CCSVI Neutral or Critical Perspectives

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

Re: CCSVI Neutral or Critical Perspectives

Postby Cece » Mon Jan 09, 2012 2:52 pm

MSBOB wrote: I like the discussion, although I highly doubt that ccsvi will be anymore accepted than chiropractic. I guess the difference is that chiropractors can't cut you open.

Just in case anyone is confused by this statement: angioplasty does not involve being cut open as I'd imagine it. It is a minimally invasive percutanenous outpatient procedure....percutaneous meaning accessed through a needle punch of the skin. There is a needle incision made to the left of the groin, just large enough to get the guidewire and catheter into the vein. After the procedure, you get a band-aid.
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Re: CCSVI Neutral or Critical Perspectives

Postby Lyon » Mon Jan 09, 2012 3:13 pm

Cece wrote: Just in case anyone is confused by this statement: angioplasty does not involve being cut open as I'd imagine it. It is a minimally invasive percutanenous outpatient procedure....percutaneous meaning accessed through a needle punch of the skin. There is a needle incision made to the left of the groin, just large enough to get the guidewire and catheter into the vein. After the procedure, you get a band-aid.

I have to admit that I'm a little confused....Who performs the operations after one has had the minimally invasive venous angioplasty? Would that still be the realm of IR's?
They attempted to get the clot out via open neck surgery which was unsuccessful.
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Re: CCSVI Neutral or Critical Perspectives

Postby Cece » Mon Jan 09, 2012 6:42 pm

I don't know of anyone else who had open neck surgery to treat a complication of CCSVI. Rici? This would seem to be very rare.
Another rare complication was what happened to radeck, which necessitated open heart surgery.
Any procedure would have risks. The problem with the risks associated with CCSVI angioplasty (incision site infection, clotting of the jugulars, tear in the jugulars, subarachnoid hemorrhage as happened to a Canadian patient in California) is that the benefits are not yet established, for weighing benefits vs risks. But there have been safety papers from Dr. Siskin and Dr. Simka, showing the procedure to be safe and well tolerated. It is important to discuss everything with your IR, and make an individual choice.
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Re: CCSVI Neutral or Critical Perspectives

Postby Lyon » Mon Jan 09, 2012 7:19 pm

Cece wrote:I don't know of anyone else who had open neck surgery to treat a complication of CCSVI. Rici? This would seem to be very rare.

I wasn't referring to anyone who has already had neck surgery to correct the issues created by venous angioplasty which as you mentioned has yet to produce documented benefit.

I was referring to (at least) the multiple people we've read about here at thisisms whose neck veins and sometimes stents are clogged as a result of a procedure with no documented benefit.

No doubt the entire theory of CCSVI doesn't hinge on this point so I'm not going to pursue the situation further. My point is that the risk (for no proven benefit) of venous angioplasty involves a little more than surviving the initial procedure, you know it, you knowingly and intentionally minimized it and to me that seems pretty uncaring about the well being of others who are in the search of accurate information.
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Re: CCSVI Neutral or Critical Perspectives

Postby eric593 » Wed Jan 11, 2012 12:07 am

Cece wrote: But there have been safety papers from Dr. Siskin and Dr. Simka, showing the procedure to be safe and well tolerated .


Cece - You are implying that all CCSVI treatments are safe by referring to those safety studies,but you know darn well that those 2 studies don't cover some of the procedures being done, like going up into the sinuses, destroying valves, using extra large balloons or "rendezvous" procedures, or checking iliac, renal or other veins among other things.

We have NO safety studies on much of what other IR's are doing! Rather than mislead people into thinking CCSVI treatment is low risk, don't you think it important to make sure people understand the limits to the studies that HAVE been done and that what many IR's are doing, we have NO studies to know how safe or dangerous those procedures are? And that the risks could rise exponentially due to the nature of what other IR's are doing that goes far beyond Zamboni's original study (or what anyone has ever done) and beyond what is known in terms of risks and outcomes? I mean, the other techniques and treatment approaches are almost if not all INCREASING the risks, not decreasing them.

Rather than pacifying people, isn't it the responsible thing to give people the limits to what we know rather than blurring the information by making incorrect extrapolations from it?
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Re: CCSVI Neutral or Critical Perspectives

Postby Asher » Sun Jan 15, 2012 5:07 am

My p.o.v.:

MS is a tricky disease. It is impossible to take any observation, at any given point in time, at face value. Every patient reporting in this forum is at a different stage of their disease progression. There is no way to tell remission (natural or treatment induced) from placebo, from natural symptomatic fluctuation. This is why anecdotal 'evidence' can be so misleading.

We (the readers and members of this forum, including myself) are so eager to find a cure for this debilitating disease that we often get carried away and make unfounded and unproven statements. We are often tricked by our brains to marginalize risks and ignore evidence that may disproves our whishful thinking. This is why those of us who should know better (including some of the MDs posting on this board - and you too Cece) must protect the readers by exercising caution and responsibility, alerting us to the risks involved and carefully distinguishing fact from fiction and hope from issues on which the jury is still out.

There is no cosmic conspiracy to silence CCSVI advocates. It is just that when one makes a bold claim, one bares the burden of proof. Anecdotal evidence is no evidence, certainly where it comes to an erratic disease such as MS.
Last edited by Asher on Sun Jan 15, 2012 8:38 am, edited 1 time in total.
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Re: CCSVI Neutral or Critical Perspectives

Postby dania » Sun Jan 15, 2012 8:19 am

Asher wrote:My p.o.v.:

MS is a tricky disease. It is impossible to take any observation, at any given point in time, at face value. Every patient reporting in this forum is at a different stage of their disease progression. There is no way to tell remission (natural or treatment induced) from placebo, from natural symptomatic fluctuation. This is why anecdotal 'evidence' can be so misleading.

We (the readers and members of this forum, including myself) are so eager to find a cure for this debilitating disease that we often get carried away and make unfounded and unproven statements. We are often tricked by our brains to marginalize risks and ignore evidence that disproves our whishful thinking. This is why those of us who should know better (including some of the MDs posting on this board - and you too Cece) must protect the readers by exercising caution and responsibility, alerting us about the risks involved and carefully distinguishing fact from fiction and hope from issues on which the jury is still out.

There is no cosmic conspiracy to silence CCSVI advocates. I is just that when one makes a bold claim, one bares the burden of proof. Anecdotal evidence is no evidence, certainly where it comes to an erratic disease such as MS.

Very well put Asher. With me, I find my symptoms and intensity of my symptoms fluctuate so much in a day. From one hour to the next, they can differ.
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Re: CCSVI Neutral or Critical Perspectives

Postby Cece » Sun Jan 15, 2012 11:56 am

It is just that when one makes a bold claim, one bares the burden of proof.

Bold claim: Clearing outflow obstructions from the brain will help blood flow better, relieving symptoms of venous congestion.
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Re: CCSVI Neutral or Critical Perspectives

Postby Asher » Sun Jan 15, 2012 12:25 pm

Bold claim: Clearing outflow obstructions from the brain will help blood flow better, relieving symptoms of venous congestion.


Cece, aren't you abusing your intelligence. If it is only blood flow and venous congestion we are talking about, why is this discourse on the THIS IS MS forum to start with?

Besides, even as far as this venous congestion claim goes there is no concensus in the medical/scientific community. For every claim that CCSVI is a real condition there are a few that dispute this. Also keep in mind that for every anecdotal report of improvement there are a few sad stories of disillusionment. A sample of two recent ones:

Been about 9 month since my azygous was found to be candy-wrapped. 6 mm stent placed. No improvements.
After unsuccessful trip to Poland (where "nothing was found") and a procedure in California (where I can not help but doubt if anything indeed has been done) - I do not have any more money to even go check if the:
1) Stent is indeed there
2) Stent did not move
3) Stent did not get clogged

When I started this thread a year ago, I intended it to be reports from those that it did not work for since it seemed all we heard about was how amazing this treatment was for us with MS. It was not to be a discussion thread per se, as the reports then get lost in all the suggestions and speculations.

Hopefully it can get back to the way it was.

As for me, I have tried twice now, most recently with Dr. Sclafani on Sept 2nd, 2011. At that time DrS ballooned my azygous and right jugular. He attempted a rendevous on my occluded left jug. I was found to have the nutcracker syndrome and he stented that.
I then experienced more core strength for a few weeks and was quite hopeful. However I lost that and am as I was. I am going to have my first followup soon.

I am scared of what the future holds.


I am not arguing one way or another, who am I to do so - I was schooled as a psychologist. I'm just attempting to put this discourse into perspective.
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Re: CCSVI Neutral or Critical Perspectives

Postby shucks » Wed Feb 01, 2012 6:09 pm

I was in a neuro office today and read two different journal articles on how ccsvi was bunk science. Two different articles say that there Is no difference, and the first was from August of 2010. I dont understand the support if hsct and the like are actually proven to be affective. Iam not fighting with anyone, but wouldn't science trump this as proof of efficacy? I hope every day for a cheap and easy solution, but I don't see how this is it.
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Re: CCSVI Neutral or Critical Perspectives

Postby 1eye » Wed Feb 01, 2012 6:31 pm

Asher wrote:
Bold claim: Clearing outflow obstructions from the brain will help blood flow better, relieving symptoms of venous congestion.


Cece, aren't you abusing your intelligence. If it is only blood flow and venous congestion we are talking about, why is this discourse on the THIS IS MS forum to start with?



Because some of the symptoms often attributed to "MS" are identical to those directly traceable to blood flow problems and venous congestion. Because if you want to be skeptical, you have lots of cause to be skeptical of things like diagnoses of "MS", and because there are alternative explanations of the peri-ventricular, peri-venous lesions seen to be indicative of "MS". If you can get the symptoms treated, what does it matter what forum you found a discussion of it on?

I, and others, boldly claim to have had some symptom relief from this procedure. I am not claiming that hsct or whatever else will not do something as well, obviously not for the same reasons. It does not, and would be silly to try to, address the science behind the CCSVI procedure. I think real scientists listen to each other. They are not so interested in defeating other avenues of thought.
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Re: CCSVI Neutral or Critical Perspectives

Postby Progress » Thu Feb 02, 2012 4:30 pm

Hello to all. I work in the field and truly enjoy a majority of the posts and topics here. Some people on this forum are very well educated while others not so much. Perhaps all should do your due diligence and educate yourselves before posting inaccuracies which could most certainly change the mindset of those who could very much benefit from the advancements in Neurovascular Disease. There are extensive trials going on stateside and abroad as well as societies like INSVD ( Int'l Society for Neurovascular Disease which will be holding its 2nd Annual scientific meeting in Orlando, FL this month. Leaders from around the world including Vascular surgeons, Nuerosurgeons, Nueropath, IR's and many more will be attending. Please read up on the objectives, abstaracts, speakers, studies/findings and more. A wealth of information available to all.
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Re: CCSVI Neutral or Critical Perspectives

Postby euphoniaa » Thu Feb 02, 2012 4:59 pm

Progress wrote:Hello to all. I work in the field and truly enjoy a majority of the posts and topics here. Some people on this forum are very well educated while others not so much. Perhaps all should do your due diligence and educate yourselves before posting inaccuracies which could most certainly change the mindset of those who could very much benefit from the advancements in Neurovascular Disease. There are extensive trials going on stateside and abroad as well as societies like INSVD ( Int'l Society for Neurovascular Disease which will be holding its 2nd Annual scientific meeting in Orlando, FL this month. Leaders from around the world including Vascular surgeons, Nuerosurgeons, Nueropath, IR's and many more will be attending. Please read up on the objectives, abstaracts, speakers, studies/findings and more. A wealth of information available to all.


Hello, Progress. I wonder why you're posting on this particular thread? It's a "sticky" thread set up for discussing the not so positive opinions on CCSVI. Actually, I'm not sure which of us you think should diligently educate ourselves, since there are extremely educated posters on both sides of the CCSVI debate. :smile: I'm not sure you're even referring to our CCSVI knowledge or to CCSVI trials.

Anyway, welcome. But my 1st suggestion is that "perhaps" you should post your invitation out in one of the main forums - in the CCSVI Forum if that's all you want to talk about, or in the General Forum here if you're referring to MS in general.

Interesting that your first post was to point out how ignorant many of us are. ThisisMS is a gigantic forum filled with many different perspectives held by some fabulous, intelligent, dedicated, truly amazing people. Most of us don't "work in the field," we live in it - and we do it with as much grace, dignity and strength as we can muster. Give us a break.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: CCSVI Neutral or Critical Perspectives

Postby Progress » Thu Feb 02, 2012 5:08 pm

euphoniaa wrote:
Progress wrote:Hello to all. I work in the field and truly enjoy a majority of the posts and topics here. Some people on this forum are very well educated while others not so much. Perhaps all should do your due diligence and educate yourselves before posting inaccuracies which could most certainly change the mindset of those who could very much benefit from the advancements in Neurovascular Disease. There are extensive trials going on stateside and abroad as well as societies like INSVD ( Int'l Society for Neurovascular Disease which will be holding its 2nd Annual scientific meeting in Orlando, FL this month. Leaders from around the world including Vascular surgeons, Nuerosurgeons, Nueropath, IR's and many more will be attending. Please read up on the objectives, abstaracts, speakers, studies/findings and more. A wealth of information available to all.


Hello, Progress. I wonder why you're posting on this particular thread? It's a "sticky" thread set up for discussing the not so positive opinions on CCSVI. Actually, I'm not sure which of us you think should diligently educate ourselves, since there are extremely educated posters on both sides of the CCSVI debate. :smile: I'm not sure you're even referring to our CCSVI knowledge or to CCSVI trials.

Anyway, welcome. But my 1st suggestion is that "perhaps" you should post your invitation out in one of the main forums - in the CCSVI Forum if that's all you want to talk about, or in the General Forum here if you're referring to MS in general.

Interesting that your first post was to point out how ignorant many of us are. ThisisMS is a gigantic forum filled with many different perspectives held by some fabulous, intelligent, dedicated, truly amazing people. Most of us don't "work in the field," we live in it - and we do it with as much grace, dignity and strength as we can muster. Give us a break.



Thks for the welcome. LOL. I guess these threads from my perspective get a little confusing. Perhaps my comments should have been directed elsewhere. I by no means meant to offend anyone and certainly didnt call out anyone in particular nor did i mention ignorance. Some of my family members live with it as well, and again no disrepect intended! Thks
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Re: CCSVI Neutral or Critical Perspectives

Postby Cece » Fri Feb 03, 2012 3:54 pm

Progress wrote:Hello to all. I work in the field and truly enjoy a majority of the posts and topics here. Some people on this forum are very well educated while others not so much. Perhaps all should do your due diligence and educate yourselves before posting inaccuracies which could most certainly change the mindset of those who could very much benefit from the advancements in Neurovascular Disease. There are extensive trials going on stateside and abroad as well as societies like INSVD ( Int'l Society for Neurovascular Disease which will be holding its 2nd Annual scientific meeting in Orlando, FL this month. Leaders from around the world including Vascular surgeons, Nuerosurgeons, Nueropath, IR's and many more will be attending. Please read up on the objectives, abstaracts, speakers, studies/findings and more. A wealth of information available to all.

Welcome, Progress. Glad you are enjoying the forum. The forum as a whole owes much to the teachings of Dr. Sclafani and to Cheer's original and ongoing contributions. ISNVD has a live webcast patient day scheduled if anyone is feeling inspired to take you up on the challenge of spending less time opining and more time learning.
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