Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby zap » Tue Apr 21, 2009 2:21 pm

I've been following this thread with interest for sometime now, but it wasn't until today that I remembered that when I was first diagnosed and doing a flurry of research, I found a paper I found interesting in that it explained the "dawson's fingers" and other elements that never made much sense to me.

Dug through my old bookmarks and found it labeled "venous pressure theory" - the paper seems to have been taken offline now, but it's still accessible via the wayback machine:

http://web.archive.org/web/20070302141047/http://www.multiple-sclerosis-abc.org/evo/msmanu/839.htm
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Postby zap » Tue Apr 21, 2009 2:29 pm

PS - apologies if this has been posted in here already, can delete this post if it has been: http://www3.interscience.wiley.com/cgi-bin/fulltext/119454590/PDFSTART - kind of a nonmedical perspective but interesting regardless ...

A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease in structural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of observation, and the points from which observation takes place, differ. It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated.
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Postby cheerleader » Tue Apr 21, 2009 3:16 pm

Hey Zap...
Welcome to the party! The second paper is new to this board and VERY interesting. Thanks for that! It's from the 1980's and explains the vascular connection and why it was overlooked by neurologists and researchers for the autoimmune model. Highly recommended reading.
Here it is again, folks....
Social constructionism and medical sociology: a study of the vascular theory of multiple sclerosis


The first paper's been referenced on this thread, but no worries. It's the work of the grandfather of CCSVI, Dr. F.A. Schelling. He noticed upon autopsy that the veins of MS patients were distended and swollen as they exited the cerebellum. This was way back in the 70's- he was writing about the venous connection to Dawson's Fingers lesions. I stumbled on his writings while I was researching the venous connection, and Sharon (from this site) e-mailed me his paper.

I've since e-mailed Dr. Schelling, and he has visited Dr. Zamboni in Ferrera, saw doppler evidence of his theories, and is very excited by all of the current research. He and Dr. Zamboni are good friends, and are of like-mind in this paradigm-shifting approach to MS. Not alot of pharma research into this angle...since there's no drug to be put on for life if all you have to do is remove stenosis from the jugular and azygos veins. We'll see where this all leads...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Wed Apr 22, 2009 4:36 am

I am so hopeful that something may come of this it's not even funny. There just seems to be people who have peeked into this, but like you say, there's no life long profit model.
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Postby mrhodes40 » Wed Apr 22, 2009 8:28 am

Zap the second paper ought to be required reading; it is that good a paper. it details the concept of cognitive dissonance well and it also mentions a "social" angle to the bias an individual doctor / medical commuinty has, namely that if you are a neuro, you assess everything in terms of YOUR model and nothing else is given a fair hearing because your training, understandings and beliefs are so well accepted by you as the only way that you CAN'T hear any other ideas. The article points out the aspect of power for the neuro community and their supposed "right" to veto any other models or ideas even though they have little background to assess it fairly and a social drive to reject it even if they did understand it. I really liked the article.

Lew I too have hope for this and for me the biggest thing is that it is different. I like that part of it especially well :lol:

But that having been said when I got dopplers done and had reflux, I can't tell you what that was like, sitting there in the dark room with a dim blue glow from the doppler screen eerily lighting the sonographers face half believing we'd see nothing, to hear him say with surprise "There IS reflux here; it's in the vertebral vein." My next thought was 'now what?'

A year is a long time to wait from Dr Z to finish his study and say how or if it worked to take out the stenoses.

But my mind keeps coming back to this: it can't be good to have the veins refluxing blood back toward the brain. I mean if you are doing some venous study somewhere else in the body and see reflux, it gets fixed. Why would the brain be any different and it is somehow "benign" to have it happen there?

Here's a veous ulcer caused by problems in the saphenous (leg) vein
http://www.youtube.com/watch?v=1N68W5I0xgA

Here's the site that talks about that doctor treating legs to relieve such problems
http://www.veinsveinsveins.com/venous_reflux.html

Dr Zamboni discusses similarities between venous ulcer and MS lesions in his "06 presentation "The Big Idea..." When you consider that both these lesions have the same cytokine profile...

Perivenous inflammation
erythrocyte extra-vasation
Haemosiderin deposits
Adhesion molecules and white cells activation
Macrophage migration-infiltration
T cell migration-infiltration
Iron laden-macrophage
MMPs hyper-activation
TIMPs hypo-expression
Local iron overload
Urine haemosiderin test
data
HFE mutation
Fibrin cuff (on going reparative process)

(From Zamboni '06 the big idea)

...you wonder why anyone would not understand the need for thorough investigation of this idea--

I've said before the neuro looks at this data and says "Autoimmune" the vascular person says "No, it is like venous ulcer". Different backgrounds, different bias, different understanding, same data.

Dang, a year is a long time! :roll:
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Postby zap » Wed Apr 22, 2009 8:45 am

mrhodes40 wrote:Zap the second paper ought to be required reading; it is that good a paper. it details the concept of cognitive dissonance well and it also mentions a "social" angle to the bias an individual doctor / medical commuinty has, namely that if you are a neuro, you assess everything in terms of YOUR model and nothing else is given a fair hearing because your training, understandings and beliefs are so well accepted by you as the only way that you CAN'T hear any other ideas. The article points out the aspect of power for the neuro community and their supposed "right" to veto any other models or ideas even though they have little background to assess it fairly and a social drive to reject it even if they did understand it. I really liked the article.


I liked it too, but there should be another paper out there somewhere that digs more into the bias introduced by the role of the pharma companies -

I mean, the amount of $ to be made by them for basically lifetime prescriptions to these drugs is incredible, and you'd have to be a fool to not realize that there will be correspondingly incredible pressures brought to bear, in efforts to make those potential profits actual ...
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Postby mrhodes40 » Wed Apr 22, 2009 11:08 am

loobie said
"there's no lifelong profit model"


zap said
I liked it too, but there should be another paper out there somewhere that digs more into the bias introduced by the role of the pharma companies


Here's the good thing: a stenosis is visible on venogram. If any one individal has it, they have it. In a way, the only studies that matter are the follow up studies on the patients treated to remove their stenosis. If those are positive, then we have a good reason to treat any stenosis we might be able to see even if:

someone does a study and says they only see reflux half the time
someone does a study and says they have 2 abnormals on healthy people
someone does a study and they say these stenoses are very small and not significant
someone does a study and says few MSers have 2 abnormals, most have one and lots of healthy people do too.
expert neuro's write opinion papers saying this is impossible. :lol:

None of it will matter. Once there is proof that removing a stenosis results in reduced symptoms or stabilisation or whatever, assuming that is the case here, then any other studies/speculation will be moot. All we have to do then is get the venograms and see IF we have a stenosis ourselves. Once you see one does any of that other stuff matter?

We are really lucky this has already passed to the phase where patients are already in trial having been treated with stenosis removl.

We are also lucky they treated 100 people and removed their stenoses. If they had done 20 it would be really easy for the neuros to say that it was insignificant and meaningless and more studies needed, but 100 people with PROVEN stenosis or even stenoses is already a significant finding.

I mean think about it, all of those people had a significant blockage, significant enough to treat.

If you take the Dec '08 Zamboni paper, ALL of the MSers have stenosis on venogram. All of them.

Add to that this liberation study and know that of course all 100 of those people had them too; even if they used the same people from the other study and treated them all, they still had to get another 35 people to treat to get the numbers to 100.

If they used all new people it cold even be true that the 65 MSers from the Dec paper who had venograms and thus proven stenoses, PLUS the 100 people from the liberation study who obviously had them COULD mean that 165 MSers are now proven to have actual, visible-on-venogram stenosis.

All we have to do now is wait for the results of the liberation study to remove the stenosis and see if lesions reduce or whatever.

On the cool side: Jacobs neurological institute has a 3 tesla MRI so the pictures they get from the 4 American people they treated who are being followed there will provide some especially good data regarding how the lesion areas are impacted by the liberation procedure.

here's a link to a 3 tesla page...
http://www.eradimaging.com/site/article ... 26&mode=ce
if you read down note how they say they can do angiography with the MRI--venogams may get a LOT easier.[/b]
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Postby peekaboo » Wed Apr 22, 2009 12:41 pm

I am another follower of this thread and have high hopes...I've been wondering what is causing the reflux which is the utlimate problem. I found this article called Ultrasonographic Evaluation of Vertebral
Venous Valves...valves that can malfunction like in the heart!!!! here is the links. I appologize up front if this was linked previously...I don't remember so but then i have ms and my memeory is not reliable :?

www.ajnr.org/cgi/reprint/23/8/1418.pdf
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Postby mrhodes40 » Wed Apr 22, 2009 1:25 pm

Wow PKBoo! I am sooo glad you thought to include that paper. I think it is important enough to includeon the other thread for research related to this subject so I'll add it to that too

I liked this
At the same time, the functional or morphologic
incompetence or absence of either the IJV valves or
the vertebral venous valves may be the cause of cough
headache, cerebral morbidity after positive end-expiratory
pressure ventilation, and some types of cerebrovascular
diseases


I have had dopplers done and I had vertebral vein reflux......
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Postby peekaboo » Wed Apr 22, 2009 7:09 pm

Options?


Cranio-sacral therapy is practiced by a plethora of health professionals most commonly physical therapists, massage therapists and chiropractors - who employ a touch equivalent to the weight of a nickel. As a result of this tender technique, many clients claim that they can fall asleep during their CST sessions.

The theory behind cranio-sacral therapy is that when blockages occur in spinal fluid, an unharmonious balance in the body can occur, resulting in muscle and joint strain, emotional disturbances and the improper operation of the bodys organs and central nervous system. Practitioners believe that until the spinal fluid is naturally allowed to move freely around the body, the central nervous system and the bodys other major organs and muscles will be put off balance and put at risk of sickness and injury.

During your cranio-sacral therapy session, you will lie facing upwards on a massage table. You can opt to be fully-clothed or you can wear a gown. The massage therapist will lightly manipulate various areas of your body including your bones, skull, spine, pelvis and soft tissues to clear any blockages of cerebrospinal fluid to allow the fluid to flow more smoothly and naturally.

A cranio-sacral therapy session typically lasts, at minimum, 20 minutes, but a session can last up to an hour, depending on the seriousness of your condition. CST has been known to aid various health problems such as migraine headaches, sinus disorders and immune deficiencies. CST has also been used as a preventative therapy in cases where a clients immune system is very low.

Minor health ailments such as chronic headaches can typically be treated with a few CST sessions. However more serious health conditions that cause severe pain or chronic disease should be conducted over a series of weekly CST sessions.

my new care giver has massage therapy experience,,,

www.massagetherapy101.com/massage-techniques/cra... - 26k - Similar pages

http://www.massagetherapy101.com/massag ... erapy.aspx
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Postby cheerleader » Wed Apr 22, 2009 7:19 pm

CST seems like a fine thing, peekaboo...but moving spinal fluid will not get rid of stenosis and venous reflux in the jugular, azygos or vertebral veins.

We've previously talked about how vasodilators such as exercise, stress reduction, supplements, LDN, etc. can help keep blood flowing...but if Dr. Zamboni has found stenosis and blockage in every MS patient he's tested, the surgical removal and stenting looks like only viable option. As Marie mentioned, Dr. Zamboni is currently stenting 100 MS patients....he must be pretty confident to be performing an invasive procedure.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby AndrewKFletcher » Thu Apr 23, 2009 12:50 am

Marie, you raised some questions and doubts about my research. I have addressed these doubts in a coherent manor and wait patiently for you to reply.

You have accused me of being irresponsible in bringing to everyone’s attention the fact that chronic venous insufficiency can be resolved by simply tilting the bed in the opposite direction to the method used currently by the medical profession and yet some how believe that the chronic venous insufficiency discovered by Franz Schelling CVI in the internal veins highlighted by Professor Zamboni and colleagues
is unrelated to CVI in the legs or any other part of the venous return that becomes swollen.
How do you propose that the venous return network is segregated into disconnected sections rather than it being a continuous network of tubular vessels all related and all connected and therefore all able to share the same reduction in venous pressure.

It is not difficult to understand how increased venous pressure can cause a vein to twist and develop a kink, one only has to look at the more obvious CVI in varicose veins to see that pressure is responsible.

Whether you believe it or not it should not provide you with a reason to pigeon hole this important discovery.

I put it to you that IBT is already helping people on this forum who have decided to try it for themselves. Sooner or later (Based on 2 previous pilot studies) people on this forum will begin to report the same remarkable improvements observed by real people like Terri H, who has joined this forum and so far been reluctant to post about her own experience using IBT for 11 years.

Long before I heard about Franz Schelling and Professor Zamboni, many people with multiple sclerosis (Far too many to be a coincidence) had been reporting considerable improvements from Inclined Bed Therapy, indeed I provided you and others with several reports from people involved in a second pilot study, and an independent report from John and Jean Simkins titled raised bed survey. Found at the bottom of this file in case you have overlooked it. http://www.newmediaexplorer.org/sepp/SCIStudypart1.pdf

The photographs showing improvements in varicose veins on the thread you posted your doubts. http://www.thisisms.com/ftopict-6755.html Prove that chronic venous insufficiency in the legs at least can clearly be addressed without surgery, and you wrote you could think of a number of reasons why this should happen, which I find quite remarkable given that a study set up on a scientific forum frequented by scientists, doctors, surgeons and nurses has failed to provide us with any alternative reason for this vast photographically illustrated improvement from varicose veins.

Whether you or anyone else feels uncomfortable with this novel approach to addressing varicose or swollen veins, or disagree with the reasoning behind it’s obvious success, it is clearly worth investigating and testing by anyone who has multiple sclerosis to see if the many case reports I have to back up my claims are either nothing more than a coincidence or valid observations made by people who have tested this theory for themselves and found great benefit from doing so.

Surgery may not be the only viable option!

Andrew K Fletcher
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Postby gibbledygook » Thu Apr 23, 2009 4:55 am

Hi Andrew!

I admire your persistence.

I think this IBT thing may have a positive effect. I'm certainly feeling better now I'm home after a mini (horsechestnut-induced?)relapse and then tick bite fever in Africa. I have adjusted my bed to 4 firm pillows, 1 soft under the head, 3 firm, 1/2 soft under the shoulders, 2 firm 1/2 soft under the bottom.

I'm not sure I understand how increased pressure would make the veins twist and turn. Surely increased pressure would dilate them or perhaps that is too simple?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby AndrewKFletcher » Thu Apr 23, 2009 5:52 am

You really need to tilt your bed properly in order to experience the full benefits of sleeping inclined. Pillows, while better than sleeping flat still fall far short of a correct inclined sleeping angle.

RE Pressures causing a kink in a vein. Gas pressures in the gut while different from pressure changes in the veins cause a twisted gut in animals, particularly horses, All that is required for a kink to form is for there to be a relatively constant compression pressure on the outside of the vein. Sitting for prolonged periods with poor posture and poor seating can rapidly increase blood pressure due to the compression force on the surrounding tissue against the bones, causing the veins to become constricted. The heart cannot compensate for this and continues to pump increasing the pressure inside the artery and the veins as the pressure backs up against the compression related restrictions. All of this pressure has to go somewhere and would in an unrestricted venous network become dissipated through the venous return. But in this case the pressure would continue to act on the inside of the vein walls causing them to bulge outwards.

Becoming aware of how important correct posture is in maintaining the circulation can be achieved by experimenting with sitting and sleeping posture.

The Alexander Technique and Yoga rely on aligning the body and paying attention to posture. Even these could methods could be improved upon with modest refinement, but nevertheless have been shown to improve the health of people who adopt these methods.

Standing in one position for too long without weight shifting from one foot to another to relieve the constant compression on the underside of the feet can rapidly render a person unconscious, again pressure changes and posture require consideration.

Now picture one side of a vein against a solid part of the body, say the spine for example. Increase the pressure and the inflating vein can only inflate on the side away from the spine next to the softer tissue. This could easily distort and twist the veins causing a kink to form.
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Postby peekaboo » Thu Apr 23, 2009 7:55 am

cheer wrote:

but if Dr. Zamboni has found stenosis and blockage in every MS patient he's tested, the surgical removal and stenting looks like only viable option. As Marie mentioned, Dr. Zamboni is currently stenting 100 MS patients....he must be pretty confident to be performing an invasive procedure.


I agree completely with you cheer. my thoughts about cst and movement of the spinal fluid might assist in the movement of other fluids of the spine. I can't wait until Zamboni can go public w/his findings and his procedures go maintream where all can access this procedure. Myself, I am limited in the resources where I can't go to any doctor of choice, get special tests or treatments etc unless i can sneak into a clinical trial. :cry:
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