CCSVI in Canada: Who/What/Where

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

Postby layniesmom » Sun Dec 20, 2009 6:29 pm

I saw that too, but the petition was not created by me. His name is spelled right on a couple of other spots on though. There are well over 5000 signatures on it already. Looks like a lot of people are behind this treatment (despite the typo).
User avatar
layniesmom
Newbie
 
Posts: 9
Joined: Fri Nov 06, 2009 3:00 pm

Advertisement

Postby Johnson » Sun Dec 20, 2009 6:52 pm

I do not know if these people have any interest in CCSVI , or not (yet), but there is an interventional cardiologist in Kelowna doing percutaneous intervention - angioplasty.

http://www2.news.gov.bc.ca/news_releases_2009-2013/2009HSERV0032-000644.htm
NEWS RELEASE

For Immediate Release
2009HSERV0032-000644

November 20, 2009
Ministry of Health Services
Interior Health
Cardiac Services BC

FIRST CARDIAC PROCEDURE PERFORMED IN KELOWNA

KELOWNA – The first-ever cardiac procedure to be performed at Kelowna General Hospital (KGH) was successfully completed earlier this week, marking the first time a percutaneous coronary intervention (PCI) has been done anywhere in the province outside of the Lower Mainland and Victoria.

Health Services Minister Kevin Falcon, Kelowna-Mission MLA Steve Thomson and Kelowna-Lake Country MLA Norm Letnick were joined by Dr. Richard Townley, the interventional cardiologist who performed the procedure, Ron Kaerne, the patient who underwent one of the first PCIs – also known as angioplasties – and Interior Health representatives to celebrate the milestone.
Anybody living in Kelowna might try this lead.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Postby thornyrose76 » Mon Dec 21, 2009 1:54 pm

nicko wrote:Thornyrose,

I know how you feel. Although My MS started when I was 24ish, a little later then yours. I lost my career, was making good money in the banking industry. Lost numerous girlfriends... I don't have enough energy to even consider starting a family at this point and i'm 29.

Ms takes your dreams and fluuushes them down the drain.

I'm not in a wheel chair yet... but its not far off. My fatigue is so bad at this point I can't do anything, especially over the last couple weeks. Looks like the mitoxantrone and copaxone combo is going to be another failure. Mitoxantrone did slow things down for a year or so, but i'm at my max doses now....

Its just so frustrating waiting for the medical community... Especially when we *could* be fixed up right now.


I can completely relate to what you are feeling, I've lost friends, and in some ways family, which has left me completely dumbfounded.


Any medications, namelky Betaseron, haven't worked, and meds I'm taking to treat the symptoms hardly or don't work either. I have this GUT feeling ccsvi might lead to the truth, meaning what causes MS and how to treat it. I really believe that. That in of itself is for me some days hard to believe. I'm sometimes left thinking "Oh, sure probably just another RED HERRING," but then I snap out of it and think "no, no, there's something to this, there on to this." THEY MUST, MUST FOLLOW THRU ON THIS. That is starting to happen, studies are starting to pop everywhere, worldwide. I really think WE are all going to be ok.
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Re: Petition to Health Canada

Postby thornyrose76 » Mon Dec 21, 2009 2:11 pm

layniesmom wrote:I did not create this petition, but I think it's of utmost importance that we support and sign it...
http://www.gopetition.com/petitions/the ... edure.html

MULTIPLE SCLEROSIS AND THE ZAMBONI PROCEDURE

New research conducted by Dr Zaboni in Italy has shed new light on this nightmare disease, for decades it has been believed that MS is a autoimmune disease but Zamboni has proved that it is actually a vascular disease. Over 500 MS patients have been tested and all have shown deformities in their Jugular veins. No one in the control groups had the deformities.

Doctors in Italy, The US and Poland have carried out procedures on dozens of MS patients, where stents are placed in the Jugular veins to allow the free movement of blood to the brain. Those who have undergone the procedure report miraculous improvement in their condition.

WE WOULD LIKE THE GOVERNMENT TO EXPEDITE THE APPROVAL TO USE THIS TREATMENT. TIME IS OF THE ESSENCE. If you or someone you know has MS please, please sign this petition.

http://www.gopetition.com/petitions/the ... edure.html
Thanks for the information. I just signed it!
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Postby suenz » Thu Dec 24, 2009 11:07 am

After reading so many different responses from so many other MS patients and supporters on forums and then to hear all the discouraging responses & news about so many neurologists and the MS Societies etc. showing a vague interest in CCSVI research we need to really start pooling our money-OUR DONATIONS into reliable sources who want to research this new discovery right now!

I could not tolerate Copaxone treatment for just over a year and also have a number of reactions to other medications. I am presently using diet and supplements and the support of family to get by right now. So i would really love, like so many other MS people, to see that these new CCSVI studies take off sooner rather than later. We are not testing anew drug here either - this is a medical procedure that just needs to be verified.

Strength in numbers, so lets stick together and make it happen

Have a Merry Xmas and a Healthy Happy New Year - Let's start 2010 with a BIG BANG!!
User avatar
suenz
Getting to Know You...
 
Posts: 13
Joined: Sat Nov 21, 2009 3:00 pm
Location: Ottawa, Canada

CCSVI

Postby amc » Tue Jan 12, 2010 6:58 am

HI...to all Maritimers! Our 17 year old has just been diagnosed and we are at the stage where we get to help her decide on which drug she will try. Heavy decision for that age. Obviously we are very anxious to have her scanned and therefore share everyone's frustration. We are in the Halifax area.
User avatar
amc
Getting to Know You...
 
Posts: 24
Joined: Thu Nov 26, 2009 3:00 pm
Location: Halifax Nova Scotia canada

Postby dlb » Tue Jan 12, 2010 7:30 am

Quoted from suenz: After reading so many different responses from so many other MS patients and supporters on forums and then to hear all the discouraging responses & news about so many neurologists and the MS Societies etc. showing a vague interest in CCSVI research we need to really start pooling our money-OUR DONATIONS into reliable sources who want to research this new discovery right now!


I think you are right.... the neuros & everyone that has previously been dealing with & researching & treating MS have just had their world rocked, just as we patients have. The REALLY exciting news is that a whole new team of players - the cardiovascular people & open-minded GPs & radiologists are jumping on this, whole-heartedly. These people are brilliant as well and they can see the merit in all of this. Every day on this forum there is someone who has made contact with another vascular surgeon who has applied for funds to put a study in place. Every study means more people are helped & more knowledge is gained. We are on the cusp of this, I do believe.[quote][/quote]
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

Postby sbr487 » Tue Jan 12, 2010 8:42 am

It is not only important to contribute the entities who are pursuing research in this area, but we should also make it VERY apparent to some of the MS societies who are notoriously biased and inactive that not a penny from us will go to them.
User avatar
sbr487
Family Elder
 
Posts: 861
Joined: Tue Nov 24, 2009 3:00 pm
Location: India

Postby youbetcha » Tue Jan 12, 2010 11:45 am

sbr487 wrote:It is not only important to contribute the entities who are pursuing research in this area, but we should also make it VERY apparent to some of the MS societies who are notoriously biased and inactive that not a penny from us will go to them.


I'm with you on this one!
User avatar
youbetcha
Family Member
 
Posts: 93
Joined: Mon Nov 30, 2009 3:00 pm
Location: ON, Canada

Postby nicko » Tue Jan 12, 2010 10:43 pm

thornyrose76 wrote:
nicko wrote:Thornyrose,

I know how you feel. Although My MS started when I was 24ish, a little later then yours. I lost my career, was making good money in the banking industry. Lost numerous girlfriends... I don't have enough energy to even consider starting a family at this point and i'm 29.

Ms takes your dreams and fluuushes them down the drain.

I'm not in a wheel chair yet... but its not far off. My fatigue is so bad at this point I can't do anything, especially over the last couple weeks. Looks like the mitoxantrone and copaxone combo is going to be another failure. Mitoxantrone did slow things down for a year or so, but i'm at my max doses now....

Its just so frustrating waiting for the medical community... Especially when we *could* be fixed up right now.


I can completely relate to what you are feeling, I've lost friends, and in some ways family, which has left me completely dumbfounded.


Any medications, namelky Betaseron, haven't worked, and meds I'm taking to treat the symptoms hardly or don't work either. I have this GUT feeling ccsvi might lead to the truth, meaning what causes MS and how to treat it. I really believe that. That in of itself is for me some days hard to believe. I'm sometimes left thinking "Oh, sure probably just another RED HERRING," but then I snap out of it and think "no, no, there's something to this, there on to this." THEY MUST, MUST FOLLOW THRU ON THIS. That is starting to happen, studies are starting to pop everywhere, worldwide. I really think WE are all going to be ok.



I have a hard time believing this CCSVI most of the time as well. The first look I took at Zamboni's paper I almost dismissed it. But I was going off of numbers without all the information. I was waiting for something to pop up shooting it down. But I think were at the point now where this isn't going away. But theres still that little voice in the back of my head saying its too good to be true.

But after all this suffering, don't you think we deserve something good? This will hopefully stop our damage and maybe in a few more years they'll bring something out to help repair the damage thats already done. I know they're working on it.
User avatar
nicko
Family Member
 
Posts: 99
Joined: Fri Jul 08, 2005 2:00 pm

Re: CCSVI

Postby nicko » Tue Jan 12, 2010 11:01 pm

amc wrote:HI...to all Maritimers! Our 17 year old has just been diagnosed and we are at the stage where we get to help her decide on which drug she will try. Heavy decision for that age. Obviously we are very anxious to have her scanned and therefore share everyone's frustration. We are in the Halifax area.



I hope your dealing with Trudy at the MS Clinic in Halifax. She's gotten me through a buch of hard times. Some of the other nurses there are awful. Well one in particular I dealt with when I was first diagnosed.

I had a hard enough time dealing with the diagnosis when I was 24-25. I can't imagine 17. The only thing I can recommend is jump on a drug quickly. But at least you have some very good news with CCSVI to look forward too. A few of us are pushing buttons to try and get some scans here in Halifax. Maybe we'll hit the right buttons eventually.

Good to hear from other maritimers though.
User avatar
nicko
Family Member
 
Posts: 99
Joined: Fri Jul 08, 2005 2:00 pm

Postby beerduff » Wed Jan 13, 2010 9:45 pm

For us Western Canadians, Vancouver seems to be the best bet for getting some movement in the test phase.


NEW: MS researchers at VGH and UBC Hospital are eager to test the validity of new claims by Dr. Paolo Zamboni that narrowing of veins occurs frequently in MS, which could alter the way the disease is diagnosed and treated. Researchers urgently require funding to purchase new MRI equipment and begin a new study. If you are interested in helping to fund this new research on Chronic Cerebrospinal Venous Insufficiency (CCSVI), please click https://vgh-ubchospitalfoundation.akara ... 336&mid=48, follow the screens and choose " Multiple Sclerosis - CCSVI" from the drop down list of funds.
User avatar
beerduff
Family Member
 
Posts: 41
Joined: Tue Dec 22, 2009 3:00 pm
Location: Calgary AB

Postby happy_canuck » Thu Jan 14, 2010 1:21 am

beerduff wrote:For us Western Canadians, Vancouver seems to be the best bet for getting some movement in the test phase.


NEW: MS researchers at VGH and UBC Hospital are eager to test the validity of new claims by Dr. Paolo Zamboni that narrowing of veins occurs frequently in MS, which could alter the way the disease is diagnosed and treated. Researchers urgently require funding to purchase new MRI equipment and begin a new study. If you are interested in helping to fund this new research on Chronic Cerebrospinal Venous Insufficiency (CCSVI), please click https://vgh-ubchospitalfoundation.akara ... 336&mid=48, follow the screens and choose " Multiple Sclerosis - CCSVI" from the drop down list of funds.


We are tracking what's happening at UBC closely on the Facebook page "CCSVI at UBC" (link in my signature).

When they upgrade their MRI to scan down the neck, they will be able to offer both advanced SWI and 4D TRAK at the same location to get at both the iron deposits and the venous structures.

Donations are to fund this research directly -- please pass to anyone with an interest in advancing the study of CCSVI!

cheers,

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 3:00 pm
Location: Victoria, BC Canada

Maritimers

Postby fiddler » Thu Jan 14, 2010 4:58 am

Hi amc, nicko and other Maritimers:

It would seem to me that Halifax (though perhaps not the MS Clinic, rather interventional radiologists and vascular people) would be the best place to generate interest in testing for and even fixing CCSVI. Yes, I said fixing, because if vein deformities are found, why in heck shouldn't they be fixed (regardless of the certainty of a link to MS) - that's what one woman has done in New York this week: just got an interested vascular specialist to check out her MS-afflicted husband CCSVI, who then did an angioplasty on a partially blocked jugular the same day.

I'm in Fredericton and don't have many contacts in Halifax, certainly not in the medical community. Is there an MSer or the spouse of an MSer in Halifax who wants to take this on? I have links in my blog to background material regarding Doppler ultrasound and MRV protocols for CCSVI:
http://www.my-darn-ms.blogspot.com
What I don't have there yet is a nice, brief but clear summary of what CCSVI is and why it might be a primary cause of MS. Can someone point me to their favorite summary?
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Postby DizzyLiz » Thu Jan 14, 2010 1:24 pm

For Canadians in eastern Canada,

the msLiberation Group is actively raising funds, and lobbying provincial and federal governments to promote CCSVI work.

Please check out the site and support us all!

http://www.msliberation.ca/MS_Liberatio ... lcome.html
User avatar
DizzyLiz
Family Member
 
Posts: 29
Joined: Mon Nov 30, 2009 3:00 pm
Location: Ontario, Canada

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service