Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby Hockeydad » Thu Apr 01, 2010 6:11 pm

Hello, I'm new to all of this as I've only been diagnosed for 2 months. I live in Toronto and the annual American Assoc of Neurologists' meeting takes place here in Toronto in a number of weeks. I"ve attached a link to highlighted presentations. All the major CCSVI doctors are coming here to present; Zamboni, Haacke, Zivadinov etc.
http://csvi-ms.net/en/content/american- ... 7-apr-2010
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Postby cheerleader » Thu Apr 01, 2010 6:33 pm

WeWill...agreed, there are many neuros interested in CCSVI. They tend to be younger, or more curious, or without many pharma affiliations... but even some of the old guard is getting interested. We can't paint them all with the same brush- but it takes some work to find them. Good for you.

Welcome, Hockey Dad-
thanks for the link to the meeting...lots of CCSVI information will be presented. I'd write more, but I just scrolled up and looked at NHE's new pic, and I think I'm started to seize 8O
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: skeptical neurologist

Postby harryp » Fri Apr 02, 2010 10:38 am

1hotmama wrote:I asked my neurologist about Dr. Zamboni's research and he called it, "Zamboni's Balogna". I felt very patronized and was disappointed with his whole attitude. He was more concerned with talking me into trying tysabri which I turned out to be allergic to. He also suggested a !#$%! shrink because my headache never goes away.
Has anyone encountered this type of disbelief from our so called "educated" neurologists in the US? :?: :?:

Hi hotmama,
Not only in the US here in Ireland my granddaughter (a First Class Honours Graduate) got the same response but we will have the last laugh when they all have to eat coke!!!
harryp
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CCSVI testing

Postby Saskatoongal » Sun Apr 04, 2010 1:31 pm

I am wondering has anyone received any testing or has knowledge of the CCSVI testing at the False Creek Health Clinic in BC. I have been doing research and sounds like an interesting place to see if one meets the criteria of CCSVI.
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Re: CCSVI testing

Postby Johnson » Sun Apr 04, 2010 8:56 pm

Saskatoongal wrote:I am wondering has anyone received any testing or has knowledge of the CCSVI testing at the False Creek Health Clinic in BC. I have been doing research and sounds like an interesting place to see if one meets the criteria of CCSVI.


I've been there, had the scans, and can recommend it.

Best of Luck!
My name is not really Johnson. MSed up since 1993
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BC testing

Postby Saskatoongal » Mon Apr 05, 2010 9:26 am

Thanks Johnson! :) Was there quite a wait time for your appointment, and would you recommend it.
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Postby PCakes » Mon Apr 05, 2010 10:56 am

Hi Saskatoon.. Me too on the False Creek experience.. both MRV and Doppler.. yes, i would recommend this facility. Very professional and personable. As is the nature of CCSVI..they are learning as they go.

Good luck!
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Postby kevin4apenny » Thu Apr 08, 2010 3:41 am

Thanx for the info hockeydad!

Cheerleader and 1hotmama, I totally agee re the patronising :x and the involvement of the Pharm co.'s whostand to lose BILLIONS.
I have written to my GP insisting on a 'dianosis for VENOUS BLOCKAGE which would be dangerous'so that if they deny me this right I will SUE the HEALTH BOARD. The doc listened to my jugular vein..??could she tell which DIRECTION it was floweing in :? I think we should shout as loud as possible and money is the only thing that makes people sit up and listen. My country Scotland is supposed to be MS World capital (yeh :?) and coming up to our general election, I am contacting Parties to suggest they get this on the agenda....but I HATE POLITICS :x ).

Akl the best guys
Kev
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CCSVI Liberation Treatment

Postby kenneb9 » Fri Apr 23, 2010 6:20 pm

My wife had her CCSVI Liberation Treatment on March 29th, 2010 in Northern California. The treatment has been a success and we were excited to tell our THISMS friends about the doctor a vascular surgeon.

However, the doctor has informed us that he cannot accept any referrals.
He did however say that if a nuero referred a patient when everything else has failed he would of course be willing to go forward with the treatment.

My wife my the way is very happy and her quality of life has improved greatly.

I believe in going local its faster but not without its problems, we have been lucky. We had local MRVs that were inconclusive, and were referred to Stanford for additional MRVs. These showed blockage. Based on Standfords MRV we were able to get the angioplasty.
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Postby Dovechick » Fri Apr 23, 2010 11:02 pm

kevin4apenny wrote:
I have written to my GP insisting on a 'dianosis for VENOUS BLOCKAGE which would be dangerous'so that if they deny me this right I will SUE the HEALTH BOARD. The doc listened to my jugular vein..??could she tell which DIRECTION it was floweing in :?


I have written you a private message about the kinds of action a group of people are taking in the UK...
Is there anyone else here from the UK that has just joined in the last month or so? Please come and see what we are up to... at
http://www.facebook.com/ms.ccsvi.uk
We also have a website:
http://www.ms-ccsvi-uk.org
We are a pressure group trying to change things in the UK but we need many more people to join us to have a real voice here. We especially need many people to join from Scotland. Although we are a web based group we can't seem to reach the Scots. Don't know why... as I am married to one and have a half Scottish daughter with MS, so feel very connected to MS Scots.
Please get in touch with me, email address is below
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby SofiaK » Tue Jun 15, 2010 5:18 pm

Does anyone have an appointment with Dr Siskin for testing and treatment that they don't want?

I can't get an appointment, never mind soon. I know I have CCSVI from Doppler test results.

It's just torture not being able to sleep (spasms), eat (I choke) or walk (paralysis).

I can't handle long travel. Albany, NY (where Dr Siskin is located) is far enough for me.

Thnak you sooo much.
I appreciate your help,
Sofia K
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Postby erinc14 » Sun Jun 20, 2010 6:14 am

Here is a short medical article from 20 years ago that talks about iron in brains of other diseases

http://www.springerlink.com/content/p4w0271q176247t0/

So it was well known but kept under cover until Zamboni finally ripped the lid off .

Read more: http://www.cbc.ca/health/story/2010/06/ ... alcomments#ixzz0rP1Y6DDx
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Postby concerned » Sun Jun 20, 2010 8:41 am

I don't think anyone denied iron deposits in MS patients.

<shortened url>

There's all sorts of stuff about iron pre-Zamboni.
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Postby cheerleader » Wed Jun 30, 2010 5:50 pm

concerned wrote:I don't think anyone denied iron deposits in MS patients.

<shortened url>

There's all sorts of stuff about iron pre-Zamboni.


You're right---iron has been studied in MS brains for over 30 years. Dr. Mark Haacke writes about this on his site---the thing is, there has never been a good explanation as to why the iron is deposed in the thalamus and along the venous structure of the brain, until Dr. Zamboni's work.
http://www.ms-mri.com/presentations.php
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby concerned » Thu Jul 01, 2010 10:01 am

I just meant that I don't think anyone has been keeping it under cover.
See: the post I was responding to.
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