2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

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

2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby dania » Sat Oct 29, 2011 7:37 am

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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby Hooch » Sat Oct 29, 2011 10:00 am

Very interesting interview, well done Sharon - we have come a long way over the past two years in opening up these pathways.
One of the reasons that I have stayed a patient of the neurologist Dr F is because I belive that dialogue beats fighting or withdrawing from meaningful debate.
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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby frodo » Sat Oct 29, 2011 2:39 pm

dania wrote:http://www.youtube.com/watch?v=oL5uqVr07No&feature=share&mid=5137


Thanks for the report. Unfortunately I find it very biased. Every time these two doctors speak about CCSVI they really refer to the angioplasty procedure. They really never speak about the CCSVI condition nor its possible relationship with MS.

We all want a cure for MS, but we all also want an explanation about what MS is.

Neuros alway forget the second question. Every time you ask a neuro about the CCSVI hypothesis the start speaking about the problems of angioplasties instead of discussing pathological data confirming or opposing the hypothesis.

At this time I really have to assume that neuros in general are not very prepared about pathology and they try to avoid the subject. Just my oppinion.
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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby Lyon » Sat Oct 29, 2011 6:33 pm

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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby cheerleader » Sat Oct 29, 2011 6:42 pm

thanks for posting the video, Dania-
CCSVI Alliance is trying to keep the dialogue going between neurologists and vascular specialists. It's not perfect, but we're moving forward.

Frodo is right--the start of this discussion needs to be on what causes CCSVI. The recent findings of truncular venous malformations in autopsied jugular veins of pwMS by neurologists is causing a stir in the world of neurology--this interview came before the ECTRIMS presentation. Of course, Dr. Zamboni and Dr. B.B. Lee were explaining these malformations years ago, but now that they've been "rediscovered" by neuros (like Columbus "discovering" and claiming inhabited land for Spain)--they are "real". Now that doppler studies are finally being done to Dr. Zamboni's specifications, the impact of these malformations is being illucidated. Neurological outcomes after venoplasty will be studied, as well.
We're getting there, and CCSVI Alliance is trying hard to help keep the discussion going,
and I agree---our President, Sharon Richardson, did a terrific job.
http://www.ccsvi.org
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby Lyon » Sat Oct 29, 2011 6:59 pm

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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby frodo » Sun Oct 30, 2011 12:54 pm

Lyon wrote:
cheerleader wrote:Frodo is right--the start of this discussion needs to be on what causes CCSVI. The recent findings of truncular venous malformations in autopsied jugular veins of pwMS by neurologists is causing a stir in the world of neurology--this interview came before the ECTRIMS presentation.
Wellllllll, technically you're both wrong.

The start of any discussion should be on whether or not there even is such a thing as chronic cerebrospinal venous insufficiency and if so, if it affects people with MS at a higher rate/more severely than controls because those are the initial questions to be answered before proceeding any further and SHOULD have been ascertained before things got nearly this far.


Sorry. You are wrong. CCSVI is the status of having two or more positives in the five tests described here [ http://jnnp.bmj.com/content/80/4/392.full ]. Positives in any of those tests have been found even in healthy subjects several times. The only question allowed is whether those positives have a relationship with MS.
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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby Lyon » Sun Oct 30, 2011 1:05 pm

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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby magoo » Sun Oct 30, 2011 3:38 pm

Lyon wrote:
cheerleader wrote:Frodo is right--the start of this discussion needs to be on what causes CCSVI. The recent findings of truncular venous malformations in autopsied jugular veins of pwMS by neurologists is causing a stir in the world of neurology--this interview came before the ECTRIMS presentation.
Wellllllll, technically you're both wrong.

The start of any discussion should be on whether or not there even is such a thing as chronic cerebrospinal venous insufficiency and if so, if it affects people with MS at a higher rate/more severely than controls because those are the initial questions to be answered before proceeding any further and SHOULD have been ascertained before things got nearly this far.


Lyon, if you had MS I believe you would believe differently. Time is brain. We (MSers) take chances each time we try to treat MS. The DMTs and all of the medications we take to get through each day have lots of risks and consequences. We should have the right to decide for ourselves if we choose to move forward with ccsvi treatment. Especially when we have so much personal evidence on which to base our decision. Many probably feel more comfortable taking advice about treating MS from a person dealing with this disease day in and day out, than from a neuro who has HIS best interests in mind. And, by this I mean $$$$$$$$$$.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby scorpion » Sun Oct 30, 2011 4:11 pm

magoo wrote:
Lyon wrote:
cheerleader wrote:Frodo is right--the start of this discussion needs to be on what causes CCSVI. The recent findings of truncular venous malformations in autopsied jugular veins of pwMS by neurologists is causing a stir in the world of neurology--this interview came before the ECTRIMS presentation.
Wellllllll, technically you're both wrong.

The start of any discussion should be on whether or not there even is such a thing as chronic cerebrospinal venous insufficiency and if so, if it affects people with MS at a higher rate/more severely than controls because those are the initial questions to be answered before proceeding any further and SHOULD have been ascertained before things got nearly this far.


Lyon, if you had MS I believe you would believe differently. Time is brain. We (MSers) take chances each time we try to treat MS. The DMTs and all of the medications we take to get through each day have lots of risks and consequences. We should have the right to decide for ourselves if we choose to move forward with ccsvi treatment. Especially when we have so much personal evidence on which to base our decision. Many probably feel more comfortable taking advice about treating MS from a person dealing with this disease day in and day out, than from a neuro who has HIS best interests in mind. And, by this I mean $$$$$$$$$$.



I disagree Magoo. There should be safeguards in place to ensure people with MS are participating in clinical trials that are monitored to ensure patient safety. If not I believe we may end up with a bunch of "witch doctors" peddling cures that may do more harm then good. If there were no rules and regulations in place and we could "decide to do whatever we what to do" there would be quacks out there pushing all kinds of crazy "cures" and no one would know what was legitimate and what was not. I will say it, once again. that trying to demonize neurologists that have doubts about CCSVI does not somehow make the theory of CCVSI any more real. Also please keep in mind MANY of the constant posters in the CCSVI forum do not have MS but some even in fact benefit $$$$$ from the treatment of CCSVI.
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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby magoo » Sun Oct 30, 2011 4:59 pm

Point taken. But, because I am disheartened by neurologists, doesn't mean I am not leery of people trying to profit from ccsvi. There are opportunists everywhere. Unfortunately, in my experience, with neurologists I keep finding the money trail leading right back to pharma. I've been "sold" by more neurologists than I can count.
I understand the safety issues, but this is not a drug. As an MS patient I've had plenty of experience with the risks and side effects of medications for MS or it's symptoms. Heck, i was put on Tysabri when it came to market, and then it was pulled because of the risk. That stuff happens all the time with drugs. Even drugs which have gone through clinical trials.
There is information about angioplasty and stenting, although limited, in veins. It is not completely new territory. I also have the benefit of living each day feeling better since treatment. Nothing has ever helped my symptoms the way this has. Two years and counting and my MRI is clean and I no longer fear a relapse. It's just so different since I was treated. I honestly feel MS is not a factor or a fear in my life since treatment.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Lyon » Sun Oct 30, 2011 5:16 pm

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Re: 2 NEUROLOGIST'S POINTS OF VIEW ON CCSVI

Postby Cece » Sun Oct 30, 2011 9:21 pm

The extreme would be if a person had no cerebral outflow veins at all, which would presumably not be compatible with life. Then there is a continuum between that condition and the not-yet-identified point when there is sufficient unobstructed outflow. Even after CCSVI treatment, we don't have an easy way to quantify if the treatment has been successful, because we don't have the measurement of our total outflow, nor do we know what the norm is to measure it against. What is enough, what is sufficient? If we knew the numbers for what MS patients typical outflow is, we would know what is insufficient or not enough.
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