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Time to liberate ‘liberation’ therapy from MS
Posted: Wed Sep 25, 2013 9:14 am
by erinc14
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Thu Sep 26, 2013 1:33 am
by 1eye
Does anybody besides me think we need a National Event here in Canada? I know it's a big country, but I think the sight of wheelchair-bound people in a protest sends a powerful message. An event with Vietnam vets went a long way toward stopping that war.
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Thu Sep 26, 2013 4:23 am
by NHE
Salvatore Sclafani, a Brooklyn-based interventional radiologist, agrees. “We need to put MS on the back burner and focus on the symptoms,” says Sclafani, who has performed some 500 CCSVI treatments. “It’s about whether venous outflow obstructions can result in neurological symptoms. It is about whether opening venous outflow improves some clinical manifestations often seen in MS.” CCSVI has been “politicized, discredited, misunderstood, denigrated, slandered and rejected out of hand,” he says. He would like to see a movement away from whether CCSVI causes MS and toward a focus on the most effective treatment techniques and an understanding of which patients are most likely to benefit. “Failure to do so would do an injustice to those who have venous obstructions of the cerebro-spinal venous outflow,” he says.
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Thu Sep 26, 2013 12:32 pm
by Cece
from the article wrote:Tethering CCSVI to MS created an either-or equation. Either CCSVI caused MS or it didn’t. Either CCSVI was found in people with MS exclusively or it wasn’t. Either CCSVI could cure MS or it couldn’t. Any potential benefit in new insight into the understudied role of the venous system in neurodegeneration was eclipsed. Caught in the middle were people diagnosed with MS, a widely heterogeneous condition, with no cure.
But if it weren't for the tethering of CCSVI to MS, I would not have know to go get that first doppler done. I knew to expect jugular obstructions because that's what was being found in people with MS. The association between CCSVI and MS is provocative but, yes, there is much to learn about CCSVI in its own right and treatment techniques. What I want most is for the vascular experts to get in the ring (annulus) (no, the wrestling ring) because the vascular experts are the ones who can treat this, they are the ones who understand blood flow, they are the ones who can look at an image and judge based on that image. The vascular experts have so much to contribute and it is to our detriment if they allow neurologists to dominate the discussion.
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Thu Sep 26, 2013 5:14 pm
by 1eye
Cece wrote:
But if it weren't for the tethering of CCSVI to MS, I would not have know to go get that first doppler done. I knew to expect jugular obstructions because that's what was being found in people with MS. The association between CCSVI and MS is provocative but, yes, there is much to learn about CCSVI in its own right and treatment techniques. What I want most is for the vascular experts to get in the ring (annulus) (no, the wrestling ring) because the vascular experts are the ones who can treat this, they are the ones who understand blood flow, they are the ones who can look at an image and judge based on that image. The vascular experts have so much to contribute and it is to our detriment if they allow neurologists to dominate the discussion.
Nobody is saying it does or doesn't cause or come from "MS". Dr. Sclafani said it needs to be on the back burner while we study CCSVI. The fact is people who have had it (like me) have had improvements. They sometimes last. Does it matter whether or not it affects some peoples' compliance with drug regimens? Of course. But not for people like me for whom the extent of the neurologists' other offerings is nil. They haven't been able to prescribe me a drug since about 2004. I had upwards of 2 years' CCSVI-induced remission of some very serious symptoms.
When the symptoms return you are reminded in a very sobering way that the remission was real. Two years some didn't want me to have. They have no right to deny people this procedure, in my country on the government's nickel because that's the way we treat people here. Not just some people but all people. It would probably be covered under my private policy as well, except for some egotistical meddlers who make too much money and can't stay away from the news media.
Time to liberate therapy from MS
Posted: Fri Sep 27, 2013 8:18 am
by MarkW
"Tethering CCSVI to MS created an either-or equation. Either CCSVI caused MS or it didn’t. Either CCSVI was found in people with MS exclusively or it wasn’t. Either CCSVI could cure MS or it couldn’t." wrote Anne Kingston.
CCSVI is not exclusive to MS. CCSVI does not cause MS. However treating pwMS with balloon venoplasty is logical. Measuring perfusion in DrS's 500 treated patients against healthy subjects and matched pwMS would give relevant data.
MarkW
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Fri Sep 27, 2013 9:00 am
by Cece
We don't even know whether or not CCSVI is exclusive to MS or whether or not it causes MS, or if it does in a subset of pwMS, only that the ultrasound test is not a good way to attempt to find these answers.
Ideally there would be simultaneous research on every aspect of CCSVI, including techniques, including association with MS, including everything. My problem is letting go of that ideal and working with the reality of the situation as it is, with the contradictory findings and clash of paradigms and lack of funding and hostility from neurologists. I want all the questions answered but I also want a clear path through this.
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Fri Sep 27, 2013 11:30 am
by 1eye
Maxwell Smart:
Would you believe it's a non-disease modifying treatment? How about only if you send two box-tops, a reasonable facsimile of either George Bush, and a stamped, self-addressed envelope? Coming soon to a theater near you?
Oops, I'm late for the bus to Sherbrooke! Sorry about that, Chief...
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Fri Sep 27, 2013 1:07 pm
by MarkW
Cece wrote:We don't even know whether or not CCSVI is exclusive to MS or whether or not it causes MS
Hello Cece,
CCSVI has been found in people who don't have MS. Prof Zamboni calls MS a multifactorial disease. For me, this means CCSVI is not exclusive to MS and CCSVI alone does not cause MS. Just simple logic.
Kind regards,
MarkW
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Tue Oct 01, 2013 8:36 am
by 1eye
For me, it just means "MS" has an unknown cause. If "MS" even exists as a curable or incurable disease with known or unknown causes, except for the people who claim to be necessary to its victims. CCSVI has a number of possible, and known, and verifiable, testable causes, and some as-yet-not-elucidated unknown ones. More than can be said for "MS", but then we aren't getting very wealthy selling patented remedies, disease-modifying or symptomatic, are we?
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Tue Oct 01, 2013 8:44 am
by DougL
MarkW wrote: CCSVI has been found in people who don't have MS...CCSVI alone does not cause MS.
i wonder how many people who do not have MS today but do have CCSVI will some day have MS.
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Tue Oct 01, 2013 11:08 am
by Cece
What else can be made of the number from Dr. Sclafani that 99% of patients that he sees with MS also have jugular/azygous obstructions? That percentage is in close agreement with Dr. Zamboni's original 100%, and that keeps causation around as a possibility.
There are people who smoke but don't get lung cancer or who get lung cancer but never smoked, but there are people who never would have had lung cancer if they hadn't smoked, and it seems reasonable to theorize that there are people who never would have had MS if they hadn't had jugular/azygous obstructions.
Re: Time to liberate ‘liberation’ therapy from MS
Posted: Wed Oct 02, 2013 8:54 am
by erinc14
ad I found . what do you think ?
Chronic Cerebrospinal Venous Insufficiency (CCSVI)
appears to be affecting millions of people who have been
diagnosed with neurological and autoimmune disorders
Venous circulatory problems may be related to many conditions:
Multiple Sclerosis
Chronic Lyme Disease
Chronic Fatigue Syndrome
Parkinson’s Disease
Autism
Amyotrophic Lateral Sclerosis (ALS)
The discovery of CCSVI unveils the blood blockage theory that vascular
abnormalities may be a common factor in many neurological conditions…
Chronic cerebrospinal venous insufficiency occurs when the flow of blood in the cervical and thoracic veins to the heart is compromised. It is proposed that insufficient venous blood flow, can lead to the development of brain and nerve dysfunction. These very important veins can be narrowed, blocked, or even in rare cases missing (never fully developed). It was through the incredible research of Dr. Paulo Zamboni that he uncovered these venous insufficiencies. The initial research was with people who had been diagnosed with Multiple Sclerosis. These same vascular flow abnormalities are now being found in patients with other neurological conditions
.
http://ccsvi-atlanta.org/