Cheer's excellent adventure

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

Postby Jamie » Sun Sep 06, 2009 11:24 pm

Wow!!

Look at that list of people!
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Postby gibbledygook » Mon Sep 07, 2009 3:21 am

Wow! Dr Cheer! This is amazing. Every time I log into ThisisMS I am overwhelmed by the CCSVI site which has EXPLODED! And now you are in Bologna. I'd love to be there too. How fascinating. I hope you hear or meet Dr Claude Franscheschi who responded to my accentless French email which I thought very kind. Enjoy. Holly would be very excited.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Mon Sep 07, 2009 1:55 pm

Amazing preliminary session...got to meet all the presenting and some attending docs (about 25 tonight), dear Dr. Zamboni, Schelling, Simka and Dr. Dake in attendance. I was the only civilian. There was a review of materials to be presented tomorrow, which is really exciting. Jacobs is showing a 100% correlation with Zamboni's findings, and is planning on training other centers to diagnose and treat CCSVi. Oh, yeah.

The biggest surprise was meeting neuros that are interested in this paradigm. We will be 150 in attendance tomorrow. I had a lovely dinner and wine, so I'm going to call it a night. I have 8 pages of notes (taken before wine) to transcribe...relating the history of Dr. Z's journey into exploring the vascular connection, as well as presentations by other doctors in attendance. I will transcribe in totality on the plane home- barring any unforeseen Norwegian incidents. One tidbit....Dr. Z worked in Sardinia, Italy (high MS prevalence) 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.

Lots to tell, but I am whipped and want to be rested for tomorrow. This is an amazing opportunity, and I cannot wait to share with you all in entirety.

a domani,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Mon Sep 07, 2009 2:16 pm

Thanks for the update Cheer! Wow so you met all the main players in CCSVI:) 8 pages!! you are thorough x
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Postby fernando » Mon Sep 07, 2009 2:41 pm

There was a review of materials to be presented tomorrow, which is really exciting. Jacobs is showing a 100% correlation with Zamboni's findings,


WOWWWWWWWWW
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Postby Arcee » Mon Sep 07, 2009 2:44 pm

Cheer, how exciting! Sometimes it just all seems so incredible. So glad you are there and reporting back, and glad you took the time to enjoy Bologna. Waiting enthusiastically for your transcription :D
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 » Mon Sep 07, 2009 3:12 pm

Jacobs 100%


Considering the size of that cohort, this is a done deal.

This was always, from the December paper, fantastically robust research. the 100% concordance from the beginning was the clue that they had found something pathognomic--in other words unique to MS. In contrast to people insisting that 100% was "suspicious" it was the key to the fact the research was BETTER than anything else we've been offered.

The fact that an American institution is also finding 100% concordance in a 1000 person cohort should give anyone with a skeptical point of view comfort. This is not going away and it is not a debate on hypothesis, it is a newly uncovered physical anomaly which can be proven in MS patients that others do not have.

One tidbit....Dr. Z worked in Sardinia, Italy (high MS prevalence) 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.


What is so interesting about that is that the Sardinian population has been studied for decades because of their high MS incidence; their genes, their everything. If kids with this anomaly get MS years later as adults then this is the cause....because they didn't have MS when they were kids.

Wobbly told me that they had data on kids....

Someone could argue that perhaps the gene that causes MS also causes stenosis and they are unrelated but that would be a nonsense argument--fantastically unlikely.

What wonderful wonderful news............. :D :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 javaneen » Mon Sep 07, 2009 3:32 pm

Dr. Z worked in Sardinia, Italy (high MS prevalence) 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.


WOW! WOW! WOW! WOW! :!: :!: :!: :!:

Keep it coming Cheer!
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Postby catfreak » Mon Sep 07, 2009 3:41 pm

WOO HOO!!!! :D :D :D :D :D :D :D :D :D :D :D :D :D

Awesome news!!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

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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Postby CureIous » Mon Sep 07, 2009 3:46 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:57 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby skydog » Mon Sep 07, 2009 4:30 pm

Wow! seems to say it best. You are Awesome Dr. Cheer You earned that title in my book. Nothing will stand in our way now. Give the bikers and skeptics the high D... Peace and Health to All, Mark
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Postby Jamie » Mon Sep 07, 2009 4:31 pm

That's just the long term evidence that helps fill the picture.

As I've said all my reasonable doubts went a while ago, and the new woman sitting next to me is proof enough of that!

I can't wait to read the full report Cheer!!

Again explains clusters of MS, congenital either genetic or tetragenic.

Keep the good news rolling!
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Postby patientx » Mon Sep 07, 2009 4:33 pm

mrhodes40 wrote:
Jacobs 100%


Considering the size of that cohort, this is a done deal.

This was always, from the December paper, fantastically robust research. the 100% concordance from the beginning was the clue that they had found something pathognomic--in other words unique to MS. In contrast to people insisting that 100% was "suspicious" it was the key to the fact the research was BETTER than anything else we've been offered.

The fact that an American institution is also finding 100% concordance in a 1000 person cohort should give anyone with a skeptical point of view comfort. This is not going away and it is not a debate on hypothesis, it is a newly uncovered physical anomaly which can be proven in MS patients that others do not have.


With all due respect, you are putting the cart way in front of the horse, unless you have information on the Jacobs study that you would like to share.

When I called the imaging center in Buffalo, I couldn't even get them to admit an imaging study on CCSVI was ongoing. So how do you know they have tested 1000 people already? And what exactly is 100% agreement with Zamboni's studies? Based on anecdotal reports from people going to Stanford, even Dr. Dake doesn't see or agree with the pattern seen by Zamboni.

I really hope that JNI has found results that support CCSVI as the cause of MS. And I hope they present this at the Bologna conference. But, to say at this point, this is a done deal is really stretching things.
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Postby fernando » Mon Sep 07, 2009 5:12 pm

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.
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Postby fernando » Mon Sep 07, 2009 5:14 pm

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.
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