This Is MS Multiple Sclerosis Knowledge & Support Community

Sharon,
You are correct. I do not have the presuption of being able to discuss the etiology of MS because I lack knowledge and expertise. It is a fact that a great positive correlation between MS and defective venous drainage of the blood from the brain has been demonstrated by Zamboni's group and cofirmed by the early experience by Dr. Dake in Stanford.

Thank you
GiCi

GiCi - please continue to post regarding your experiences and views. I think your posts relating to Prof Zamboni's work are extremely helpful and are of tremendous assistance to others. It is fantastic that you have shown health improvements following CCSVI intervention after being burdened with MS for such an extensive period of time.

Personally, I believe this site indulges Lyon far too much. He clearly has too much time on his hands and not the same level of commitment to a here and now, MS potential solution as others of us.

Phil

Brainteaser,
Thank you for your support. I have met the Director of the MS society of Northern Ireland today and given her the papers published by Zamboni's group together with the brochure of the meeting in Bologna. Would you believe that she never heard of the endovascular treatment of CCSVI? Do you appreciate what we up against? Not only apathy but pure ignorance.
I am pretty confident that this state of affairs will change soon but, in the mean time, my heart goes to the thousands of MS sufferers who are denied a potentially effective and low risk treatment at present.
I will post a summary of the Bologna's meeting on my return.
Take care,
GiCi

HI Gici, Thanks for the post. We are facing the same problems in the UK.
I am really trying to find vascular dr's to get on board here as well as hassling my poor neuro. Dr Z is sending out some invites to the dr's I have spoken to...fingers crossed they go to Bologna.

Let's all hope that Joan connects with someone in the media bigger than a local paper; I know she was working on that. That's the deal. I don't think, and I of course could be wrong, that this information will be suppressed, but I do think that it won't be just plastered on every telephone pole either. When reading the research section in the latest NMSS or maybe MSF magazine there were all kinds of drugs, but this would be where that would go, so maybe GiCi has made a connection that will at least put it out there are "this is also current research". It will get there eventually if enough people benefit from it. Hell, as soon as I (fingers crossed please) start feeling any better, try and keep me off Oprah .

Gici,

Many thanks for your story.

I appreciate the fact that you spend the time to update us and I look forward to your Bologna debrief.

It is encouraging to have someone with your training spreading the word.

Jamie

Loobie wrote:... as soon as I (fingers crossed please) start feeling any better, try and keep me off Oprah .

just don't go jumping up on da couch, we now know the damage that can cause.

I'm extracting (not directly quoting) questions from a post from a few days ago:

radeck wrote:
I was under the impression that RRMS and PPMS have quite similar presentations, i.e. it is hard to tell within the first months or even year whether a patient has RRMS or PPMS based on symptoms and MRI alone, but that there are only subtle differences (PPMS patients e.g. have higher chance of having walking problems initially, RRMS patients higher chance of having optic neuritis, PPMS patients may have more subtle MRI presentation and less inflammatory lesions). However how does this fit into the CCDVI paradigm? If RRMS were caused by the jugular veins being stenosed and PPMS by the azygos veins, wouldn't we expect clearly different symptomatic in the two patient groups? Also, why is the form caused by stenosed jugular vein relapsing-remittent, and the one caused by stenosed azygos progressive?

Thanks for discussing...

Does anybody have thoughts on these? Thanks...

Dr. Zamboni reported a correlation with stenosis in the azygos vein related to patients who were primary progressive (unremitting MS) All PPMS patients had azygos involvement BUT not all the patients w/azygos stenosis were PPMS. His findings saw more jugular stenosis related to RRMS and SPMS. Why this finding? Zamboni posits that lesions on the spinal column which contribute to motor dysfunction correlate to this stenosis pattern in PPMS. But there are exceptions to his findings coming from Dr. Dake.

To be honest, I think we're going to learn that every MS patient has a different, unique form of stenosis. Marc (who some docs think is PPMS) had his CT scan read by Dr. Dake who found jugular stenosis, but radiologists said his azygos was clear. More than that, we may learn that some stenosis is congenital, some acquired from an injury or exacerbated by bacteria or virus. The only common factor seems to be the fact that the veins draining the brain and spine are narrowed, causing reflux and chaotic bloodflow.

still the early days....
cheer

Cheer said

But there are exceptions to his findings coming from Dr. Dake.

Yes there are and the Russian paper the wonderful Dr Simka translated for us also documents a different pattern as well, similar to Dr Dake's. Much will be clarified in the coming months and years.

Just as a note the small bits we have gotten from Dr SImka suggest something unique is being noticed by him that others have not reported on yet either, namely the "may-thurner-like-stenosis" pattern he sees on doppler in his office. This learning and skill is being developed all over the world and each person brings something special in terms of skills and background to the table, the result is going to be the best possible model as these people share what they know.

It is way to early to expect there to be a place to get hard and fast answers yet about this or to try to pin it down or do "but I thought they said...." kinds of comments. This is changing almost weekly and it will probably continue to do so as it goes along.

It has been years since endarterectomy (an operation on the carotid to remove stenosis) has been supplemented by the stent option.

They are STILL arguing in the literature if it is better to do one procedure over the other...as it if is still totally up in the air. 10 years later.

SO I kind of expect people to settle into separate "camps" maybe the stents for everything camp and the endovascular balloon/repairs camp and maybe even a "do a regular open surgery" camp for the tight jugulars such as those that I had which were squished flat by my neck muscles.

It may be some years before a clearly superior approach is known and identified.

I think we should bear in mind that the 4 types of MS are in themselves difficult to diagnose.

right on Jamie

Jamie said

I think we should bear in mind that the 4 types of MS are in themselves difficult to diagnose.

They are difficult to diagnose which makes me wonder if there are more than four types of MS. Now that the venous issue has come into play, will there be an MS caused by trauma to the veins, or MS which is congenital? Lots of questions to be answered.

mrhodes40 wrote:... gotten from Dr SImka suggest something unique is being noticed by him that others have not reported on yet either, namely the "may-thurner-like-stenosis" pattern he sees on doppler in his office.

Marie, I don't specifically remember the "may-thurner-like-stenosis", could you please give a poor student behind in his readings a pointer?

I fit into 3 different types of MS:
1. Benign (as I am still walking after 14 years)
2. Progressive as my numbness has never come in relapses just got progressively worse and never resolved. (My MRI has never shown enhancement)
3. RR as I am now experiencing real relapses that resolve

I think these categories are made up for the neuros and drug companies and don't reflect anything.
I think the CCSVI idea of where the stenosis are makes more sense.