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Posted: Fri Apr 17, 2009 9:01 am Post subject: CCSVI RESEARCH here
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 2:35 pm; edited 6 times in total
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.
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
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.
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.
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.
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.
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.
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.
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
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
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.
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!
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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.
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.
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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.
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.
Joined: Mar 22, 2007 Posts: 407 Location: Durango, Co
Posted: Sun May 17, 2009 10:16 am Post subject:
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
Joined: Sep 11, 2007 Posts: 2647 Location: southern California
Posted: Sun May 17, 2009 10:54 am Post subject:
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. _________________ Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS
Last edited by cheerleader on Mon May 18, 2009 8:48 am; edited 1 time in total
Joined: Jul 28, 2005 Posts: 1903 Location: Sydney, Australia
Posted: Mon May 18, 2009 5:38 am Post subject:
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'.
Joined: Jan 06, 2005 Posts: 338 Location: Massachusetts, USA
Posted: Fri May 22, 2009 11:32 am Post subject:
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!
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.
Joined: Jan 06, 2005 Posts: 338 Location: Massachusetts, USA
Posted: Fri May 22, 2009 2:16 pm Post subject:
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.
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 ....
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. _________________ Not offering medical advice, I am just a patient too! Regimen thread
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