CCSVI RESEARCH here

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

CCSVI RESEARCH here

Postby mrhodes40 » Fri Apr 17, 2009 8:01 am

This thread is to keep track of the research related to the CCSVI -Chronic CerebroSpinal Venous Insufficiency-- in one accessible place. Most all of the blue links in the post below link to FULL CITATIONS. This page is a good reference for physicians.

If you want to print just one paper for your doctor, use the Dec 08 paper with the venograms and add the address of this page so further investigation is possible if desired.

TIMS members are so kind and appreciative, I know you'll be tempted to add "thanks" to thread here, but I think it might be better if we don't do that here? let's talk on the other thread![/b]
Last edited by mrhodes40 on Sat May 02, 2009 1:35 pm, edited 6 times in total.
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Postby mrhodes40 » Fri Apr 17, 2009 8:03 am

Please don't let this be an excuse to not read the thread, it is full of really great discussion and other materials!

NEWS DOCUMENTARY, See Dr Zamboni being interviewed by Avis Favaro as he explains the work. You will see a liberation procedure, see scans showing stenosis, and will hear clear explanations of the whole model including results of surgery. The extended interviews, rather than the edited one that aired, are the best.

W5 DOCUMENTARY NEWS STORY ON DR ZAMBONI AND THE LIBERATION PROCEDURE

Sept '09: The Conference at Bologna Sept 8, 09
This conference was attended by and includes many presentations from the researchers involved in this work including leading American neurologists, vascular specialists and radiologists. TO read the summary notes that includes intriguing information about these different disciplines view this work, please see these threads:
Press Release on conference points
Pre conference Meet and greet dinner notes
Finalized notes from the conference

PROFESSIONAL NOTES FROM THE CONFERENCE:
Dr Weinstock Guttman CCSVI vs doppler correlates
Dr Lee Embryology of Venous Malformations
Dr Ferlini Genetics related to CCSVI

The Zamboni et al Materials

Zamboni presentation 2006 The big idea: iron dependant inflammation in venous disease an proposed parallels in MS
There are a variety of materials in that link related to venous cause of MS, the Zamboni paper is the second one down and it outlines the hypothesis of how MS might be caused by venous insufficiency. This paper starts the journey for the Ferrara team forming the basis for the idea that MS might be related to venous issues and setting the stage for later research to see if that is correct or not. The other materials on that "lab project" paper are worth reading as well.

Zamboni et al 2007 Intracranial venous haemodynamics in MS
This paper is the first doppler studies of 89 MS patients and 60 controls.
In this research they looked at the transverse sinus and the deep middle cerebral veins. The resistance index on the MS patients showed a greatly increased resistance to blood flow in the brain itself. They did not look at the extracranial veins in this work; that comes in later studies. This first study was not blinded, it was to discover how MS patients might be consistently assessed with doppler to evaluate venous drainage. This work resulted in a doppler protocol as described in "Doppler haemodynamics of cerebral venous return", below.

Menegatti, Zamboni, '08 Doppler haemodynamics of cerebral venous return
This paper describes how to do the tests and suggests parameters for normal findings. Copy this page for the sonographer if needed.

Zamboni et al 2009 The value of cerebral doppler haemodynamics in the assessment of ms
Though this paper was published in January of '09 the research was actually done before that of the Dec '08 paper below: it was the second large doppler study.

It used 109 MS patients and 177 controls including people with OND and other vascular diseases, thus giving the opportunity for the controls to have issues that might make them prone to have problems with the venous system. Again, all MS patients had 2 abnormal findings and controls had one or less. Because the controls were people who we might suspect could have issues with venous drainage and it remained true that MSers were the only ones that had 2 or more abnormalities, and because this was a large study, it becomes very likely this is a pathognomic pattern for MS; unique to MSers.

In fact the total number of tests performed on control people showed a very small percentage of failure; 5 tests times 177 people=results 871 normal and only 24 abnormal findings. The test totals on the MSers were 288 normal and 257 abnormal tests. Huge differences in venous function overall with the MS population failing test after test while it was rare for others to have an issue.

Be sure and really look at the chart showing the failures on the tests, you'll see that most all of the control failures were on test 5; if you threw out that test, there were only 2 control failures! And many of the controls were very sick people with severe types of neurological diseases. It is not true that just because you have a severe neuro disease you devleop venous issues.

Zamboni et al Dec 2008 "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis"
'et al' refers to Paolo Zamboni, Roberto Galeotti, Erica Menegatti, Anna M Malagoni, Giovanna Tacconi, Sergio Dall'ara, Ilaria Bartolomei and Fabrizio Salvi. There are 8 researchers offering this work.

By the time they did this research, the team was finally permitted to do venograms in any patient with MS who again showed the 2 abnormals.

All 65 patents did, so all had venograms after the dopplers to assess the actual stenoses. This paper includes picture of the stenoses, twisted veins, etc that were seen on venogram in addition to again showing that 100% concordance with the 2 abnormalities on doppler.

Dopplers are sort of like taking a blood pressure; they are an indirect but noninvasive and safe way to get a hint of blood flow. Venograms are like an x-ray; you insert dye into a vein and watch it with an x ray type machine as it goes through the vein. You directly visualize the vein by this method. The fact that this research has venograms that showed actual stenoses, and that these stenoses showed up in 4 distinct patterns is very, very important. it is direct evidence of an abnormality, not a hypothetical speculation that there "might" be one. There are stenoses in these people. For those individuals it is proven. However it remains to be seen if removing these stenoses results in better MS outcomes ie do they get better.

Simka comment on the Zamboni Dec'08 paper
Dr Simka comments on the work with some very thoughtful observations

The Liberation Procedure:

Preliminary results on the first group of patients treated with endovascular procedures to return cerebral circulation to normal. These are reported at the above link. As you read the paper which is a study guide for attendees of the Charing Cross presentation be sure and note that:
1. Dopplers again showed the 100% concordance as to 2 or more venous abnormalities

2. Reported results are on the RRMS group

3. Relaspes were reduced 4 fold

4. MSFC-Z scale (similar to EDSS), fatigue and quality of life were all improved significantly.

5. Any patient that had a relapse also had restenosis of the blockage.

The paper included clear explanations. It is a well done documentation of success using endovascular procedures to alleviate stenosis for RRMS patients. This is a chapter written for the Cx symposium book by Dr Zamboni to accompany is presentation. After the study is done a paper will be submitted for peer review and publishing.

THE LIBERATION STUDY "A prospective open label study of endovascular treatment in chronic cerebrospinal venous insufficiency"

This link takes you to the final paper with 18 month results on 65 patients treated with the liberation procedure. It includes results reported on 35 RRMS, 20 SPMS, 10 PPMS patients treated.

Zamboni, P, et al. "The severity of chronic cerebrospinal venous insufficiency is related to altered cerebrospinal fluid dynamics" This paper discusses the small cohort followed at JNI after being treated in Italy by Dr Zamboni's team. Their work shows with 3T MRI that the venous issues impair CSF flow.

Venous Collateral Circulation of the Extracranial Cerebrospinal Outflow Routes
This recent work August '09 addresses and explains the presence of collateral circulation and what it means with regards to the MS patient and CCSVI. The nosologic pattern identified and associated with MS results in significant overloading of collateral venous pathways and this is part of the pathology.

This paper is technical with in depth descriptions of normal cerebral venous outfow, as well as the pathological patterns identified in CCSVI.

This paper offers evidence and support for the idea that redirection of venous bloodflow in CCSVI is a pathology that needs to be appreciated as such.

Singh A, Zamboni P; Anomalous venous blood flow and iron deposition in multiple sclerosis

This paper describes how iron is damaging to the brain in CCSVI. There is a very good table showing the similarities between CVI, a known venous problem and CCSVI in the link below. The paper is available for purchase. This is a very good summary of how the immune system is activated in CCSVI.


.............................................
Presentations with slides by Zamboni

Charing Cross 2007 Presentation by Zamboni
Presentation in '07 on the idea that MS might be related to CCSVI.

'09 Charing Cross Interview with Dr Zamboni with comments on his Liberation procedure
The CX symposium presentation is not available to see but the guide/summary provided to attendees is listed above. This is just a small interview.

The Hilarescere Foundation Website
This is Dr Zamboni's website with links to all of his papers, presentations and information. New material is added regularly.

Dr Simka's CCSVI Powerpoint Presentation on CCSVI from Monaco Sept 4 '09
PDF Printable version
This presentation offered both standard PPT and PDF was Given at a vascular conference in Monaco on Sept 4 '09 It is an overview of MS as CCSVI with the informationa vailable at this time. Notice the special reference to ischemic injury and rationale for early treatment.
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Replicating studies

PUBMED link to "Diagnosis and treatment of venous malformations Consensus Document of the International uni0n of Phlebology (IUP)-2009"

This CRITICALLY important paper designates CCSVI as a congenital truncular malformation-a venous problem that is there from birth. It may open the way to a physician being able to treat this and reliably expect compensation from insurance.

Refluxing blood flow in the cerebral and spiral veins a potential agent of the initiation of multiple sclerosis Abstract available for free, paper for a fee. This paper postulates that CCSVI is potentially the initiating event in MS and that surgical correction may be helpful.

Simka, Kostecki "Flow disturbances in internal jugular and vertebral veins in patients with Multiple sclerosis"
This link this paper shows the abstract for Dr Simka's study. The article is available for purchase Dr Simka also tested 3 cases of probable MS who also had the abnormality, though that information was left out of the final paper due to the fact the numbers were too small for significance.

Russian Article Translated by Dr Simka
This is not strictly replication because it was in 1993 before any of these Zamboni studies were done. However, this Russian study documents cerebrospinal venous hypertension related to jugular or brachiocephalic stenoses resulting in hypertension in the vertebral plexus and resulting myelopathy.

Carefully read it is easy to see that this material is important for today's findings and supportive. Dr Simka has generously offered to mail a copy to any physicians who would it in order to see the images. PM mrhodes40 or Cheerleader for referral. Thank you Dr Simka for this generosity of time and resources!
...................................................

Dr Haacke and SWI Materials for Radiologists

Dr Haacke's site explaining how SWI MRI supports CCSVI with a protocol for Radiologists to follow to screen
This important site explains CCSVI to radiologists and offers a protocol to follow for assessment of the MS patient. It also asks radiologists to participate in studies by requesting that they evaluate 10 patients then offer a paper on their results. Dr Haacke makes the plea that radiologists can make the difference in getting treatment out to patients by demonstrating in many different facilities that CCSVI is happening in MS brains.

Obtain Dr Haacke's SWI MRI program for use in a radiology office at this site

(research paper)Susceptibility-Weighted Imaging: Technical Aspects and Clinical Applications, Part 1


(research paper)Susceptibility-Weighted Imaging: Technical Aspects and Clinical Applications part 2

(research paper)Characterizing iron deposition in multiple sclerosis lesions using susceptibility weighted imaging

Pictures of Iron deposits in MS compared to normal brain

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Materials on how to do dopplers for sonographers

These are printable PDF files that you can take to the office.

Menegatti, Zamboni, '08 Doppler Haemodynamics of cerebral venous return

Simka M "The many sonographic faces of the chronic cerebrospinal venous insufficiency: how to perform doppler examination in a multiple sclerosis patient"

...................................................

The Schelling materials

F. Alfons Schelling "Multiple Sclerosis: The Image and its message"
In this book, Dr Schelling presents the theory that MS might be a venous issue. Published in the mid 1980's, this wonderful book is available in toto on line. This very detailed 125 page book answers many questions people might have about how this "could" be the cause of MS, associating known facts to the theory and explaining how they relate. Very well researched scholarly work. Written for MD's, it is not easy for everyone to read, but take your time and you'll be able to get it.

Video clips of the venous abnormalities, pictures etc by Schelling
See dopplers of people with reflux and animated drawings of the problems with blood flow in MS based on this research. I understand that the dopplers come from the Zamboni lab as Dr Schelling is a retired person.
...................................
Other Supportive Abstracts/Papers


Link to several FOREIGN LANGUAGE papers
These are several foreign language papers translated to English by Dr Simka. Apparently this work noting the association of venous insufficiency with paraplegias and myelopathy all over the world is not entirely new, although today's technology gives a much better view of it than they had back then.

Kidd et al "Cortical Lesions in Multiple Sclerosis"

Simka,M "Blood Brain Barrier Compromise with Endothelial Inflammation may Lead to Autoimmune Loss of Myelin during Multiple Sclerosis" This paper in Current Neurovascular Issues by Dr Simka offers support of the Zamboni hypothesis along with the idea that such a pathology could possibly trigger autoimmunity in addition to being directly damaging.


Chih-ping Chung et al Jugular venous reflux
Jugular reflux is often seen in MSers tested by Zamboni.

Simka, Rybak 2008 "Hypothetical molecular mechanisms by which local iron overload facilitates the devel. of venous ulcer and multiple sclerosis
Dr Simka's work supports the model as venous issues allow iron into the lesion area. This paper does not have its own pubmed ID yet so enter the authors nae into the pubmed box when you get it....

Dr. Simka Website

7 tesla MRI:a new vision of microvascular abnormalities in MS
Note that all MS lesions have a venous association. You'll be impressed by the clarity of the pictures offered by a 7 tesla MRI

Raised venous pressure as a factor in mutiple sclerosis you may have to type the title into the box on the pubmed page

Chi-Hsiang Chou et al Ultrasonic Evalution of vertebral venous valves
Vetebral veins are noted as having reflux in pattern D as defined by Dr Zamboni in the Dec '08 paper.

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DIAGNOSTICS SHOWING STENOSIS

Actual video of a Liberation type surgery done by Dr Simka on a polish patient This clearly shows the stenosis, repair and return of good circulation. This patient was treated in Oct '09.

Youtube video showing graphic representation of CCSVI

QUICKTIME VIDEO FILE SHOWING MRV WITH STENOSIS This TIMS member kindly offered to upload her MRV so people can see what it is that we are talking about when we talk of stenosis in the jugular veins. If you look as the figure turns you will note that the jugulars pinch down to nothing at the angle of the jaw. You need a quick time player to see this file.

The same TIMS members as seen in the quicktime file showing stent placement

Thread discussing the mrv's with other images
Last edited by mrhodes40 on Tue Jan 26, 2010 1:34 pm, edited 53 times in total.
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Postby Loobie » Sun Apr 19, 2009 3:47 pm

udawoman
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Postby mrhodes40 » Wed Apr 22, 2009 1:33 pm

The above big post with research papers was updated to include Peek-a-boo's find on vetebral valve refux. Thx PKboo!
Thx Lew!

Is this system going to work well guys?
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Postby mrhodes40 » Sat Apr 25, 2009 11:26 am

added Simka's replication to the main post...........
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Postby mrhodes40 » Wed Apr 29, 2009 2:16 pm

Kostecki and Simka's replicating research included 3 people with probable MS.
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Postby Lars » Sun May 17, 2009 9:16 am

Sorry if this has already been addressed, but beyond Zamboni, Drake, etc, has there been any trials concerning CCVI? And is there any published work from the afore mentioned Doc's showing efficacy?
Thanks,
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Postby cheerleader » Sun May 17, 2009 9:54 am

Lars wrote:Sorry if this has already been addressed, but beyond Zamboni, Drake, etc, has there been any trials concerning CCVI? And is there any published work from the afore mentioned Doc's showing efficacy?
Thanks,
Lars


Hey Lars-
Trials in Italy over last ten years. Ongoing results to be published next month. Ongoing "Liberation procedure" in Italy, over 100 MS patients receiving stents in early 2009- preliminary results to be published in September. Dr. Dake is studying 20 MS patients, results published in the fall/winter '09. He reviewed Dr. Zamboni's unpublished results before undertaking his study at Stanford. Dr. Marian Simka in Poland has tested 6 CDMS and 3 probable MS, who all had CCSVI. His research is pre-publication. He is appealing to the board of ethics now for venography and stenting as needed. They are it. If you can wait...there will be more news on efficacy coming in the months/years ahead. We had hoped to get more docs involved. None yet.
Last edited by cheerleader on Mon May 18, 2009 7:48 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Mon May 18, 2009 4:38 am

cheerleader wrote:We had hoped to get more docs involved. None yet.
I'm sure others will be the same, after Dr Dake has a few more "under his belt" and reporting success, the tides will change. Avalanche if all in line.

I will be VERY interested to hear how the people from here go with Dr Dake. If Marie comes out with something wrong in her vascular system, I will be setting appointments the next day, hell, that day! One of the interesting avenues of her case, is that her symptoms are very different to jeffs'.
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Postby Arcee » Fri May 22, 2009 10:32 am

This sticky is enormously helpful with the basic background information and hypotheses and testing. And I understand that Dr. Zamboni is going to be publishing soon on his Liberation Procedure, and Dr. Dake is gathering data that no doubt will include the stents he gave Jeff and Marie. But is there anything available now that speaks to 1) the types of interventions that are possible and 2) the outcomes that we know about?

My neurologist actually is willing to support Zamboni's ideas and my going to see Dr. Dake and have the MRV. But he, and I to a lesser extent, would like to see some data about the interventions and outcomes. Any thoughts on what can be shared at this point in time? Thanks!
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Postby peekaboo » Fri May 22, 2009 10:46 am

hi Arcee -

the only trials published are the links (blue text titles) above in this thread. Marie kindly summarized them which can tell you which ones to print or puruse.

H.
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Postby Arcee » Fri May 22, 2009 1:16 pm

Right, but as best I can tell none of them speak to the issue of the actual interventions and results of them. They are about research on what sets MS patients apart. If I am missing something, please do let me know.
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Postby peekaboo » Fri May 22, 2009 1:53 pm

no you are not missing anything. I misunderstood... :?


Dr. Dake is in the process of interventions but we are using headaches as the dominant symptom just happens he is using all ms patients. His interventions will be to date stents and blood thinners. Dr Zamboni Liberation Procedure as cheer wrote that the interventions will be stents as well. If you are not in a hurry ....
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Postby mrhodes40 » Sat May 23, 2009 6:21 am

Bummer but NO there is NO data yet on interventions and outcomes.

The Liberation 100 were only treated in January (though Dr Z has treated others before and will be mentioning these people in his upcoming press release) and Dr Dake has treated only 2 people to date, Jeff a couple weeks ago and me 4 days ago. We are ahead of the curve at TIMS discussing t his.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Arcee » Sat May 23, 2009 9:37 am

Well I knew we (esp you Marie) are trailblazers, but I guess it would have been nice to see a a footprint or a bread crumb or something to point to :wink:

Will look forward to Dr. Zamboni's press release...
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