many doctors are unquestioning themselves (too busy, in our cost-driven health model in Canada), and often unnecessarily doom their patients to lifetime prescriptions, whether they continue to need them or not. This practice represents a revenue stream that most drug vendors could not do without. So even though DMDs have an exorbitant price tag, the idea of a "lifetime" prescription is common, and pw'MS' are not alone, there.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2931
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: CCSVI RESEARCH here

Postby CureOrBust » Tue Aug 19, 2014 6:24 am

http://ccsviaustralia.com.au/alfred-hospital-trial-ccsvi-ms/
The Alfred Hospital trial: CCSVI and MS
Following positive results in a pre-trial of 50 people with Multiple Sclerosis (MS) in 2010, The Alfred Hospital commenced a randomised, blinded, controlled study of percutaneous transluminal angioplasty (PTA) for CCSVI in September 2012.
...snip...
We are also pleased that Dr Kavnoudias will be presenting prelimary results at the National CCSVI Society of Canada’s annual conference in October 2014.
With these dates, I would expect the trial and results to have been included previously, but maybe it has more info.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service