Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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erinc14
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Post by erinc14 » Sat Jul 03, 2010 5:48 am

8O :twisted:
Dear Editor:
During this past weekend of June 27th and 28th. I attended a family function where by an Ontario MS Society Ambassador was in attendance. Because I have MS my brother asked this Ambassador his thoughts on Dr. Zamboni and his Liberation Treatment. This was his quoted reply " Dr. Zamboni should be tied up and shot." One would assume being an ambassador for the MS Society that his views are in fact the views of the entire board during discussion behind closed doors.
I find it amazing that when I ask my neurologist a question about the disease, it's origin, the future, the purpose of the drugs I take weekly I get a consistent " well we really don't know." Now we have Dr. Zamboni who has a solid logical theory with answers that lay people can understand and digest. What organ in our body does not need a steady consistent flow of blood? If this was any other organ the procedure to unblock the vein would be performed asap in order to allow that organ to function properly.
From where I sit Dr. Zamboni has done nothing less then try and help people live better lives. He has been extremely successful so far in getting people out of their wheel chairs, feeling their limbs and working. Significantly more then my neurologist has done.
Hardly a reason to shoot him.
What is really going on at the MS Society and why do they have no interest in our well being?

http://www.publishaletter.com/readletter.jsp?plid=20475

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Algis
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Post by Algis » Sat Jul 03, 2010 7:41 am

This thread have some wrong indexing (tech issue)

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NHE
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Re: Error Messages

Post by NHE » Sat Jul 03, 2010 11:46 am

Algis wrote:This thread have some wrong indexing (tech issue)
Please see the following post in the support forum which discusses these errors.

http://www.thisisms.com/ftopict-7112.html

Thanks, NHE

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mandamurr81
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Political Action

Post by mandamurr81 » Thu Jul 08, 2010 7:57 am

This message is aimed primarily at my fellow Canadians. The inaccessability of CCSVI screening and treatment, is a symptom of the restrictive and authoritative state power in this country. We need to resist the socialist agenda, which does not make things better for everyone. It makes things slightly better for the few, and drastically worse for many.

We need to fight for our right to self-determination. We are facing rapidly increasing regulation and taxation, which is evident in this issue, as well as many others. I am trying to get a discourse started to this end. Please visit my blog and feel free to share your opinion as well;

canadianmoderatelibertarian.blogspot.com

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bigbro
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Post by bigbro » Tue Jul 13, 2010 2:09 am

hey cheerleader...great thread, beenreading for a week, had never heard of ccsvi before that
my brother who mentioned it to me saw his neuro today.who was negative,ofcourse. brother said his neuro gently pinched the sides of his neck between thumb and forefinger and said you do not have ccsvi...is this normal and is it possible to be checked that way.

... 8) bro

concerned

Post by concerned » Tue Jul 13, 2010 7:58 am

mandamurr81 wrote:This message is aimed primarily at my fellow Canadians. The inaccessability of CCSVI screening and treatment, is a symptom of the restrictive and authoritative state power in this country. We need to resist the socialist agenda, which does not make things better for everyone. It makes things slightly better for the few, and drastically worse for many.

We need to fight for our right to self-determination. We are facing rapidly increasing regulation and taxation, which is evident in this issue, as well as many others. I am trying to get a discourse started to this end. Please visit my blog and feel free to share your opinion as well

Capital L Libertarians are just republicans who'll let you smoke pot, and everybody knows that. ALSO --- this probably isn't the place for propaganda mandamurr, but while we're on the topic:


http://en.wikipedia.org/wiki/For_Ourselves
(more my kind of libertarianism.)


(p.s.- how's The Overton Window?)

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cheerleader
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Post by cheerleader » Tue Jul 13, 2010 8:08 am

bigbro wrote:hey cheerleader...great thread, beenreading for a week, had never heard of ccsvi before that
my brother who mentioned it to me saw his neuro today.who was negative,ofcourse. brother said his neuro gently pinched the sides of his neck between thumb and forefinger and said you do not have ccsvi...is this normal and is it possible to be checked that way.

... 8) bro
Hey Bro-
Pinching the neck is a new one. No, that won't really tell anyone much about your brother's health. Welcome to the site, learn all you can. If you're in the states, take the research to local universities, vascular doctors and interventional radiologists. They are more open to looking into CCSVI...and aren't really pinchers.
take care-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

Cece
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Post by Cece » Tue Jul 13, 2010 9:29 am

LOL on the pinching neck test! Wonder if that's how they'd diagnose a thrombosis too! Or a stroke. Or anything at all.

An MRV, which is an MRI of the veins, or a transcranial doppler ultrasound, or a catheter venogram are all accepted tests. The last one is invasive but the most definitive.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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leooreo
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PINCHING THE NECK ????

Post by leooreo » Wed Aug 18, 2010 2:44 pm

COME ON - NEUROS... WHAT DO YOU TAKE US FOR - IDIOTS. SHAKING IN YOUR BOOTS??????????? SCIENCE IS HERE AND I AM LIVING TO SEE THIS MIRACLE. UNFORTUNATELY, THOSE THAT ARE SEVERELY DAMAGED, MAY ONLY SEE SOME IMPROVEMENTS. THIS WILL SAVE MOST MS PEOPLE AND FUTURE CASES WHICH ARE CAUGHT EARLY. THINK ABOUT IT. YOU MAY NEED SOME MYLEIN REPAIR THERAPY WHICH IS NOT HERE YET.

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courtneylittle29
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Post by courtneylittle29 » Wed Aug 25, 2010 11:41 am

I'm wondering after looking high and low seemingly everywhere how common, if at all it is to have all 5 of the criteria needed for CCSVI?

As I have all 5, and I have yet to hear of anyone else having ALL 5!!
Anyone?

(again I'm really sorry if I posted this message in the wrong spot, my eyes are giving me problems at the moment and i can't bare staring at the screen any longer! )

hope everyone is doing well!!
:D
Courtney

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cheerleader
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Post by cheerleader » Wed Aug 25, 2010 1:26 pm

courtneylittle29 wrote:I'm wondering after looking high and low seemingly everywhere how common, if at all it is to have all 5 of the criteria needed for CCSVI?

As I have all 5, and I have yet to hear of anyone else having ALL 5!!
Anyone?

(again I'm really sorry if I posted this message in the wrong spot, my eyes are giving me problems at the moment and i can't bare staring at the screen any longer! )

hope everyone is doing well!!
:D
Courtney
Courtney--I do believe you may be the first with all 5 of the Zamboni criteria. Sadly, there is no prize for this :)
Hope you've got a doctor that is willing to treat. Take care and keep us all posted--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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courtneylittle29
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Post by courtneylittle29 » Wed Aug 25, 2010 5:40 pm

seriously the first? wow... that sucks. i'm planning on going to albany this december... i really hope they treat me.

thanks

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NHE
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Re: Zambonic Criteria

Post by NHE » Wed Aug 25, 2010 9:54 pm

Hi Courtney,
courtneylittle29 wrote:I'm wondering after looking high and low seemingly everywhere how common, if at all it is to have all 5 of the criteria needed for CCSVI?

As I have all 5, and I have yet to hear of anyone else having ALL 5!!
Anyone?
I have read of at least one other person. I don't remember which thread that was discussed in though. It might have been in Dr. Sclafani's thread but don't hold your breath. A site specific Google search might fish it out.

NHE

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MegansMom
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Post by MegansMom » Fri Sep 03, 2010 7:23 am

bigbro wrote:hey cheerleader...great thread, beenreading for a week, had never heard of ccsvi before that
my brother who mentioned it to me saw his neuro today.who was negative,ofcourse. brother said his neuro gently pinched the sides of his neck between thumb and forefinger and said you do not have ccsvi...is this normal and is it possible to be checked that way.

... 8) bro
Oh my GOODNESS! I have heard it all.........was he implying he had "magic touch" or "x-ray pinchers" for that normal vein assessment or what? I have been an nurse (RN) for close to 40 years and this has to take the cake for all time implication of "God-like" ability........

Can you imagine some patients will absoutely buy this CRAP if its spouted by their Neuro ( patients tend to elevate the ability of any Doctor they have had for a while)

Cat
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

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Lydia_S
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Post by Lydia_S » Thu Dec 02, 2010 8:22 am

Hi,

I am Lydia I’m from Greece and my boyfriend has MS. I’ve been reading this forum for quite a long time. I haven’t joined you sooner, because my English aren’t very good.

We’ve been trying to understand ms and after a lot of reading and talking to people we were both convinced that ccsvi must really have something to do with ms. So he did the ultrasound. Left and right IJV are OK. The doctor suspects there might be something wrong with the azygous vein so he asked him to do an angiography. We’ve scheduled to do so within this month.

My boyfriend has lesions mostly in his spine and I think that he would be categorized to the Primary Progressive. I’ve read Dr’s Zamboni protocol and I’m afraid that he belongs to pattern D. That he will have problem with the azygos and lumbar veins which can’t be fixable, at least until now.

I was wondering if there is someone who had problems only with the azygous vein, because almost all of the cases I’ve been reading had also problems with the IJV. I would really appreciate your opinions and your experience.

Thank you all.

(I think my English are coming back to me…it took me a while to write this…but I did it!!!)

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