CCSVI PreCongress Meeting- September 7, 2009

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

Postby Jamie » Tue Sep 08, 2009 8:01 am

Not read this yet or the reviews

Going to get myself a cup of coffee and enjoy it!
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Postby mrhodes40 » Tue Sep 08, 2009 8:08 am

He will give proof tomorrow that there is plasticity and remyelination in the CNS and the Liberation procedure have proven to activate remyelination in the CNS as shown by MRI.

“Yes!!!” stated Dr. Salvi...”no one is lost!!” (editorial comment....his face lit up as he spoke these words.)



There are no words for this. :D :D :D how absolutely wonderful. I

I hope you get a little more on the aspect regarding the blood flow.

he wants to articulate again that flow is more important than stenosis- especially as a preliminary diagnostic tool.
This is one reason that Dr Dake needs a successful sonographer to do his dopplers. He can't test the DCV -deep cerebral veins-- right now and does not have confirmation that people have turbulence free flow in that area. For example, I know he left some stenosis on one side on me, might there still be some turbulent flow? I am not anxious for a revision and I hope that the fact my collaterals disappeared means that by and large my circulation is good and I'll be OK, but these details will not all be clarified for a while.

But you know what? I do not even care at least they are on it!! At least I know where to look for answers.

There is no mention of ongoing immune suppression in any of these preview presentations, it will be interesting to see if anyone has an opinion that such is needed.

I still take copaxone, reasoning that it stops MS in EAE so if there was some accidental autoimmune feature to my MS, that may end it as it does in mice. Really now that the brain is not getting whacked all the time so that new damage is constantly stimulating new immune activation, that may be a great approach if it were needed...........
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Boreas » Tue Sep 08, 2009 8:16 am

IHateMS wrote:thanks for the info. any news organizations there?


no, not exactly, guys from the swiss/kiwi/german/french/italian ccsvi-forum have posted here before. one interesting thing is that there will be (a rather short) presentation of Zamboni et al.'s finding at the annual ECTRISM-meeting in Duesseldorf on Sept. 10. ECTRISM is the "European Committee for the Treatment and Research in Multiple Sclerosis", the largest body of research on MS in Europe. It is in general pretty industry related (and -sponsored) but at least they are not totally denying ccsvi.

<shortened url>
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Postby Jamie » Tue Sep 08, 2009 8:53 am

This is going to be absolutely HUGE when this does take off.

MS is such a high profile disease.
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Postby bestadmom » Tue Sep 08, 2009 9:07 am

After reading your other post last night I just couldn't sleep. I feel that this is IT! I just know it in my gut. It is beyond exciting, it's earth-shattering.
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Postby MaggieMae » Tue Sep 08, 2009 9:11 am

Says it is a "poster topic". What exactly does that mean. No presentation, just written material?
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Postby TvG » Tue Sep 08, 2009 9:18 am

A quote from the published research

In all these patients also cognitive and motor activities – assessed by means of an outcome measure called MSFC - are significantly and persistently improved while the same is not true for patients with the progressive forms of the disease. In the latter, however, progression was stopped and the patients’ quality of life improved.


Mixed feeling about this, seems to be less optimistic for progressive MS?
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Postby Arcee » Tue Sep 08, 2009 9:31 am

WOW. Did someone already say that? :D

Will be walking around with a big grin for a good long while.

Joan, thanks so much for the updates. From your fingers to many, many eyes and ears. Can't wait for the next posting.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Loobie » Tue Sep 08, 2009 9:33 am

mrhodes40 wrote:I hope you get a little more on the aspect regarding the blood flow.

he wants to articulate again that flow is more important than stenosis- especially as a preliminary diagnostic tool.
This is one reason that Dr Dake needs a successful sonographer to do his dopplers. He can't test the DCV -deep cerebral veins-- right now and does not have confirmation that people have turbulence free flow in that area. For example, I know he left some stenosis on one side on me, might there still be some turbulent flow? I am not anxious for a revision and I hope that the fact my collaterals disappeared means that by and large my circulation is good and I'll be OK, but these details will not all be clarified for a while.
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Postby Jamie » Tue Sep 08, 2009 9:36 am

SP and PP people will want more than this of course but can everyone please remember what a huge deal it would be to even STOP progression?

Mel was diagnosed 2 years ago last week and there was absolutely nothing even on the horizon that claimed that even for RR. Slow many for RR but short of monthly chemo what's been useful at all for SP/PP? Absolutely nothing.

the best was a mylelin basic protein analog that helped some 60% of patients, I believe this claim for SP/PP was quietly dropped.
MBP 8000 or something like that.

If this indeed could stop progression that is amazing and opens the possibilty of repair later on as those technologies (stem cell?) mature.

Even more reason if you are early stage MS to get this checked out before permanent damage is done.
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Postby Loobie » Tue Sep 08, 2009 9:41 am

Loobie wrote:
mrhodes40 wrote:I hope you get a little more on the aspect regarding the blood flow.

he wants to articulate again that flow is more important than stenosis- especially as a preliminary diagnostic tool.
This is one reason that Dr Dake needs a successful sonographer to do his dopplers. He can't test the DCV -deep cerebral veins-- right now and does not have confirmation that people have turbulence free flow in that area. For example, I know he left some stenosis on one side on me, might there still be some turbulent flow? I am not anxious for a revision and I hope that the fact my collaterals disappeared means that by and large my circulation is good and I'll be OK, but these details will not all be clarified for a while.
marie


OK, and now for what I was going to write!! This is the huge thing for me. Being one of the ones that hasn't seemed to respond to this, it makes me yearn for that type of test. Anyone up for a trip to Italy? I'm going to cover this big time with Dake next week. I really want to spend some time discussing why we aren't doing these tests and see what we CAN do in regards to measuring flow. I feel that the stents placed in me have done nothing to date but put my shoulder out of joint. I got a glimpse, but that feels gone now, because I'm sure the one side the stents were put on had some better flow, but if people are seeing results and I'm not then I have to try and question why. My hope is that what he may have learned he can apply to me. To date, I've had a couple of really, really good days that I don't feel I'd have been capable of before, but something is still going on for sure. Don't know what and don't feel like I'm relapsing (knock on wood), but whatever helped for those few days went bye bye.
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Postby Boreas » Tue Sep 08, 2009 12:00 pm

MaggieMae wrote:Says it is a "poster topic". What exactly does that mean. No presentation, just written material?


As far as I can see this means that different approaches & researches are summarized under a certain topic, here "disease modifying therapy - general". There's 13 papers to be presented under a common flag, which means that everyone has about 7 minutes to detail their findings. Anyway - it's a start. CCSVI has been totally neglected by the medicine-establishment in Germany until now. An "expert" on one of the leading industry-sponsored ms-forums dismissed it as beeing fairly ungrounded & exotic. Industry resistance will of course continue to pose a major obstacle for treatment according to Zamboni, Dake & Schelling.
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Postby Sharon » Tue Sep 08, 2009 8:08 pm

Cheer wrote
Dr. Dake then stated that he had also tested a relative of a confirmed MS patient. A woman who had not been diagnosed with MS, but who presented at Stanford with jugular occlusion and a variety of neurological deficits, yet no official MS diagnosis. She also showed lesion activity on an MRI, and he stented he occlusion the day before he flew to Bologna.


Hey all - Dr. D. is talking about my daughter. I will catch up later - I am off to China

Sharon
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Postby Boreas » Wed Sep 09, 2009 3:11 am

Here is some more information on Zamboni at ECTRIMS:

<shortened url>
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Postby catfreak » Wed Sep 09, 2009 7:52 am

Sharon,

Dr Dake was telling my huband and me about your daughter when he came in to release me on Friday. No names of course.

I told my son, who has headaches like me, that he needs to get an MRI and just make sure there are no lesions. It scares me.

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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