Prof Zamboni - CCSVI Syndrome

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

Prof Zamboni - CCSVI Syndrome

Postby MarkW » Sat Dec 04, 2010 12:05 pm

In a recent paper in Phlebology, Prof Zamboni discusses the CCSVI syndrome. This may sound like trivial detail to some but for me it is an important step in defining acceptable therapies to be used on the syndrome.

PMID: 21106999
Phlebology. 2010;25(6):269-79.
The chronic cerebrospinal venous insufficiency syndrome.
Zamboni P, Galeotti R.

I need to visit the University library to read the whole paper before I comment further.

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: Prof Zamboni - CCSVI Syndrome

Postby malden » Sat Dec 04, 2010 12:30 pm

MarkW wrote:In a recent paper in Phlebology, Prof Zamboni discusses the CCSVI syndrome...

Yes, now I know, it looks to me to like syndrome... Stockholm syndrome:
...a paradoxical psychological phenomenon wherein hostages express adulation and have positive feelings towards their captors that appear irrational in light of the danger or risk endured by the victims, essentially mistaking a lack of abuse from their captors as an act of kindness.
malden
 

Postby TMrox » Sat Dec 04, 2010 12:43 pm

The chronic cerebrospinal venous insufficiency syndrome
P Zamboni and R Galeotti

Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterized by stenosies of the internal jugular and/or azygous veins (IJVs-AZ) with opening of collaterals and insufficient drainage proved by reduced cerebral blood flow and increased mean transit time in cerebral MRI perfusional study.

The present review is aimed to give a comprehensive overview of the actual status of the art of the diagnosis and treatment of this condition.

As far as the origin of venous narrowing is concerned, phlebographic studies of the IJVs and AZ systems demonstrated that venous stenoses were likely to be truncular venous malformations; mostly, they are intraluminal defects such as malformed valve, septa webs. CCSVI condition has been found to be strongly associated with multiple sclerosis (MS), a disabling neurodegenerative and demyelinating disease considered autoimmune in nature.

In several epidemiological observations performed at different latitudes on patients with different genetic backgrounds, theprevalence of CCSVI in MS ranges from 56% to 100%. To the contrary, by using venous MR and/or different Doppler protocols, CCSVI was not detected with the same prevalence.

Two pilot studies demonstrated the safety and feasibility in Day Surgery of the endovascular treatment of CCSVI by means of balloon angioplasty (PTA). It determines a significant reduction of postoperative venous pressure. Restenosis rate was found out elevated in theIJVs, but negligible in the AZ. However, PTA seems to positively influence clinical and QoL parameters of the associated MS and warrants further randomized control trials.
http://phleb.rsmjournals.com/cgi/conten ... t/25/6/269
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby TMrox » Sat Dec 04, 2010 12:48 pm

Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe?
T Ludyga *, M Kazibudzki *, M Simka * , M Hartel , M wierad *,J Piegza *, P Latacz *, L Sedlak * and M Tochowicz *

Objectives: The aim of this report is to assess the safety of endovasculartreatment for chronic cerebrospinal venous insufficiency (CCSVI). Although balloon angioplasty and stenting seem to be safe procedures, there are currently no data on the treatment of a large group of patients with this vascular pathology.

Methods: A total of 564 endovascular procedures (balloon angioplasty or, if this procedure failed, stenting) were performed during 344 interventions in 331 CCSVI patients with associated multiple sclerosis.

Results: Balloon angioplasty alone was performed in 192 cases (55.8%), whereas the stenting of at least one vein was required in the remaining 152 cases (44.2%). There were no major complications (severe bleeding, venous thrombosis, stent migration or injury to the nerves) related to the procedure, except for thrombotic occlusion of the stent in two cases (1.2% of stenting procedures) and surgical opening of femoral vein to remove angioplasticballoon in one case (0.3% of procedures). Minor complications included occasional technical problems (2.4% of procedures): difficulty removing the angioplastic balloon or problems with proper placement of stent, and other medical events (2.1% of procedures): local bleeding from the groin, minor gastrointestinal bleeding or cardiac arrhythmia.

Conclusions: The procedures appeared to be safe and well tolerated by the patients, regardless of the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis, which warrants long-term follow-up.
http://phleb.rsmjournals.com/cgi/conten ... t/25/6/286
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby cheerleader » Sat Dec 04, 2010 3:21 pm

I posted the abstracts and links up on Facebook today-
Those are the first 2 papers from ECTRIMS 2010 which have been published. There has been much more information on CCSVI in the year since Dr. Zamboni's first paper--


Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterized by stenosies of the internal jugular and/or azygous veins (IJVs-AZ) with opening of collaterals and insufficient drainage proved by reduced cerebral blood flow and increased mean transit time in cerebral MRI perfusional study.


When Dr. Zamboni wrote about CCSVI last year, his publication did not discuss the ramifications of slowed or refluxing blood flow. He merely noted that he found stenosis and reflux, which he labeled CCSVI, in all of the pwMS he tested with ultrasound. He also posited that it might be this reflux which lead to iron deposition in the brain, and likened it to venous congestion in the legs. But there are many more measurements now....

Cerebral perfusion is a quantifiable measurement that can be made before and after angioplasty. Mean transit time and oxygenation are also quantifiable measurements. SWI MRI is a quantifiable measurement of iron deposition that can be made before and after angioplasty. It will be these tests, performed with BOLD technology, SWI and fMRI (as included in the Haacke protocol), that will elucidate the connection to brain and spinal damage from CCSVI.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Defining a syndrome

Postby MarkW » Sun Dec 05, 2010 6:34 am

It is important to understand what Prof Zamboni has done by calling CCSVI a syndrome. He has removed the need to identify the underlying cause(s). I hope the definition below helps.
For me, treating the CCSVI syndrome with Balloon Venoplasty before understanding the causes of CCSVI is essential for pwMS. Otherwise we will be waiting for years, maybe decades before therapy is offered to most pwMS.

MarkW

Extract from:
http://www.wikidoc.org/index.php/Syndrome

In medicine and psychology, the term syndrome refers to the association of several clinically recognizable features, signs (discovered by a physician), symptoms (reported by the patient), phenomena or characteristics which often occur together, so that the presence of one feature alerts the physician to the presence of the others. In recent decades the term has been used outside of medicine to refer to a combination of phenomena seen in association.

In technical medical language, a "syndrome" refers only to the set of detectable characteristics. A specific disease, condition, or disorder may or may not be identified as the underlying cause. Confusingly, even once a physical cause has been identified, the word "syndrome" is sometimes kept in the name of the disease. Subjective medical conditions are not supported by evidence of an underlying physical cause.
========================
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: Defining a syndrome

Postby scorpion » Sun Dec 05, 2010 7:37 am

MarkW wrote:It is important to understand what Prof Zamboni has done by calling CCSVI a syndrome. He has removed the need to identify the underlying cause(s). I hope the definition below helps.
For me, treating the CCSVI syndrome with Balloon Venoplasty before understanding the causes of CCSVI is essential for pwMS. Otherwise we will be waiting for years, maybe decades before therapy is offered to most pwMS.

MarkW

Extract from:
http://www.wikidoc.org/index.php/Syndrome

In medicine and psychology, the term syndrome refers to the association of several clinically recognizable features, signs (discovered by a physician), symptoms (reported by the patient), phenomena or characteristics which often occur together, so that the presence of one feature alerts the physician to the presence of the others. In recent decades the term has been used outside of medicine to refer to a combination of phenomena seen in association.

In technical medical language, a "syndrome" refers only to the set of detectable characteristics. A specific disease, condition, or disorder may or may not be identified as the underlying cause. Confusingly, even once a physical cause has been identified, the word "syndrome" is sometimes kept in the name of the disease. Subjective medical conditions are not supported by evidence of an underlying physical cause.
========================


Mark once again you are putting the horse before the cart when you say CCSVI should be treated before understanding the causes of CCSVI. The points below need proven first. From what I see Zamboni and his circle of friends are still stuck on how to convince their peers that number one is even true.

1. CCSVI is an actual condition that exists.
2. CCSVI is some how associated with MS.
3. CCSVI, if it exists, can be treated.
4. CCSVI, if it exists and can be treated, will benefit people with MS.

Maybe Zamboni can start with proving number one to other researchers? At this point it seems it is a matter of some people saying "I see it" and others saying "huh?"
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Postby CCSVIhusband » Sun Dec 05, 2010 8:43 am

Keep moving that line scorpion ... it's noble work you're doing ... :roll:

re #1: Do you have some capability to block out everything that has been presented to this point? A LOT of doctors - unrelated to Dr. Zamboni have found CCSVI ... my wife's doctor has never met Dr. Zamboni, but found CCSVI ... strange isn't it?


re #2: Your study that you debated (Doepp I believe) linked CCSVI to MS ... so #2 has been proven.


re #3: Ask anyone who has been liberated if CCSVI can be treated. I'm sure it can't in all cases (like a vein that never grew) ... but in a lot, it can. Please ask Dr. Sclafani

re #4: Again, I guess all these people liberated and getting these results are just nuts.

Keep confusing anyone looking for new information ... everyone who has been here for more than a few months sees right through your stale arguments. :lol:
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Postby scorpion » Sun Dec 05, 2010 9:02 am

CCSVIhusband wrote:Keep moving that line scorpion ... it's noble work you're doing ... :roll:

re #1: Do you have some capability to block out everything that has been presented to this point? A LOT of doctors - unrelated to Dr. Zamboni have found CCSVI ... my wife's doctor has never met Dr. Zamboni, but found CCSVI ... strange isn't it?


re #2: Your study that you debated (Doepp I believe) linked CCSVI to MS ... so #2 has been proven.


re #3: Ask anyone who has been liberated if CCSVI can be treated. I'm sure it can't in all cases (like a vein that never grew) ... but in a lot, it can. Please ask Dr. Sclafani

re #4: Again, I guess all these people liberated and getting these results are just nuts.

Keep confusing anyone looking for new information ... everyone who has been here for more than a few months sees right through your stale arguments. :lol:


Zamboni, Doepp, Scalfani. Yes everyone knows they are on the CCSVI express. Now it is time to convince the other 99% of the medical community CCSVI actually exists. I think it is great your wife's doctor discovered her CCSVI although since it has not be proven beyond a reasonable doubt CCSVI actually exists that claim may be a bit presumptuous. As everyone knows the dilemma facing Zamboni and others is proving that a "different venous system"(webs,strings, tangles,etc) actually create problems for people or are they just a part of the "diversity" of the human anatomy . Results from clinical trials hopefully to be announced soon....
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Postby concerned » Sun Dec 05, 2010 9:42 am

CCSVIhusband wrote:

re #2: Your study that you debated (Doepp I believe) linked CCSVI to MS ... so #2 has been proven.




For someone who has spent months reading about CCSVI, you sure have a hard time getting your facts straight. The Doepp study did nothing of the sort.
Are you thinking Beirut? Lebanon is a long ways away.

http://onlinelibrary.wiley.com/doi/10.1 ... 5/abstract

You seem to have trouble with the concept of "proof".
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Postby bluesky63 » Sun Dec 05, 2010 10:28 am

Sometimes I have trouble keeping straight who said things onscreen, but someone in this thread suggested that Mark W was getting things backward by suggesting that there should be no treatment till a cause for the syndrome was understood.

Many times I have thought that CCSVI reminded me of Wolff-Parkinson-White syndrome, which I was diagnosed with in 2000 and received radiofrequency catheter ablation treatment for (not that different from the liberation procedure).

Many of the things people have said to suggest that CCSVI could not exist could also be said about WPW:

* Many "normal" people have the defect but can remain asymptomatic for years; no one knows what triggers symptoms. An individual's experience can vary from no symptoms to mild symptoms to being completely incapacitated and having it be potentially life-threatening.

* It is considered a congenital defect, with a higher likelihood if a family member has it, but the actual cause is not known.

* Some people have it but it doesn't show up on conventional tests. A person might not know they had it till they started having symptoms (worst case scenario, till discovered at autopsy).

* Some people need more than one ablation for successful treatment.

And on and on . . .

Not very many years ago, electrophysiologists started using radiofrequency ablation to address WPW syndrome. If they waited till they thoroughly understood WPW syndrome before using ablation to treat it, there'd be a lot more dead people out there.

I myself had two ablations, two years apart. The difference between the procedures was HUGE because of the learning and advances that had taken place in those two years. But they still don't know the cause.

At any rate, there is so much we don't know about every area of medicine, but it is so exciting to be in the middle of anything that could help in this devastating disease. We're here because someone we care about is affected by multiple sclerosis.

I think my previous experience with WPW makes me view it in a different light and makes me view many of the objections differently. And it certainly makes me think that we don't necessarily need to understand the myriad causes of a syndrome before we treat it -- I am very glad my cardiologists didn't wait. :-)

What this boils down to is that I am thinking in terms of results before I obsess over cause. Is there a meaningful effect on symptoms? Is there an effect on disability? On progression? That's what makes the difference, more than anything else, to me and my children.

Cause is important, of course, but disability is what we live with.

For the second time in a thread today, I am expressing my excitement that Dr. Sclafani's arrangement will offer real data on exactly this type of information. Whatever the results turn out to be, they will be collected in a database with assessments and surveys.

Data -- I love meaningful data!

:-)
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Postby Lyon » Sun Dec 05, 2010 10:46 am

bluesky63 wrote: Data -- I love meaningful data! :-)
Absolutely. I mentioned a long time ago that, in relation to the vitamin deficiency diseases, which similar to MS were devastating and not understood for hundreds of years, it finally was determined that satisfactory resolution could be had as simply as getting enough of the right vitamins.

To this date I'm not sure that science totally understands or could convincingly explain the damaging mechanisms of some of the vitamin deficiencies but after satisfactory resolution no one really needs or cares about those mechanisms, nor should they.

Important difference though, is that it remains to be proven that chronic cerebral venous insufficiency exists/that it causes the problems which have been attributed to it/that it isn't equally or nearly equally shared among the general public in the developed populations.
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Re: Defining a syndrome

Postby codefellow » Sun Dec 05, 2010 11:21 am

Mark once again you are putting the horse before the cart when you say CCSVI should be treated before understanding the causes of CCSVI.



We do not know what causes MS. Therefore, MS should not be treated?
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Postby CCSVIhusband » Sun Dec 05, 2010 12:43 pm

concerned wrote:
CCSVIhusband wrote:

re #2: Your study that you debated (Doepp I believe) linked CCSVI to MS ... so #2 has been proven.




For someone who has spent months reading about CCSVI, you sure have a hard time getting your facts straight. The Doepp study did nothing of the sort.
Are you thinking Beirut? Lebanon is a long ways away.

http://onlinelibrary.wiley.com/doi/10.1 ... 5/abstract

You seem to have trouble with the concept of "proof".


So you're admitting that the Beirut study (sorry if I got the name wrong ... big whoop in the grand scheme of things) showed a link between CCSVI and MS? THANKS!!!

That was the study I meant ... just confused the name. Oh well ... still got my point across (and you to admit it).
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Re: Defining a syndrome

Postby CCSVIhusband » Sun Dec 05, 2010 12:46 pm

codefellow wrote:
Mark once again you are putting the horse before the cart when you say CCSVI should be treated before understanding the causes of CCSVI.



We do not know what causes MS. Therefore, MS should not be treated?


According to their logic codefellow ... that is correct. I'm sure they'll spin that statement and move the line once again!
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