Posted: Tue Nov 03, 2009 4:22 pm
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Thanks, Cah. I translated the German from the site. Alfonso is our friend Dr. Schelling from Austria, and he comments that on Nov. 24 Dr. Zamboni will make the Liberation paper (the results from the 2 year endovascular procedure study) available for free on line. (This will coincide with the unblinding of the first part of the Jacobs study and the CTV documentary.) He does not clarify whether this will be published in the Vascular Journal at the same time, or if Zamboni is allowed to publish it on his Fondazione Hilarescere site pre-publication.cah wrote:It's called "official documentation" and will be published in a journal (don't know which). If I got it right, it's about his interventions. It's about those things which were presented in Bologna. It's said "He tries to make it accessible freely on the internet.". Sorry, I don't have any further info.
This is the link: http://csvi-ms.net/forum/viewtopic.php?f=2&t=180
Hello. I am a 52 yr old female with Multiple Sclerosis dx 2005. On a scan done to test for symptoms of pain in vein in neck, 2 cysts on thyroid came up and a noting of: cardiomegaly and borderline pulmonary vasculature... i have had difficulty in breathing and palpitations prior to this scan. My doctor dismissed the notation and told me it was nothing to worry about. Never brought it back up and that was 3 yrs ago. I still get a fast pulse of 140 resting and palpitations, lightheadedness, pains in legs and side of neck etc etc.... is it possible the cardiomegaly and borderline pulmonary vasculature have something to do with my MS or could it be a symptom of CCSVI.... and if not, is it okay to not follow up with this or can it be dismissed as nothing important? Thank you so much for taking the time to answer this question as I have been comtemplating for quite sometime if I should just let it go and "ignore" this scan result and symptoms... Thank you, MamaGirlmrhodes40 wrote:If you read the research thread and the Zamboni papers, they all discuss having 100% of MSers having an abnormality, in the '07 paper and the Jan '09 paper they were only having permission to do dopplers, so in those papers ALL of the MS patients showed at least 2 abnormlities in doppler readings suggesting a problem with circulation. These "two" abnormals might be a combination of several types of abnormalities, for example someone might have reflux in the DCV's and also b-mode abnormality.....another person might have a jugular CSA issue and b mode . Therefore as you look at the chart that shows the percentage of people who had each abnormality none of them are 100%. As you read the discussion there is where the fact that by looking for 2 or more abnormalities you discover 100% MSers had at least 2 abnormal readings and no controls did.
The really interesting paper is the Dec '08 one, on that paper they did all the dopplers blinded and controlled, and when they unblinded the patient diagnosis, again all of the MSers were the ones with the 2 abnormals.
What made that study robust is that they THEN did venograms and looked directly at the veins to see if there actually were any stenoses causing these refuces or if they were some kind of MS anomaly--ALL the MS patients had an actual bona fide stenosis verified on venogram.
The patients undergoing venogram for heart disease or vascular diseases had NO stenosis in the cerebrospinal venous system.
Since this study was blinded and the 100% was again confirmed, it is a very good study for validating the earlier work where reflux was seen in all MSers, although sceintific proof will not be secure until there is rigorous replication.
The first installment of the Jacobs study will come out soon and my GUESS is that almost all MS diagnosed people will have this but that there will be some people who do not because the people who are permitted are not aggressively screened for CDMS. In other words, possibly not 100% because of misdiagnosed persons in a general pool of people carrying the MS diagnosis, whereas the Zamboni groups were carefully screened for typical classic MS.
But the model is that this stenosis is the cause of MS lesions the same way such stenosis causes lesions of the lower leg. If this is accurate then it is pathognomic, meaning if you have MS you will have stenosis, so all people with real true MS will have it if that really is pathognomic.
THis is still early work, still not proven because other places need to agree this is what is going on in MS.
I was found to have a reflux in my internal jugular valve. Initial doppler of my jugulars AND a "preliminary" MRV have both shown no visible stenosis or such in my jugulars. If I am reading Dr Simka's paper on doppler testing correctly, the issues found in the neck, are actually caused by abnormalities elsewhere in the system; eg Azygos.mrhodes40 wrote:OTOH Is the issue perhaps that your issue is outside the neck, in the azygos and not vislble therefore on neck dopplers? Do your deep cerebral veins reflux? Obviously these things can't be seen on neck dopplers so what you have had at this point is a partial assessment.
I'm not sure you're reading this correctly and didn't get this impression from the paper myself. I was under the impression that if you have jugular reflux you also have a mechanical problem in your jugulars, i.e. your valve may be malfunctioning (which would maybe not be visible on the imaging)? I believe that the internal jugular valve sits just above the entry of the subclavian. But I'm not sure.CureOrBust wrote:If I am reading Dr Simka's paper on doppler testing correctly, the issues found in the neck, are actually caused by abnormalities elsewhere in the system; eg Azygos.
And from dictionary.com2. Reflux in the internal jugular or vertebral veins.
In multiple sclerosis patients reflux, i.e. pathologic, inverted direction of flow actually represents vicarious shunt: reversed direction of flow bypassing an obstacle. Usually refluxes are detected distally from strictures.
dis⋅tal –adjective 1. situated away from the point of origin or attachment, as of a limb or bone; terminal.