Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby wobbly » Thu Apr 09, 2009 9:46 am

all u guys --this is very very big --halt some progression at the very least--maybe more--STAY STRONG ALL :lol: :lol:
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Postby mrhodes40 » Fri Apr 10, 2009 2:21 pm

Hey Wobbly thanks for posting an encouraging word! Glad to hear you are doing well so far! It sounds good.

FYI Zamboni said it will be a year long study on the people treated with the Liberation procedure, I had thought the people treated were treated in October but it was actually later than that that they did the endovascular surgeries, like January, so the results reporting how that worked for those 100 people will be wrapping up this Christmas or so.
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good

Postby wobbly » Fri Apr 10, 2009 8:16 pm

best day in a long time / helped clean rugs/ worked out/ went shopping w- dawn 4 easter / hobbling wobbling - legs hurt like he11/ but all in all good / # 24 ty on monday so who the he11 nows/ STAY STRONG ALL :o :o :o :o
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Postby sou » Sat Apr 11, 2009 2:32 am

Hi.

The city where I live is very close to Ferrara. It is 30 hours to Venice by ship and less than 1 hour Venice-Padova-Ferrara by car. The 30 hours in ship are not that many, since travelling with ship is not tiring at all.

I contacted Dr Zamboni and asked if I could undergo the Liberation procedure. I was amazed by his quick reply, yesterday afternoon, if you think that it was Good Friday in Italy.

He is not allowed to treat anybody by the ethics committee. However, he said that the procedure will be open to the public immediately after the end of the trial. So, a few more months...

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby AndrewKFletcher » Sat Apr 11, 2009 6:02 am

Introduced Professor Zamboni's paper and logic to ms world forum in the hope a few more people with ms might learn about this exciting development.

Just goes to show how different this site is and how people here think before reacting. My word, this forum glows in the msworld's darkness.

I was attacked by a minority called a retard and much more. Reminds me of the old google goups mentality.

The mpderator closed the thread down relating to Professor Zamboni. Could he be working for the pharma that runs the forum?

Keep going guys.

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I think all sides have had a chance to express their opinions over the last few days on this rather old topic so I'm closing the thread before it turns more combative.
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Postby cheerleader » Sat Apr 11, 2009 7:34 am

sou wrote:Hi.

The city where I live is very close to Ferrara. It is 30 hours to Venice by ship and less than 1 hour Venice-Padova-Ferrara by car. The 30 hours in ship are not that many, since travelling with ship is not tiring at all.

I contacted Dr Zamboni and asked if I could undergo the Liberation procedure. I was amazed by his quick reply, yesterday afternoon, if you think that it was Good Friday in Italy.

He is not allowed to treat anybody by the ethics committee. However, he said that the procedure will be open to the public immediately after the end of the trial. So, a few more months...

sou


Thanks for sharing this, sou. From all appearances, Dr. Zamboni is a good man, and a caring doctor. I'm glad he returned your inquiry so quickly.

Andrew- that's a shame the other forum was shut down. We're very fortunate at TIMS that the dissemination of "outside the box" information is allowed... Thanks and appreciation to our TIMS moderators-

Go, Wobbly! Keep up the good fight!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Sat Apr 11, 2009 7:51 am

AKF - I love your running cheetah...

The moderator closed the thread down relating to Professor Zamboni. Could he be working for the pharma that runs the forum?


I dont know why pharma is threatened by CCVI There are plenty drugs involved in arterial medicine would it be similar

He is not allowed to treat anybody by the ethics committee. However, he said that the procedure will be open to the public immediately after the end of the trial. So, a few more months...

sou


Can't wait....
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Postby mrhodes40 » Sat Apr 11, 2009 10:38 am

open to the public immediately after the end of the trial. So, a few more months


Wow! Sou did you get the idea they were anticipating success already? the way you wrote it it seems like there was no "If" or "possibly" in that answer.

Wobbly is doing all kinds of new stuff and being better off and more funcitonal??? 8O WOW! :D :D :D

100 people. Not 12 or 8 or some lame thing. 100 people all with proven stenoses that were repaired. All with these repairs being followed up with doppler to assure the blood flow is free.

Speculating wildly, but let's assume there are no new lesions and no progression in these 100 people over the year.

Italy is not the US but I wonder what hope we have of getting the US insurance companies to pay for such a procedure based on the one trial if its findings were that positive?

OTOH, let's say that one trial is done and the outcome was good. Seeming stabilization.

Here's one thing we could argue:
all 100 had stenoses.
all had repairs.
all had (whatever statistic they come up with in the end)sucess

But we don't have to guess if we have stenoses, we can get tested!!

If you have a venogram and it shows a stenosis, could an insurance company deny treatment? How could they say "yes we see the stenosis and we see the trial but we won't treat the stenosis because itis too new?
Does anyon think it will go that way?

I suppose we could say "Either pay for my treatment or I take Tysabri as my doc prescribed....." Isn't that 45,000 a year? :wink:
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both

Postby wobbly » Sat Apr 11, 2009 12:16 pm

marie --how abt both/ this treatment very well may needed 2 be backed up by drugs / i just hate the fact that some dude sitting in the corner says what is best 4 us / managed care = not getting all u need / STAY STRONG ALL :) :) :) :)
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Postby peekaboo » Sat Apr 11, 2009 1:18 pm

mrhodes wrote:
If you have a venogram and it shows a stenosis, could an insurance company deny treatment? How could they say "yes we see the stenosis and we see the trial but we won't treat the stenosis because itis too new? Does anyon think it will go that way?


Maybe they (md's drs) can say it is for cardio purposes...circulation for those of us that sit all day...give a different dx? to get the treatment...
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Postby mrhodes40 » Sat Apr 11, 2009 1:24 pm

Oh my PkBoo! Sneaky! 8)

how abt both/ this treatment very well may needed 2 be backed up by drugs

Hi Wobbly, I believe that is a distinct possibility too. It is possible this triggers an autoiommune process secondarily and also it is possible the lesion will need significant support even after the venous issue is relieved.The area is after all full of immune cells that do not belong there

Venous ulcers are not simple processes either. I am so glad someone is looking though.

Clearly even if you don't think this is "everything", orif it turns out to be only part about MS it is still an important thing to fix. It can't possbily be good to leave venous hypertension banging away at an area of the brain that has MS lesions in it........ 8O

I can't even imagine it being benign..........it has to be bad for us one way or another.
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Postby cheerleader » Sat Apr 11, 2009 1:26 pm

peekaboo wrote:mrhodes wrote:
If you have a venogram and it shows a stenosis, could an insurance company deny treatment? How could they say "yes we see the stenosis and we see the trial but we won't treat the stenosis because itis too new? Does anyon think it will go that way?


Maybe they (md's drs) can say it is for cardio purposes...circulation for those of us that sit all day...give a different dx? to get the treatment...


The doc at Stanford explained that reflux and stenoses in the jugular and azygos veins as found by Zamboni will covered by insurance. Correcting venous insufficiency which involves internal organs is not a "cosmetic" surgery (like varicose veins which might not be covered by some insurance.) Venous return from the brain and spine to the heart is essential for the body's health. Before doppler ultrasound, these blockages were not noticed until autopsy, if at all. In order for insurance to cover the tests, we are using headache and edema as the reason for examination. This is true...and may prove to have a venous cause.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Sat Apr 11, 2009 1:43 pm

YEAHhhhhhh!
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Postby sou » Sat Apr 11, 2009 2:05 pm

Hi.

Dr Zamboni said exactly that "if everything goes well, the procedure will be open as soon as the trial is over and the conclusions have been made."

IF EVERYTHING GOES WELL

He was neither positive, nor negative.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby mrhodes40 » Sat Apr 11, 2009 2:10 pm

explained that reflux and stenoses in the jugular and azygous veins as found by Zamboni will covered by insurance


Well, that is fabulous news Cheer! Three cheers for Cheer! :D :D :D

I am so glad you thought to ask and got that information.
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