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

Postby oreo » Sat May 22, 2010 10:39 am

"Well put and agreed Zeureka! "

Actually Norm, not very well put at all.

A small anatomy / physiology lesson. Oxygen is supplied to the brain the same way it is supplied to the rest of the body (except the lungs) - arterial blood supply. The jugular vein is a drain, not a supply.

Also, if the entire brain does not receive enough oxygen on a continual basis. the standard result is, in order: coma, permanent vegitative state, death. I'm not seeing a lot of that in the MS community.

As an aside, I was reading an Associated Press article this morning about a new test for ovarioan cancer (a major killer of women). They had this to say about the resultsof a US study:

"The study, in more than 3,000 American women, is not big enough to justify screening with this method now. But doctors are encouraged because it confirms early results from a much larger study under way in England that will give a clear answer in a few years."

Please note, they consider a sample size of 3,000 to be SMALL. Can anyone point me to a CCSVI study with at least that many participants?
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Postby NormB » Sat May 22, 2010 11:21 am

Very well put Zeureka and this is my view. Views are respected here on this fine site.



As far as oxygenation or less of it, this scenario is seen daily with heavy smokers but in our case it is 24/7. The smoker get a respite because he has to sleep sometimes.
The drain jugular with ccvi works against the supply by not allowing the blood to circulate at its optimum allowing the less fluent circulation to deposit iron to a surplus level.

That's the way I see the logic behind this as fully explained by Dr Zamboni.

We can agree to disagree Oreo, it is my right and yours and finally not
in the mood to argue this is my final post on this subject thank you.

Take care all

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby zap » Sat May 22, 2010 11:47 am

oreo wrote:To date I have not heard any evidence that the vascular community sees that there is a definitive problem with jugular stenosis.


For what it is worth:

A consensus conference on venous malformations – headed by Prof. Byung B Lee from Georgetown and experts from 47 countries – studied the evidence and unanimously voted in favor of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines.


http://csvi-ms.net/en/content/consensus ... y-iup-2009
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Postby foreignlesion » Sat May 22, 2010 1:47 pm

Any legal action would not only be futile, as Health Canada would easily show that they are proceeding with due diligence, but it could also be very counter productive.

Demonstrating the MS community as a litigous group would instill apprehension in the medical community to move forward with a treatment that is still in experimental stages for fear of lawsuits due to adverse effects which are not yet known.

Yes angioplasty and stenting have been done for decades, but not in this way or for this purpose. It will take many years of further study and research to determine all the risk factors (some might take decades) and to make improvements to the current procedures. The conundrum is that the only way to move forward with these studies is to start treating patients. This will ONLY be done as an experimental treatment in our health care system.

I don't like the snail's pace at which the acceptance of CCSVI is moving any more than anyone else here, but the only REAL option we have is to push for more studies with larger study populations.

I know this isn't what anyone wants to hear, as most of us want to be "liberated" NOW, but this is the reality of our system.
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Postby Zeureka » Sat May 22, 2010 2:09 pm

oreo wrote:"Well put and agreed Zeureka! "

Actually Norm, not very well put at all.

A small anatomy / physiology lesson. Oxygen is supplied to the brain the same way it is supplied to the rest of the body (except the lungs) - arterial blood supply. The jugular vein is a drain, not a supply.

Also, if the entire brain does not receive enough oxygen on a continual basis. the standard result is, in order: coma, permanent vegitative state, death. I'm not seeing a lot of that in the MS community...

And I close it with some statements from Dr Sclafani's thread - answers to our questions on slow flow below. Buona notte and sweet dreams to all !

Dr Sclafani wrote:
"Consider the brain to be like a barrel with two openings. take two hose and place them in the openingsl
push water into one hose and let it drain through the other hose by regulating input and output you can get a steady state to keep the fluid in the barrel to the same level

now block the drainage.
eiither less water can go into the barrel or the barrel will explode.

in the body, if you reduce the amount of blood getting out of the skull, then the amount of blood that gets into the brain must be reduced.

Reducing the blood flow into the brain is a bad thing most of the times. Flow in the carotid and vertebral arteries is essential for brain life.

why? Because oxygen and nutrients get to the brain via the carotid arteries so reducing inflow to the brain leads to inadequate oxygen to the brain. that can lead to cell death or dysfunction."

Dr Sclafani wrote:
"SLOWFLOW If there is resistance to outflow from the brain, this may lead to reduced inflow to the brain. That may lead to reduced oxygen delivery to the brain and cellular function may be compromised without oxygen. and it may ultimately be the cause of deminished brain size. Perhaps it is improvement in blood flow after angioplasty that explains the very rapid improvements in neurofunction that some patients experience. Clarity, return of sensation, etc sometimes are seen before leaving the hospital..."
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Postby NormB » Sat May 22, 2010 8:39 pm

Sorry I digress from my last post being my last post on this topic.
Again very well put Zeureka.

Take care all

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby mangio » Sat May 22, 2010 9:55 pm

Health Canada has nothing to do with approving or blocking a medical procedure. The agency primarily regulates drugs and devices.

Physicians and Surgeons and procedures including imaging are
regulated by another bureau.

Individuals who feel discriminated against for a known health
disorder are justifiably fighting to receive full and equal
treatment for a diagnosed vascular disorder. My mother
had her varicose veins removed twice for cosmetic reasons.

I truly hope this doesn't land in the courts but I certainly
understand the motivation.
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Postby oreo » Sun May 23, 2010 8:37 am

I am oftem amused by how people read something and see only what they want to see. Zeureka posted a quote which I think proves my point. I reproduce the quote below BUT I have put the key words in Bold. I think it changes the entire meaning from Zeureka's interpretation.

Dr Sclafani wrote:
"SLOWFLOW If there is resistance to outflow from the brain, this may lead to reduced inflow to the brain. That may lead to reduced oxygen delivery to the brain and cellular function may be compromised without oxygen. and it may ultimately be the cause of deminished brain size. Perhaps it is improvement in blood flow after angioplasty that explains the very rapid improvements in neurofunction that some patients experience. Clarity, return of sensation, etc sometimes are seen before leaving the hospital..."

There is not a single statment of certitude in the good Doctor's opinion. I think the Doctor is very wise.
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Postby Zeureka » Sun May 23, 2010 1:57 pm

Carpe Diem, you may want to wait and that's OK - certainly noone stopping you from waiting, but I'm taking my flight to Katowice tomorrow morning. Yippeee! Except if the floods would cancel my flight....
This is now really my last comment because we can go on forever....don't take it too serious we can be friends on here or not? :wink:

And sorry for deviating the theme of this thread...we should go back to discussing the key title of thread here...
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perspective

Postby scotland » Wed May 26, 2010 11:16 am

Now, if we took the 800 million they are speding on Security for the G8 meeting in Canada, we could send all 80,000 of we canuks with MS to Poland at 10,000 each for Liberation, correct?
We could arrange a deal I am sure.

So we either spend this protecting eight guys, seven from elsewhere, or fix loyal Canadian tax payers.

Where is the MS person's Security?

Sorry to bitch.
Scotland
P.S. Anyone know where I could rent 200 Boeing 747s?
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Postby Johnson » Wed May 26, 2010 11:43 am

And then there is the close to $1 BILLION spent on Olympics "security". It is like telling your kid that you can't afford toothpaste and toothbrushes because of the cost of the alarm system in the house... or something.

Besides, G8, G20, G7, WTF? What are we benefiting from all that bullshite? Nothing! On the contrary, we are losing our sovereignty, our culture, our jobs, and all the while we bail out banks that keep reporting record profits. Greece took its 8 Billion Euros bail-out and spent it on weapons... to quell their own citizens' dissent?

I'm too disgusted to even swear.
My name is not really Johnson. MSed up since 1993
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Postby BalsaBoy » Wed May 26, 2010 5:14 pm

P.S. Anyone know where I could rent 200 Boeing 747s?



I think British Airways have got a few free at the moment whilst the cabin crew are on strike.
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Postby Pepe » Thu May 27, 2010 2:17 am

markus77 wrote:... there has already been at least 4 studies already done confirming the relationship. Italy, Buffalo, Poland, Mcmasters. ...

At least...correct!...do not forget Jordan and Kuwait.
Regards,
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby Zeureka » Thu May 27, 2010 2:43 am

The "may" and "sometimes" may be true for some people :D One of my room mates that could not get up alone to stand on her feet yesterday, this morning 10 hours after angioplasty even stood up all by herself and walked without her crutches, legs less bent than before also if slowly obviously - to the restroom! - I had seen her walking with crutches before and it was a also a different way of walking/moving legs - And I felt improvement of pins&needles in hands decreasing immediately at the time of and slowly/progressively also the usual permanent sensation of swollen hands going down hour per hour after the intervention...I could hardly fall asleep to monitor that decreasing exceptional sensation...apart from that my usually icecold feet were boiling! And that's for the first day... :D
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Postby frodo » Thu May 27, 2010 6:48 am

foreignlesion wrote:Any legal action would not only be futile, as Health Canada would easily show that they are proceeding with due diligence, but it could also be very counter productive.


I would say that the legal action would be against denials for testing. We have reached a point in which some MS patients are not accepted for vascular tests just because their MS condition.

For sure no organization can claim due diligence without first performing a test.
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