Findings at FCSC Vancouver/Canada

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

Postby Cece » Thu Jan 28, 2010 11:10 am

Wasn't there someone with too-short jugulars? This would be present all the time but only cut off blood flow when he turned to the left...the effects and occurrence of reflux variable by posture/head position but the underlying malformation always present.
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Postby Zeureka » Thu Jan 28, 2010 11:37 am

Billmeik wrote:hold it. CCSVI testing has totally nothing to do with the state of a patient's MS. If they are benign, or having an attack the CCSVI doesn't change.

Hi Billmeik,
I think to remember that I have read (or heard from a conference report?) somewhere by Zamboni's findings that the severity of the venous defects were somehow linked to the severity of the cause of the disease.

So the more severe the MS, the more vein blockage. I remember this, since made very much sense to me! And Zamboni also found different pattern schemes of vein problems in RR MS and secondary progressive. You can see the venography pic's of the different cases in his key research paper on CCSVI.

However, Zamboni indeed seems to have noticed from his research that whatever form of MS (benign to severe): CCSVI is somehow linked to it. So the testing should be positive. Just: in those that do not have it severe, maybe more difficult to detect the "smaller" vein problem? That's my own thought...

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Postby Jugular » Thu Jan 28, 2010 7:29 pm

cheerleader wrote:If we can stick to facts, not supposition. Chronic cerebrospinal venous insufficiency, as defined by Dr. Zamboni, is present at all times. It is not seasonal or variable. It is more obvious in some MS patients, and MAY be more acute during exacerbations.

...

facts, not guessing-
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Don't mean to belabor the point (I suppose that's exactly what I'm doing), but how is it fact not supposition (rather than the other way around) that CCSVI is present at all times, is not seasonal, and is not variable? Have any studies demonstrated this?
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Postby Billmeik » Thu Jan 28, 2010 8:04 pm

sorry but if MS was neurological it might be subject to lots of variables (and it is kinda) but as a vascular disease we're talking about a plumbing problem. It's there and it stays there all the time and isn't really changed by much. How the CNS reacts to that plumbing problem has lots of variables however. Proof? Well the consensus paper on ccsvi that recently came out called it congenital. That means you are born with it. I guess it could evolve over your lifetime, but more the reaction to it evolves...

Good reply on the 'season' for attacks. To me it just seems natural that it would be the flu season. I guess I stand corrected on that. Would have to read up to add more.


as to the variability zeurika I was talking about within a RRMS patient. Good days/bad days, probably no change to the ccsvi.
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Postby Jugular » Thu Jan 28, 2010 9:34 pm

I still think it's reasonable to suppose that neurological damage would vary with the nature kind and severity of the reflux. Zamboni discovered as much by relating different MS types to obstruction patterns. Blood flow, pressure and volume varies with a host of factors, including environmental, that may influence the severity of iron deposits etc getting on one's nerves.

That the prevailing theory among CCSVI researchers is that the condition is congenital is not 'proof' of anything except that it's their reasonable supposition. It is a hypothesis that has yet to be proven with empirical studies. I like CCSVI precisely because it's mainly empirical data that's driving the bus. For too long we've had to contend with dogmatic think pieces on the cause of our condition. I'd hate to see CCSVI go down the same dead end street.
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Postby Billmeik » Thu Jan 28, 2010 10:09 pm

Blood flow, pressure and volume varies with a host of factors, including environmental, that may influence the severity of iron deposits etc getting on one's nerves.


I agree to "may influence the severity of iron deposits etc getting on one's nerves." we're talking about deposits like sand on the bank of a river that take years to build up, not minutes.

That the prevailing theory among CCSVI researchers is that the condition is congenital is not 'proof' of anything except that it's their reasonable supposition.



the consensus was among vascular experts, not ccsvi researchers. It was an important legitimization for ccsvi when they categorized it as truncular and so congenital.
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Postby cheerleader » Thu Jan 28, 2010 10:15 pm

In this study we described the association between MS and the altered modality of venous return determined by extracranial multiple venous strictures. In our controls, venography resembled the normal imaging of extracranial cerebrospinal veins.25 The hampered cerebrospinal venous drainage in patients with MS determines a complex haemodynamic picture defined as CCSVI. It is characterised by multiple substitute circles, with a very high incidence of reflux in both intracranial and extracranial venous segments, and loss of the postural regulation of cerebral venous outflow.

The mechanism underlying this reflux differs from the reflux caused by incompetence of the jugular valve. In the latter case, valvular insufficiency tested with Valsalva can be related to a picture of transient global amnesia.14 In our study, the reflux occurred in any body position without the need to elicit it by a forced movement, suggesting that it is not an expression of valvular incompetence but rather of a stenosing lesion that cannot be crossed with postural or respiratory mechanisms, thereby becoming a long-lasting reverse flow.

Substitute circles are alternative pathways or vicarious venous shunts29 (fig 3) that allow for the piping of blood toward available venous segments outside the CNS. In accordance with the pattern of obstruction, both the intracranial and the intrarachidian veins can also become substitute circles; they permit redirection of the deviated flow, preventing intracranial hypertension. However, over time, they become overloaded because they carry two different flows, their own draining flow and the shunted flow (fig 3).


http://jnnp.bmj.com/content/80/4/392.full
please read Dr. Zamboni's research. His published papers are the only scientific, peer-reviewed explanation of CCSVI we currently have. Dr. Zamboni and other researchers are currently researching how endothelial disrupters (viruses, bacteria, cigarettes, heavy metals, low vitamin D, etc.) can affect stenosis and perhaps make CCSVI worsen....but the original cause is a stenotic lesion.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: false Creek Studies

Postby TorCan » Fri Jan 29, 2010 6:33 am

Cece wrote:
goddles wrote:The company that makes the transcranial doppler is Esaote.
We are going to look into this doppler.
Our MRV protocol is an adaption for 3T from Dr Haacke


Hopefully it is the transcranial doppler that will make the difference, if you are able to acquire one.

Edited to say: I still see the results from False Creek as being positive for CCSVI. They found 6 confirmed and 15 possibles. There's no control group to show that, on random healthy people, they'd have found 0, but that's the assumption in place from Zamboni's research.


Good morning. My name is Paul and I live in Toronto. I have SPMS and was diagnosed 11 years ago. I went to False Creek to have the MRV test done on me. Vancouver was the only place in Canada that was doing the MRV at the time and that date was December 17th, 2009.
I have an obvious stenosis in the upper portion of my jugular vein. This did not show up on my Ultrasound at all, but it did in the MRV.
I have now found a trial study which is going to India in March to have the liberation treatment done on me. Their is no clinic in the U.S. or Canada that does this treatment at all. This treatment is all out of pocket for me, but I just pray that this is worth it.

This is new for myself, as well as everyone else with MS.

I found this website 2 days ago and it is a pleasure to be chatting with people who understand this :)
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Postby Greenfields » Fri Jan 29, 2010 7:23 am

Cost for going to India? Did they give you a break down?

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Postby TorCan » Fri Jan 29, 2010 7:39 am

Greenfields wrote:Cost for going to India? Did they give you a break down?

Cheers
Brian


The cost is just under $20,000. It includes the flight their, hotel, food and insurance.

The cost for an angioplasty at the Cleveland clinic in Ohio is a little bit less then this, but they have yet to do this in the states. Their is a team of 2 specialists in India. The trip that I am going on is the first wave of patients going their for treatment with more trips to follow up afterwords.

If this works Brian, then I will be sure to tell as many people as I can, so that this treatment will come to Canada even faster.
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Postby LR1234 » Fri Jan 29, 2010 7:56 am

Torcan It might be cheaper for you to look into having the treatment in Poland. Plus you have peace of mnd that the dr's there have treated dozens of patients and are experienced
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Postby TorCan » Fri Jan 29, 2010 8:03 am

LR1234 wrote:Torcan It might be cheaper for you to look into having the treatment in Poland. Plus you have peace of mnd that the dr's there have treated dozens of patients and are experienced


Their is a company called surgicaltours.ca and this place is co-ordinating this treatment.

I got a copy of the resumes of the doctors that are going to work on me. I have the piece of mind knowing that these doctors are very qualified to work in this field.

Thank you for your opinion and I am looking forward to posting on this site that the treatment worked on me.
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Postby Billmeik » Fri Jan 29, 2010 9:07 am

Um I think False creek is playing this game honestly but when someone asked 'isn't it a ripoff to pay for a false negative?" the answer (from my point of view) is yes. These guys have good credentials and they still take 50% of people's money and can't come up with the images.

I am deeply afraid for your 20,000 in India. If you knew for sure that this team has liberated anyone it would help.

I mean Canada is full of really well trained Indian doctors and nurses...but India is a free for all. I spent half a year travelling around there. That something is a ripoff ceases to be surprising. It it the norm. You've got a billion people in an area the size of ontario all competing for bits of nothing.

That said it could go great. Im just afraid for your money.
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Postby tzootsi » Fri Jan 29, 2010 9:42 am

TorCan wrote:
LR1234 wrote:Torcan It might be cheaper for you to look into having the treatment in Poland. Plus you have peace of mnd that the dr's there have treated dozens of patients and are experienced


Their is a company called surgicaltours.ca and this place is co-ordinating this treatment.

I got a copy of the resumes of the doctors that are going to work on me. I have the piece of mind knowing that these doctors are very qualified to work in this field.

Thank you for your opinion and I am looking forward to posting on this site that the treatment worked on me.


Nothing against Indian medicine, but I think it would be well worth it for you yo spend a few days contacting Interventional Radiologists and Vascular Surgeons within a days drive of you. You might be pleasantly surprised at how many might be interested in helping you. As you can see on this forum, there is now a doctor in Albany NY who is now doing the surgery. I believe there is also one in Pennsylvania. The word is really starting to get out, and I can't imagine there wouldn't be a doctor in the Toronto area who wouldn't be interested, especially since you have a confirmed blockage.
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Re: false Creek Studies

Postby Cece » Fri Jan 29, 2010 12:23 pm

TorCan wrote:I found this website 2 days ago and it is a pleasure to be chatting with people who understand this :)


Welcome to the site...I found it four years ago but have no idea what my old login was, so I'm a newbie again these days...it's a very informative place.

I share everyone's caution about surgery in India. Do you know if they are stenting or just doing angioplasty? From what I understand, angio is safer but may only last 50% of the time. It might be a lot to pay if it does not last. Also if you look at Zamboni's research, have all your veins been checked, particularly the pattern that is more common in secondary progressive? Just a concern that you get the full job done, if you're getting it done.

I am trying to find someone locally. My gp has ordered an MRV and I am just hoping/praying for a treatable stenosis to show up.
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