CCSVI- just the facts, ma'am

radeck · Post by **radeck** » Fri Sep 04, 2009 8:56 am

Just wondering in what ways congestive venous myelopathy is different from a form MS?

cheerleader · Post by **cheerleader** » Fri Sep 04, 2009 9:19 am

radeck wrote:Just wondering in what ways congestive venous myelopathy is different from a form MS?

It's a differential diagnosis from MS. It is caused by dural arteriovenous fistula (DAVF)

radeck · Post by **radeck** » Tue Sep 08, 2009 7:48 am

I have a question about the characteristic pattern of MS lesions (i.e. Dawson's fingers). Schelling offer a good explanation for this, i.e. why they are located mainly around venous outlets.

This seems to me is a major argument in favor of CCSVI. But is it? When I asked a couple of MS specialist about the locations of lesions in patients they said it made sense because they were close to the blood flow, i.e. the origin of lymphocytes that attack the CNS. However in this case I would expect the lesions to be around capillaries close to the carotid artery "inlets" into the brain, as this would be were the bad T-cells get burned up. My question is, are the arterial inlets different enough in location from the venous outflows that this particular argument for CCSVI can be made? I couldn't find this out from looking at some anatomy pictures on the web, so input would be greatly appreciated. Thank you.

radeck · Post by **radeck** » Tue Sep 08, 2009 7:59 am

Dear All, one more question, this time about the chicken-and-egg issue, i.e. whether CCSVI causes lesions or MS causes lesions as well as CCSVI. I've heard that cerebrospinal blood-flow is bad in the brains of MS patients in general, but I'm gathering form this thread that this might be a fundamentally different form of blood-flow problem owing to jugular and azygos vein stenoses. My question is: is there a section between the stenosed jugular vein and brain where the veins of MS patients look normal?

I believe Dr. Dake believes there is a possibility that some of the stenosis is due to an auto-immune process ensuing after stenosis (that originally might be congenital) has lead to irregular blood-flow. I.e. that there's a positive feedback. But if there's a gap between the most stenosed part of the jugular/azygos and the area where the lesions sit, that would at least argue strongly in favor of the stenosed jugular coming first, the lesions coming after.

Thanks for any insights you might have.

paulmur · Post by **paulmur** » Sat Oct 31, 2009 6:58 pm

I'm very excited about the prospects here. But what about stents and balloons..?
Once these are implanted how much does one have to maintain.. care and worry about them? Just don't know very much about these devices. Balloons remain in all the time? If they collapse they can be replaced? And why would one want one over the other?

Can someone speak about the use of these things?

Appreciate it
Paul

Post by **NHE** » Sat Oct 31, 2009 7:15 pm

paulmur wrote:I'm very excited about the prospects here. But what about stents and balloons..?
Once these are implanted how much does one have to maintain.. care and worry about them? Just don't know very much about these devices. Balloons remain in all the time? If they collapse they can be replaced? And why would one want one over the other?

In balloon angioplasty, the balloons are only temporarily inserted into the vein. They are used to open up the vein and are then removed. Many of Dr. Zamboni's patients needed to be retreated since restenosis occurred over time. The restenosis was also found to be associated with relapse. Dr. Dake is using stents to open up the veins and the stents remain once they are inserted. Dr. Dake tried balloon angioplasty on a couple of the early patients and found that the vein readily collapsed after the balloon was removed. Due to this experience, he became convinced that stents were the way to go for long term efficacy.

NHE

paulmur · Post by **paulmur** » Sun Nov 01, 2009 9:40 am

Oh Ok. So it sounds like stents are a more permanent solution. But do you have to worry about too much excercise, infections.. etc?

cheerleader · Post by **cheerleader** » Sun Nov 01, 2009 3:09 pm

paulmur wrote:Oh Ok. So it sounds like stents are a more permanent solution. But do you have to worry about too much excercise, infections.. etc?

Paul- there have been concerns mentioned regarding stents in the flexible neck area, and also with the location near the jugular foramen and the accessory and vagus nerves. Some people have had problems with the higher stents pressing on these nerves. As far as long term patency for the stents, they do quite well in venous situations like May Thurner. Only time will tell how they do in the jugulars.
cheer

paulmur · Post by **paulmur** » Sun Nov 01, 2009 8:01 pm

And thanks for doing such a great job here.

acol · Post by **acol** » Mon Nov 02, 2009 9:09 am

Cheerleader wrote: Dr. Zamboni tested over 500 MS patients, many who were on immune modulating medication, and they all still had CCSVI.

I have booked an appointment to see my Doctor next week. I want to present an clear precis of CCSVI and it relationship to patients with MS. I think that the above statistic represents quite compelling evidence. I understand from reading previous threads that this statistic is disputed by some posters (I think it was Lyon who queried whether or not all these patients had a positive diagnosis of MS).

I have copied various articles from references provided by various posters including yourself. I am now revisiting these articles but to date I cannot find a clear copy which states that CCSV was found in all MS patients. I would be very grateful if you could help me in this matter.

jean-la-grenouille · Post by **jean-la-grenouille** » Mon Nov 02, 2009 10:52 am

Good evening everybody,

here is a link about CCSVI and MS : ccsvi-ms.net with a translation in FRENCH of the article "CCSVI : just the facts ma'ame".

best regards

Jean

paulmur · Post by **paulmur** » Mon Nov 02, 2009 5:31 pm

I see a lot of people here mentioning tinnitus. I started having it in my left ear about 7 or 8 months ago. I've been ignoring it. I mentioned it to my ms doc and my ENT doc.. they both wrote it off. The ENT said I could come in for some tests if I wanted to.

I had surgery for polyps in my sinuses about 3 or 4 years before I was dx'd with ms. Wonder if that could be related somehow.

Cheers

mrhodes40 · Post by **mrhodes40** » Tue Nov 03, 2009 9:01 am

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.

acol · Post by **acol** » Tue Nov 03, 2009 10:18 am

mrhodes40

Many thanks for this very detailed explanation. I presume that you are referring to the JNNP article which was originally published online on 5 Dec 2008. I will re-read this article, trying to pay more attention to the detail.

Looking forward to the first installment of the Jacobs study.

CNClear · Post by **CNClear** » Tue Nov 03, 2009 10:41 am

yeah, thanks, marie...that put it in perspective for me...

Lisa

This Is MS Multiple Sclerosis Knowledge & Support Community

CCSVI- just the facts, ma'am

Hi. Stents and Balloons Oh My!

Re: Hi. Stents and Balloons Oh My!

Thanks Cheerleader

french translation

Tinnitus