CCSVI- just the facts, ma'am

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

Postby mrhodes40 » Tue Nov 03, 2009 5:22 pm

You are welcome :D :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby cah » Wed Nov 04, 2009 3:34 am

Don't know which thread this belongs to, but in the german csvi-ms.net-board is the info that the final/official bologna-report, containing Dr. Zambonis results so far, is schedulded for November the 24.

Dr. Zamboni tries to publish this openly.

Haven't found this info here yet.
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Postby Arcee » Wed Nov 04, 2009 7:31 am

Thanks, Cah. When you say 'tries to publish this openly' and 'November 24th' does that mean he is releasing the data himself or will it be published in a journal? You may not know, but since it is a question that we will be asked when we share it, I figured I'd see what we could find out now. Thanks.
diagnosed RR in spring '04
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Postby cah » Wed Nov 04, 2009 8:25 am

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
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Postby cheerleader » Wed Nov 04, 2009 9:24 am

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

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.
Thanks to Cah and Fatima for helping us get Alfonso's updates-
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Postby Arcee » Wed Nov 04, 2009 9:28 am

Yes, thank you very much Cah! (And thanks to Google translate too :D )

And thanks, Joan, for reminding us of Alfonso. Perhaps he could clarify the location of publication??
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ccsvi & ms... cardiomegaly/borderline pulmonary vasculat

Postby MamaGirl » Sat Nov 14, 2009 11:45 pm

mrhodes40 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.


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, MamaGirl
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Postby cheerleader » Sun Nov 15, 2009 10:35 am

Hi Mama-
Saw your post on the Facebook page. This is the place to come to discuss issues with other MS patients and caregivers...we have more space here. Facebook is really just about announcements-

I'm not a doctor...but I'd think that you'd want a cardiologist like Dr. Dake/Dr. Cooke and the folks at Stanford to look at you. An enlarged heart and vasculature issues could certainly be connected to your MS within the CCSVI paradigm. Dr. Zamboni also writes about how the thyroid veins are affected in his new paper on collateral circulation in MS patients. Maybe bring the CCSVI research to your local university medical school, see if their interested in studying you-

Sadly, neurologists look at the brain to the exclusion of the rest of the body....but it is all connected! The veins that drain the brain and get the blood back to the heart have a huge responsibility...and if deoxygenated blood isn't getting back to the heart in a timely matter, the brain is affected. Maybe Marie will chime in, but if not, I'd recommend having your venous system in your neck/head scanned. Best of luck to you-
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Fred1208 » Sun Nov 15, 2009 12:57 pm

So...

I am french and was dx RRMS in 1998, and since 2008 SPMS.

I discovered recently CCSVI and was very interested in.
I had a neck doppler, done by a french doctor involved in CCSVI research, and.. Nothing, everything is OK regarding my veins.
This docctor even suspected in my case SEP desease reality, because he didn't see any issue with the Doppler !!

So today there are different options

1 I don't have any MS, and all the neurologists I met were wrong.
On the other hand, I didn't imagine the relapses I had during the last years and now my increased difficulties to walk..

2 I have got a real MS, and the CCSVI was not detected because :

a In my case additionnal tests are needed, such as MRV, SWI..I don't know.

b Despite first Zamboni's research, CCSVI don't concern 100% of MS patients.

So, if you have got any opinion about what I could do now, it would be helpful :)
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Postby mrhodes40 » Sun Nov 15, 2009 1:06 pm

This kind of issue is difficult because the final answer is not known here.

Are the doppler skills so specialized that no one even interested people can do it unless they've been directly trained by Zamboni as what to look for? It looks like that may be true. I know one of the thing Jacobs and Zamboni are both talking about is training others to do this kind of doppler work.

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 assesment.

at this point this is new so no one knows but the day will come when it is all very clear exactl,y what is needed to have a diagnostic test that is definitive and certain.

I would never assume someone did not have MS because their doppler was negative, that is just way too soon to talk like that about this work.
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 Fred1208 » Mon Nov 16, 2009 2:04 am

Thank you very much for your answer.

I thought also to the azygos..
But you're right, it is probably too early.
But I am not very patient :)

Have a nice day,

Fred
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Postby CureOrBust » Mon Nov 16, 2009 4:37 am

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 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.

I am not a medically trained professional by any standard, but all of Zamboni's tests appear to be based around the head and neck, in the hope to identify possibly issues local to the neck or in another part of the system.

I would GUESS that it is your first guess Maire, and its in the technique. Training for the doppler tests to be repeatable is a major "stenosis" to this theory being repeatable and thereby accepted.
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Postby radeck » Mon Nov 16, 2009 9:05 am

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.


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.
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Postby CureOrBust » Tue Nov 17, 2009 1:45 am

This is the bit I was remembering
2. 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.
And from dictionary.com
dis⋅tal –adjective 1. situated away from the point of origin or attachment, as of a limb or bone; terminal.
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Leanne had this problem

Postby Dovechick » Wed Nov 18, 2009 4:35 am

Bonjour Fred,
Leanne, (LR1234) had this problem with tests done in the UK by non trained people. She says that they could not see anything wrong with her tests, but she sent them to Dr Dake who found stenoses in three places.
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