AAN early report on 3 CCSVI studies

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

Postby Cece » Fri May 27, 2011 9:46 am

The right jugular vein is more likely to be the bigger one although there is variation. The reason for the right jugular vein being bigger has something to do with the heart. There is really no definition of what is normal or abnormal although it was once said that if the RIJV is more than twice as big as the LIJV then that is abnormal.

Looking forward to whatever papers Cheer has. Associating types of CCSVI with types of MS is of great interest.

With the autoimmune theory of MS there is nothing to explain why someone would have lesions in the brain only and not the spine or why some have RR and some have PP.
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Postby numbness23 » Fri May 27, 2011 9:55 am

cheerleader wrote:
Johnnymac wrote:Why does the right side differ so much from the left side in flow volume (on both pwMS and HC)? Could 'ccsvi' on the right side be more heavily associated with progressive forms of MS since that side seems to carry a larger load?


Johnny--the researchers are looking at this very thing. Siskin and simka and others are finding the right and left variations in CCSVI and trying to see how it links to disability. I'll dig up the papers and be back...
cheer


THis i really struggle with. Cece for example was almost totally blocked in the jugulars and .25 on the EDSS with bionic vision to boot! Sorry but I am not seeing the correlations...
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Re: re

Postby scorpion » Fri May 27, 2011 10:03 am

jean-la-grenouille wrote:I also wonder why pwMS have a higher blood flow when they stand up, compared to ealthy subjects. It is clear that blood flow is important in MS.

The CCSVI research is in an early stage, and original studies have not been replicated so far. However, several studies at least confirme a venous dysfonction among those with MS.

No one can say CCSVI is the cause of MS, nore it is a hoax. Time will tell.
I state CCSVI is more than a hope, it is linked to MS and leads to a better understanding of MS.


The problem I have is that everyones hope is based on Zamboni and his original "trial" results. Even if there is some sort of connection between CCSVI and MS, the myths created during the first few months of Zamboni's press release still remain. I am tird of hearing Zamboni and his buddies come up with lame excuses about body positioning, equipment flaws, and incompetent professionals. Zamboni was somehow able to identify a condition that ALL his subjects had and give it a fancy name using, not the "gold standard" but an ultrasound machine. Wasn't it supposed to be case closed after this discovery?? I have said it before, and actually I think Lyon said it first, CCSVI is in a no lose situation. We seem to be at the point where we want CCSVI to be "it" so badly that people are willing to pour loads of money into research that honestly, if it is possible to seperate yourself frpom the crazy myths and drama surronding CCSVI, looks to be going nowhere. Does anyone think for a second that some of the researchers and bloggers who lived and breathed CCSVI over the last few years will ever admit they MAY have been wrong?? No way. I am not saying CCSVI research should end today becasue who knows maybe there will be some evidence researchers can find about CCSVI that will benefit us but it is time to stop believeing you are going to get any kind of straight talk from people who have egos to big to admit what is really happening.
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Postby 1eye » Fri May 27, 2011 10:04 am

cheerleader wrote:
Johnnymac wrote:Why does the right side differ so much from the left side in flow volume (on both pwMS and HC)? Could 'ccsvi' on the right side be more heavily associated with progressive forms of MS since that side seems to carry a larger load?


Johnny--the researchers are looking at this very thing. Siskin and simka and others are finding the right and left variations in CCSVI and trying to see how it links to disability. I'll dig up the papers and be back...
cheer


Might it have something to do with the place they are draining to? The heart has all its venous stuff on the right.

I have seen foot-drop type one-sided disability on both sides. For me it's the left leg. I can't drive a standard because of that. Don't have a license for either foot.

This would make a very interesting study. The handedness of something should always be very predictable. Does the disability's handedness follow the venous problems? Do lesions follow the handedness of stenoses?
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Postby Cece » Fri May 27, 2011 10:05 am

Bionic vision?? :)
(I have optic neuritis and pars planitis and dulled vision, pre-procedure. Patterns can also make my vision loopy, I just threw out one of my husband's shirts without him knowing because of the stripes. Shhh....)

I had severe jugular stenoses but a large and healthy azygous. My MS had pretty bad cerebral symptoms and fatigue but not the mobility issues.

It's also a snapshot in time; who knows if my severe jugular stenoses would have caused worse disability going forward.
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Postby rainer » Fri May 27, 2011 10:04 pm

I see a lot of mixed results with trends towards an association. That is all fine and well except for the increasing number of people jumping from association to causation to treatment. IMO it is still like volunteering to take any 1 of the many phase 2 drugs out there, only this is more readily available and thus much more appealing.
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Postby Johnnymac » Sat May 28, 2011 7:21 am

I think the patient appeal is two fold:

1) this theory actually makes some sense. Current accepted MS theory of Autoimmune is so underwhelming because all they do is describe the body's response, not the underlying condition which they have not been able to identify. This makes CCSVI easier for the non-scientist to grasp as it actually kind of connects the dots in MS in many ways that autoimmune theory does not.

2) Symptom relief. With many MS patients disability not willing to put its decline on hold for double-blinded randomized clinical trials, any potential relief of symptoms that a fairly safe treatment can provide is going to be flocked to. Even if it doesn't 'cure' MS, (which I think very few would say it does), partial relief from fatigue, heat sensitivity, bladder control problems, etc will make this a very sought after treatment. Heck, MS patients are willing to risk fatal brain infection (my wife was on tysabri for 2 years), the risks of this seem to pale in comparison.
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Treating Symptoms Is Usual Practice

Postby MarkW » Sat May 28, 2011 8:49 am

Treating symptoms is usual practice in healthcare. Please remember this when you seek treatment of CCSVI syndrome. If you have vein problems it is usual healthcare practise to get the symptom treated. Any association between CCSVI and MS may take years to understand. The causes of MS are unknown after 170 years of research, why wait for the researchers ??

Treating CCSVI syndrome is not like the early stages of introducing a new drug in strict phases - 1, 2 3, 4. The therapy (balloon venoplasty) is an established procedure with known risks. Rainer, a pharmaceutical comparision is using an existing drug for an unregistered disease. Neurologists do this all the time in the UK.

So Jonnymac it does not need to make sense (which it does) solely offer symptomatic relief and slow down progression. I agree with you de-stenosis does this.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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re

Postby jean-la-grenouille » Sun May 29, 2011 5:28 am

In these studies, like in others, the results are really different. One team of researchers found no people with MS had CCSVI, an other team found that 67.2% of pwms had CCSVI.

One can not yet conclude about the part of CCSVI in MS. More research is needed.
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Re: Treating Symptoms Is Usual Practice

Postby Lyon » Sun May 29, 2011 5:41 am

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Last edited by Lyon on Wed Jun 22, 2011 3:57 pm, edited 1 time in total.
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Re: re

Postby HarryZ » Sun May 29, 2011 10:26 am

Does anyone think for a second that some of the researchers and bloggers who lived and breathed CCSVI over the last few years will ever admit they MAY have been wrong?? No way. I am not saying CCSVI research should end today becasue who knows maybe there will be some evidence researchers can find about CCSVI that will benefit us but it is time to stop believeing you are going to get any kind of straight talk from people whose egos to big to admit what is really happening.


I suppose if we were to take this approach and apply it to the theory that MS is an auto-immune disease, we could make the same comment. Researchers have been trying to prove the auto-immune theory for some 60 years now and haven't been able to do it. But all of the approved MS drugs are in this category yet look at their poor efficacy and nasty side effects.

Talk about egos and not admitting you are wrong!! Then again, when the MS drug industry has made billions using this theory, they don't care if they are wrong and certainly don't care about any egos as they walk to the bank.

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Postby 1eye » Sun May 29, 2011 10:34 am

I believe he was trying to address those who might be on this forum who were also his patients in a physical setting.

He was also not comparing open label use of drugs to venoplasty for treatment of CCSVI, which Mark was, rather veins to arteries, saying they were not always comparable.

However the usual point about not believing everything you read, especially in my opinion, from certain well-known sources of negativity, is a valid one.

If I were one of those patients I would seriously consider staying off this forum and Facebook until after treatment. Email and telephone would do. But http://www.ccsvi.org is a good one, I think, for general endothelial health issues.
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Postby sou » Sun May 29, 2011 1:29 pm

CCSVI detection via dopler ultrasound is not a straightforward procedure. Instead of blaming Zamboni's "flawed" studies, they could simply do something more productive i.e. perform a neck plethysmogram. This would reveal that there is something really wrong with the flow.

It is easy to perform (2-3 button presses), no special training is required and it provides about 85% sensitivity.

I find all "Zamboni is evil", "CCSVI is trash" discussions really counter productive. Do you want to disprove Zamboni's research? Let a plethysmographer do it.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Cece » Sun May 29, 2011 1:56 pm

Plethysmography only made it onto the radar this March at ISNVD. So we wait for the first plethysmography study to be done (by Zamboni or by the doctor in the UK) then we wait for replication and for that idea to spread. It is all really really slow, I've noticed....
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Postby 1eye » Sun May 29, 2011 2:12 pm

I think the good ship S.S. Disproof sailed a long time ago, without any "MS" neurologists or Disease Modifying Drug vendors on board. It would be good to see clarifications and further explorations, if plethysmography can contribute more information to what is already known, and verify yet again the nature and prevalence of CCSVI using a different instrument, in peer-reviewed studies.
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