Latest Wheelchair Kamikaze Post on CCSVI

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

Postby dunkempt » Fri Oct 29, 2010 8:05 pm

This would tend to indicate that some unknown disease process is producing both the vascular and the neurologic abnormalities found in these patients.


Maybe. But when Simka reported similar data (abstract also from ECTRIMS 2010) showing that severity of CCSVI was not correlated with either duration of disease or age, Simka said what that suggested was 1) CCSVI is likely congenital:

Importantly, venous lesions in differently aged patients were comparable, and severity of venous lesions did not correlate with duration of MS. This finding favors the idea of congenital nature of those vascular malformations


and 2) that CCSVI may be not just associated but have a causitive role in MS:

These findings indicate that most likely both pathologies are interconnected and CCSVI may play a role in the pathogenesis and progression of MS.


-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby malden » Sat Oct 30, 2010 3:02 am

TMrox wrote:...
Here some interesting comments from Dr Zivadinov:

"Featured Masters Questions and Answers
Robert Zivadinov, MD, PhD
June 2010

The basic theory behind chronic cerebro-spinal vascular insuffiency (CCSVI) is that blood is not properly draining from the brain and spinal cord. CCSVI can include several different types of venous anomalies, including constrictions external to the vein and intraluminal anomalies. The internal jugular and azygous veins are among those involved.

Vascular abnormalities in patients with MS are not a new concept—they were first identified in the 1800s and have been described since the 1930s. Nor are venous insufficiencies specific to MS. Our studies have found CCSVI in about 25% of normal individuals and about 40% of those with neurologic diseases. It could be that an abnormality of the blood vessels triggers an immune response leading to the inflammation and myelin degradation seen in MS, possibly related to deposits of iron in the brain.

http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=994227&id=14320
From the Italian press---Professor Rohit Bakshi of Harvard University came to Ferrara University to discuss how his decade long study of iron deposition in MS brains has now intertwined with Dr. Zamboni's research:
...
its conclusions have been come to intertwine with the results of tests carried out by the researcher and neurologist Bologna Ferrara Fabrizio Salvi on Ccsvi, which have established a hypothetical link between stenosis of the venous vessels in the brain iron accumulation and the onset of multiple sclerosis .
...

Iron in Chronic Brain Disorders: Imaging and Neurotherapeutic Implications (... Rohit Bakshi)
"http://www.neurotherapeutics.org/article/S1933-7213(07)00090-6/abstract"
...However, the link between observed iron deposition and pathological processes underlying various diseases of the brain is not well understood.


So neither Zivadinov nor Bakshi nor Zamboni (Salvi) couldn't find a missing LINK for connecting CCSVI to MS. They try hard, but it's still unknown. Their hypothesis are still hypothetical: it could be, possibly related, supposed, highly conjectural, not well understood, not well supported by available evidence. Far, far away from thesis.
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Correlation does not imply causality

Postby ScutFarkus » Sat Oct 30, 2010 10:51 am

1eye wrote:
TMrox wrote:...
My view at this point is that CCSVI is associated with MS; however it is yet to be determined whether CCSVI is among the risk factors that, along with others, increase a person’s susceptibility to developing this disease. The fact that CCSVI prevalence is about 38% in patients with a first clinical attack of MS and almost 90% in those with secondary progressive MS and a disease history of 20 years suggests to me that venous insufficiency has a high likelihood of affecting people with MS over time.

Info taken from:
http://www.mastersofms.com/masters_qas.php


This is a piece of news to me. This means, that, with my history being almost exactly the one he describes, *I* have about a 90% chance of having CCSVI. So why would *I* think twice about wanting venoplasty? That's good enough for me, and should be good enough for the most entrenched neurologist, the MS Society, the government, and all the IRs you can shake a stick at.


You seem to be missing the key point of the text you quote, as well as many prior comments in this thread: while there is evidence that CCSVI is more common in people with MS, there is very little evidence to support the idea that CCSVI causes MS. In fact, recent results argue against that theory. For example, the text you quote indicates that CCSVI gets worse after your first MS symptoms, suggesting it's either a result of MS, or a result of some other process that is causing both MS and CCSVI. And if CCSVI doesn't have a causative role in MS, then fixing CCSVI is unlikely to help your MS.

This lack of evidence that CCSVI causes MS, or that fixing CCSVI helps MS, is why "the most entrenched neurologist, the MS Society, the government, and all the IRs you can shake a stick at" are urging caution.

As to your question of "why would *I* think twice about wanting venoplasty?", the answer is that venoplasty has known risks but unknown benefits. So you gotta ask yourself, do you feel lucky? Personally, I think everyone should think twice (or maybe even three times!) before having a surgical procedure.

/Scut
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Postby sbr487 » Sat Oct 30, 2010 11:31 am

One still cannot rule out the possibility that venous insufficiency itself is not a one time constant phenomenon and undergoes continuous degradation over a period. And with it the disease severity also increases.

No one can dismiss observable reflux as being benign just like that ...

So it is going to be almost impossible to say whether CCSVI causes MS or is caused by it and it might take any number of years to come to a conclusion.

Now the thing that really matters

1) whether symptoms that MS patients suffer from are helped by fixing CCSVI. nd more importantly
2) whether lesions reduce due to the treatment
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby concerned » Sat Oct 30, 2010 11:33 am

sbr487 wrote:One still cannot rule out the possibility that venous insufficiency itself is not a one time constant phenomenon and undergoes continuous degradation over a period. And with it the disease severity also increases.


So it's not a congenital malformation then?

PS- also, dialysis patients who undergo jugular stenting have MS?
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Postby sbr487 » Sat Oct 30, 2010 11:41 am

concerned wrote:PS- also, dialysis patients who undergo jugular stenting have MS?


So, you are saying that these patients show blood refluxing back to the brain. Can you point me to any literature I can take a look at?
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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Re: Correlation does not imply causality

Postby 1eye » Sat Oct 30, 2010 11:41 am

ScutFarkus wrote:=
You seem to be missing the key point of the text you quote, as well as many prior comments in this thread: while there is evidence that CCSVI is more common in people with MS, there is very little evidence to support the idea that CCSVI causes MS. In fact, recent results argue against that theory. For example, the text you quote indicates that CCSVI gets worse after your first MS symptoms, suggesting it's either a result of MS, or a result of some other process that is causing both MS and CCSVI. And if CCSVI doesn't have a causative role in MS, then fixing CCSVI is unlikely to help your MS.

This lack of evidence that CCSVI causes MS, or that fixing CCSVI helps MS, is why "the most entrenched neurologist, the MS Society, the government, and all the IRs you can shake a stick at" are urging caution.

As to your question of "why would *I* think twice about wanting venoplasty?", the answer is that venoplasty has known risks but unknown benefits. So you gotta ask yourself, do you feel lucky? Personally, I think everyone should think twice (or maybe even three times!) before having a surgical procedure.

/Scut


I think it is clear to most people with half a brain that its benefits are well known to maybe three or four thousand people, and the risks are well-known to be minimal and manageable. Yes, I feel very lucky to have had an IR who admitted privately that it's just a guess. A rather good one, I think. Of course, I am a fool, so there is no hope for me. I am doomed to scrambling after every snake oil that comes around. Sometimes, I even feel lucky when I use Google. And sometimes, even when old Clint Eastwood movies are on TV. Plus, venoplasty is not a surgical procedure. Spinal irrigation. Now *there* was a surgical procedure. Yup, I feel lucky. You can pull the trigger now.

If CCSVI gets worse after your first MS symptoms, that in no way precludes it from having caused it. Many conditions are asymptomatic a long time before causing anything you would ask a doctor about. Like for instance tricuspid regurgitation, which is very prevalent and asymptomatic, and causes reflux which will commonly enter the brain through the jugulars, and cause worsening neurological symptoms.

No, the point I had from that quote was that there is 90% prevalence of CCSVI in 'MS', in people who are secondary progressive and have had 'MS' for 20 years. That's me, jack. And treating it *has* helped my symptoms. Where will you get odds like that? Not in any casino I've been in.

"I'm an American, and I don't have to see something to know it's stupid." - Tom Smothers
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby concerned » Sat Oct 30, 2010 11:42 am

sbr487 wrote:
concerned wrote:PS- also, dialysis patients who undergo jugular stenting have MS?


So, you are saying that these patients show blood refluxing back to the brain. Can you point me to any literature I can take a look at?


If stenosis/thrombosis isn't causing the "reflux", then what is? and why does ballooning the "stenosis" help if it's not the cause of "reflux".
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Postby sbr487 » Sat Oct 30, 2010 12:41 pm

Marc,

while the beirut study seems to confirm the existence of CCSVI, I am still confused with the conclusions it draws. It suggests that MS causes CCSVI. While that might look logical given the data they got but how can one explain MS causing venous abnormalities like inverted values, fused leaflets etc? I remember one study (unable to clearly recall right now) where stenosis % itself was very low but other abnormalities were in majority and satisfied Dr. Z's primary qualifier - reflux. I am sure some of these things would have crossed your mind. What are your thoughts?

Here's wishing you a good health!
Last edited by sbr487 on Sat Oct 30, 2010 12:45 pm, edited 1 time in total.
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Postby malden » Sat Oct 30, 2010 12:43 pm

concerned wrote:
sbr487 wrote:
concerned wrote:PS- also, dialysis patients who undergo jugular stenting have MS?


So, you are saying that these patients show blood refluxing back to the brain. Can you point me to any literature I can take a look at?


If stenosis/thrombosis isn't causing the "reflux", then what is? and why does ballooning the "stenosis" help if it's not the cause of "reflux".


"Reflux in the brain" is a Bogeyman of CCSVI theory, monstrous imaginary figure used in threatening MS-patients. This legendary monster has no specific appearance, no evidence of existing, non explainable by any hemodynamic theory. He simply has no set appearance, but is just an amorphous embodiment of terror. Just endless repeating .... If you are naughty, the bogeyman will get you and eat your brain!
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Postby NZer1 » Sat Oct 30, 2010 12:48 pm

I am of the view that until a set of patients, with and without MS is used to evaluate the methods used by Dr. Zamboni and the methods of the deniers we will continue to argue. Dr. Zivadinov's testing outcomes are a case in point. If Dr. Zamboni had access to those same patients would we be arguing now?
Most of the vascular drainage problems are congenital, some like Marcs are from other causes and real. Using words like blockage tends to have one believe that they are more of a temporary nature, something that deniers thrive on.
There are many other aspects of Veinous Drainage and associated flows such as CSF flow that have influence in the CCSVI collective problem. There are the Iron deposition incidence as well.
Until the testing methods have been improved and standardized there will be disputes caused by the Published Articles that are in the arena at present. We are hoping to make conclusions from very scant and often poor or unrelated information.
The amount of anecdotal outcome information does point to a relationship and most importantly Quality of life Improvement.
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Postby NZer1 » Sat Oct 30, 2010 12:54 pm

Marc its good to hear your are better. Its interesting to hear about your choices of treatment and the situation your health has been in, whether it is because of those choices one wonders?
There is much to be learnt from following the articles that have been written by Dr. Flanagan and Dr. Kroontz one example is Dr. Flanagans latest blog piece. For those who have not been following, have a look at his blog and on the right side of the column there are other articles listed. Dr Flanagan is to meet Dr. Haacke in the next fortnight to discussion this.
Enjoy.
Cervical Subluxations and CCSVI
uprightdoctor | October 30, 2010 at 6:49 pm | Categories: Uncategorized | URL: http://wp.me/p11lYi-BZ



In a previous post I discussed the role of the vertebral veins, also knowns as the vertebral venous plexus (VVP), in causing chronic craniocervical venous back pressure (CCVBP) and subsequent neurodegenerative conditions and diseases such as multiple sclerosis. Like CCSVI, CCVBP can lead to chronic venous backups and edema in the brain. It can also affect cerebrospinal fluid (CSF) pressure gradients and subsequent flow and volume. Correct CSF volume is essential to brain cushioning, protection and support. Consequently, in addition to MS, CCVBP may play a role in normal pressure hydrocephalus (NPH), which has been associated with Parkinson's and Alzheimer's disease.


verterbral arteries
I next discussed the vertebral-basilar arterial supply to the brain and its likely role in chronic ischemia which, like chronic edema from backed-up veins, is one of the main suspects in demyelination and other neurodegenerative conditions and subsequent diseases. Lastly, I posted pictures of the tight neurovascular tunnels the VVP and vertebral-basilar arteries must pass through in the upper cervical spine and foramen magnum in the base of the skull on its way to the motherboard of the brain, the brainstem.



In light of the above, the picture below on the right is of Greek techno music producer, CostumeNational of fightforccsvi.com. The picture was taken with his permission from Dr. Scalfani's MS website forum called, ThisIsMS.com.

The forum is a wonderful group of MS patients who have provided me with a rare opportunity and unbelievable insight into the mystery of MS that they openly and gladly share. Weakened by their condition, they are nonetheless strong and quite fiery in spirit. Together they have formed a formidable group that is shaking up scientists and researchers around the world. Their determined efforts are helping lead the way and shape future research not only for solving MS, but other devastating neurodegenerative conditions as well such as Alzheimer's and Parkinson's disease, NPH, Huntington's chorea, ALS, PLS and others to numerous to mention here. It is invaluable to say the least to have so many cases to study and follow in one location. They provide a wealth of information that demands further retrospective analysis and investigation such as I in the process of doing now on a much larger scale.

This particular type of picture is called an open mouth odontoid image because

the odontoid process of the second cervical vertebra, called axis or C2, is in the center of the image. It's called the odontoid process because it looks like a tooth that sticks straight up from the body of the vertebra.

The odontoid process fits neatly into a notch in its mate directly above called Atlas or C1 beneath the base of the skull. The odontoid process permits greater pivotal action in the upper cervical spine. In my opinion, the odontoid process also reduces the size of the body of the vertebra, which may help to reduce pressure in the area during head and neck movement. The red line indicates the center line of the spine. The triangular dart-like shapes pointing upward are the spinous process of the cervical vertebra. In a normal spine, they should all line up on the red line.

If you look through the open mouth you will see one of the darts is way off to one side. You will note by the marker on the film that it indicates the right side. That particular dart is the spinous process of the second cervical vertebra (C2) called axis. The degree of misalignment in this case is severe.

According to CostumeNational, about eight years ago or so, he was riding a motorcycle when he crashed into a car, which threw him to the ground landing on the right side of his shoulder and head. The force of the fall from the weight of his propelled body magnified by the speed he was traveling at severely snapped his neck to the left and left him unconscious.

As the x-ray evidence clearly shows, when he came to later in the hospital, although no one knew it at the time, his head and neck were no longer aligned properly. Instead it remained in the wicked tilt to the left the same as it was after impact. Eight years later he started to develop optic neuritis in his left eye on the low side of the head tilt. Head tilts cause the brain, blood and CSF inside the cranial vault to shift to the low side just like water in a glass, which can increase pressure on the optic nerve and may play a role in optic neuritis.

Interestingly, he had no lesions in the brain but he did show hyperintensity signal precisely at the location of the kink in the upper cervical spine. The highly suspicious characteristic symptom of optic neuritis was next followed by cerebral, as well as cord signs and symptoms identical to MS. Nonetheless, without brain lesions, his case falls into the uncertain category of cracks, a no-man's land not considered to be classic MS, which is crazy.

There is a major principle in neurology when it comes to the brain and the cranial vault, called the Monroe-Kellie principle. According to the Monroe-Kellie principle there are essentially three elements inside the cranial vault which include the brain, blood and CSF. Since the cranial vault is a closed container for the most part, if the volume of one of the elements increases, then one or both of the other two elements must decrease in volume. A brain tumor for example can compress blood vessels as can Chiari malformations mentioned in previous posts. Likewise an increase in blood or CSF volume can compress the brain.

The same principle holds true for the spine and spinal canal, which, like the cranial vault, is for the most part a closed container. In other words, there is no free space inside the spinal canal. Instead, the space between the inside walls of the spinal canal and the cord is filled with the VVP. Therefore a kink in the upper cervical spinal canal as in the case above puts a kink in the drainage system of the brain and cord. It also causes venous back pressure and hypertension around the cord. Lastly, it increases resistance to CSF flow on its way back to the brain from the cord.

In my next post I will discuss precision line analysis used by upper cervical chiropractors to analyze mechanical strains such as the one above. After that we will then look at some of the common signs and symptoms of MS which share a lot in common with AD and PD.
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Postby NZer1 » Sat Oct 30, 2010 1:04 pm

I think there is another point that is opening minds to the breadth of CCSVI, the statement from Dr. Haacke in his interview with Dr Hubbard where he talks about the likelihood of 50 or more subsets of CCSVI types of restrictions, something that will challenge deniers and supporters?
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Postby fogdweller » Sat Oct 30, 2010 1:10 pm

marcstck wrote:Angioplasty, and venoplasty for that matter, are both very safe if they do not involve stenting, which I did state in my post. My intention was not to scare anybody off of having the procedure done, but to point out that having it done six or 12 months from now might give them a better chance at seeing long-lasting success.


I second that. I found a place that was performing the procedure fairly close to home, and went ahead and had it done. Partly impatient about the pace of studies and the fact that, for various reasons I was comfidient I would not qualify to participate in any (which would have been my preference.)

If I had it to do over, I would probably wait a year or so. Things are moving faster than they were.

In my case, no harm done, but I suspect I have restenosis and am havinging trouble getting follow-up. The interventionalists at Pacific Interventionalists do not think that restenosis is something they are likely to see, and others don't want to see me for follow up since I have already been treated by someone else.
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Postby Cece » Sat Oct 30, 2010 1:45 pm

fogdweller wrote:The interventionalists at Pacific Interventionalists do not think that restenosis is something they are likely to see

If Zamboni had 50% restenosis, how could it not be likely? Also with the newer more aggressive methods that what Zamboni used and the deviance from the suggested anticoagulants by Zamboni (not antiplatelet like Plavix), I believe it raises the risk of clotting.

To me this is a red flag against Pacific Interventionalists.

Fogdweller, are they willing to see you, they just don't think it's likely to be restenosis? Or are they not willing to see you?

This isn't even Canada, which (sorry Canadians) is something of a third world when it comes to CCSVI. This is the US and people are still falling through the cracks?
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