Cheer's excellent adventure

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

Postby Loobie » Mon Sep 07, 2009 5:38 pm

Keep it coming Joan!! Is this like Twitter? :lol: :lol:
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Postby mrhodes40 » Mon Sep 07, 2009 6:19 pm

Fernando is correct. The public information is that they are doing a 1000 person study, that is known. They made a point of asking those who participated in the doppler study to keep mum on it so there are fewer people talking about it than the usual study. I know someone who was there though and heard a rumor that it was going very, very well. I would never have mentioned it on the pubic forum though because it is privileged, but since Dr Guttman said it to Cheer.....

Cheer's comment about the 100% concordance between the JNI and the Zamboni work means that Zamboni's work is confirmed.

Just to be clear we are talking about reflux and dopplers.

treatment is a story in development.
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Postby patientx » Mon Sep 07, 2009 6:25 pm

fernando wrote:Patientx,

I think there is a person in this forum who participated in that study. And I believe that Dr. Bianca Weinstock Guttman has something to do with that.


And....
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Postby CureOrBust » Mon Sep 07, 2009 6:39 pm

cheerleader wrote:We will be 150 in attendance tomorrow.
does anyone know where a role of attendance is kept? I wish to check if there is anyone from Aus I could contact when they get back.
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Postby mrhodes40 » Mon Sep 07, 2009 6:40 pm

Fernando said
Quote:
""All those he studied had occluded jugulars and 90% of those children have MS 20 years later. ""


This is something I was thinking about the other day.

They are going to find people with stenosis WITHOUT MS. People in the process of getting that who is fine, symptom wise, right now


Fernando, I agree with that. There has to be some people who have stenosis and do not yet have clinically definite MS.

I find this fact of the Sardinia children to be the real earth shaker in Cheers brief synopsis of what was happening in Bologna tonight. This is at the MINIMUM highly suggestive that this is causative.

I mean I do not know what else you could do to show it; take healthy kids and give them stenosis and see if they develop MS?? This is essentially what happened. in 20 years. TWENTY.

This also confirms what we have been discussing: it takes many years for this to develop so when people have their jugulars removed for cancer or trauma, they probably will not develop MS in their lifetime unless they are very young, and if that happens they'd be considered "unlucky", not that the trauma or jug operation has anything to do with the MS.
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
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Postby patientx » Mon Sep 07, 2009 6:42 pm

mrhodes40 wrote:Fernando is correct. The public information is that they are doing a 1000 person study, that is known. They made a point of asking those who participated in the doppler study to keep mum on it so there are fewer people talking about it than the usual study.


Where has this been made public? If I look at the website for JNI or the Buffalo Neuroimaging Analysis Center I see no mention of this imaging study, nor the number of volunteers they have studied so far. In fact, the only place I have heard about this study is at this website. I have inquired into a number of MS studies, and I am participating in a clinical trial, and I have never had such problems getting information on a study .


I know someone who was there though and heard a rumor that it was going very, very well. I would never have mentioned it on the pubic forum though because it is privileged, but since Dr Guttman said it to Cheer.....


Rumor? Never mentioned it on a public forum? And this is supposed to be a done deal?

I think all who have MS should be hopeful about Zamboni's work. But let's wait until the proceedings from this symposium and/or Jacbos publishes its results before making grand pronouncements.
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Postby bestadmom » Mon Sep 07, 2009 6:48 pm

This is truly amazing!! I'm so happy to hear the news, especially that JNI has 100% concurrence. When I made my appt 2 months ago for JNI they had already tested 250 people. My guess is they are at 350+. I go next Tues 9/15, and my first stop s a meeting with Dr. Weinstock Guttman.

What's even more exciting is they they will begin to treat the stenosis, so us East-coasters will have treatment on our side of the country!

I can't wait to hear the news being reported to the general public. I'm disappointed that my press connections didn't step up to the plate. They'll be kicking themselves soon enough.

Dr. Cheer, thank you for being our leader and emissary. We all owe so much to you.
Last edited by bestadmom on Mon Sep 07, 2009 8:05 pm, edited 2 times in total.
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Postby Terry » Mon Sep 07, 2009 7:58 pm

in the 80's and studied congenital venous malformation in children. All those he studied had occluded jugulars and 90% of those children have MS 20 years later. We can wait around another 20 years....or not.


I'm wondering where the kids came from. I mean, did they have some symptoms that led them to Zamboni? Or led him to them? Did he check lots of children and then follow the ones with jug issues? I'm wondering what was the purpose of that study? Was he curious about jugs and MS way back then?
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Postby mrhodes40 » Mon Sep 07, 2009 8:43 pm

Terry,
the kids had venous malformations--a problem with the veins and they were being investigated for that issue. My guess is that the jug issue was uncovered incidentally while they were doing the other work.

What is interesting about that in the wider sense is that jugular occlusion is generally considered to be benign, for example they think if you have cancer in the neck they can take them out and your vertebral veins will just take the load no problem.... thus all those years ago with the kids Dr Z saw it is not likely the jug issue itself was thought to be a specific problem for the kids but more likely just noted as part of their overall venous issue.

I knew from a private letter Dr Zamboni had been leading up to this work for 22 years, this explains what he was doing so long ago and how amazing that it all came together this way... how fortunate that the guy who did all that work on kids years ago was the person to discover the stenosis in MS and to put it all together. How amazing he was able to say to himself "hey I wonder about those kids with those malformations of the venous system did they get MS all these years later?" Can you imagine how shocked he must have been to see that 90% of them did have it?

that must have been a shocking moment. 8O

It boggles my mind to think about it.

pretty cool though!! 8)
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
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Postby mrhodes40 » Mon Sep 07, 2009 8:47 pm

bestadmom
I'm disappointed that my press connections didn't step up to the plate. They'll be kicking themselves soon enough.


oh won't they just be so sorry about that? :wink:

I am very sorry there is not a news story coming out tomorrow for us on nightly news or Nancy Schneiderman or something.
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 Rokkit » Mon Sep 07, 2009 9:26 pm

I think all who have MS should be hopeful about Zamboni's work. But let's wait until the proceedings from this symposium and/or Jacbos publishes its results before making grand pronouncements.


It is true obviously that Cheer's short post shouldn't be taken as the last word on the symposium. OTOH, Cheer is nobody's fool, and she is also very well aware of who her audience is here, so I don't think there's a chance in heck she throws this out there...

Jacobs is showing a 100% correlation with Zamboni's findings, and is planning on training other centers to diagnose and treat CCSVi. Oh, yeah.


...unless the information she was given was very persuasive. If Cheer is persuaded, I am persuaded. Oh, yeah.

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Postby CureOrBust » Tue Sep 08, 2009 3:07 am

mrhodes40 wrote:I mean I do not know what else you could do to show it; take healthy kids and give them stenosis and see if they develop MS??
MMMMIIIIIICCCCCEEEE! :o

Have you learnt nothing in the past 10 years, those little critters are obviously lining up to get EAE....
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Postby Arcee » Tue Sep 08, 2009 5:54 am

CureOrBust wrote:
mrhodes40 wrote:I mean I do not know what else you could do to show it; take healthy kids and give them stenosis and see if they develop MS??
MMMMIIIIIICCCCCEEEE! :o

Have you learnt nothing in the past 10 years, those little critters are obviously lining up to get EAE....


Oh that one is the laugh of the day!
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 mrhodes40 » Tue Sep 08, 2009 7:01 am

LOL....... :lol:
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 cheerleader » Tue Sep 08, 2009 8:25 am

It's done....I'm exhausted. But amazed. Right hand may never write again (only kidding) It was incredible to have all those great minds in one room...and you could tell, folks were floored by what was being presented. I was not invited to the press conference, so I cannot tell you who was in attendance, but I was given a complete press packet and I'll type it up with my 40 pages of notes later.....

I just wanted to say how much I appreciate Dr. Paolo Zamboni, as a man and a doctor. I don't know how much to tell, because I want to respect his privacy as an individual, but suffice it to say, this man understands suffering. His wife has MS and his body is affected by some sort of palsy...he has trouble walking. His mission is one of healing, and he has been lining up his research and publishing papers one by one every year or so, to make the case for CCSVI. He has reached out to neurologists and vascular docs and imaging designers and technicians, because he realizes that cooperation is key. He has very little ego in all of this, and is gratified to see research coming in from all different areas.

It was also a pleasure meeting Dr. Marian Simka- a true gentleman and a scholar. He was fresh from a visit in Monaco, and it was wonderful to spend time with him and get to know him. Dr. F.A. Schelling is a gentle intellectual giant, a brilliant man with the courage of his convictions. He still has many questions about CCSVI, and does not think the current model answers all of his observations, but he is hopeful future research will delve deeper into the mystery of venous reflux. The Ferrera team was so kind and fun and open to a crazy wife from California...I felt embraced by this community, even though much of the research (especially the DNA research) flew above my head.

I will try my best to make sense of the notes. The entire symposium was recorded, and I assume copies will be made available in the future. Much of it we already know here at TIMS, like the Zamboni papers and the endovascular research...and I was disappointed that there were no journal papers handed out. There will be publications in the coming months...this was a preliminary "what's to come." There were many questions and some differing opinions, but all was handled with respect....I just want to say that the doctors I saw today are much better behaved at questioning than some folks online here....they understand the nuance of "tone". It is possible to question people without being nasty or deriding them...and yes, debate is very important, but so is respect. I was impressed by that today. Even when people had completely different opinions (venous stenting was one such topic)...everyone spoke with respect.

I was not able to get a list of who was in attendance at the symposium- but I will try to secure that. There is a concordance of all the doctors looking at CCSVI..they are all finding it in all MS patients. 100%. I know this is a sticking point for many here...and some docs brought it up too. But it's a fact. Dr. Zamboni encouraged others to go home and test their MS patients, to find out for themselves. His doppler protocol has been taught to the doctors at Jacobs, and will be shared internationally.

So...I'm going to get to work. Might go out to dinner with Dr. D...we'll see. I sure learned alot today, and I feel even more strongly that MS patients and their loved ones need to bang on doors, rattle the cages, and wake up the neurological community. Status quo is no longer acceptable. No one will say "This is IT." But everyone said "This is extremely important, and we cannot not ignore it."

Some neurologists may see this as a threat to their MS practice- but I saw some really smart, confidant neuros look at it as a challenge they want to take on and understand. And that gave me great hope.
to be continued....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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