IVCC/CCSVI, vidéos et échos de murs de ce mardi.

Publié le par Handi@dy


Merci Nab pour ta photo bricolée lol! :0010:

Barre de traduction google indispensable!

Photo de Barb Farrell avec des amis


Dernières nouvelles de Dawn qui annonce avec détails comment s'est passé son doppler et les résultats: elle a la ccsvi et va donc pouvoir se faire traiter et aller mieux.


Chantal Bonneville, je remets sa vidéo AVANT: (en français)
Chantal après la procédure:
Vanessa avant l'OP, plusieurs vidéos:
Les vidéos de Vanessa post op!
Une vidéo médicale en espagnol:
*Echos de murs:

*Denise Manley  The drug companies and doctors are the members of the NMSS and people who have MS are not allowed to be members but participants. So the drug companies own and control the society and we the patients are the cash cows being dragged around by the ring in our nose. STOP PARTICIPATING WITH THE NMSS and join the CCSVI ALLI...ANCE! WHERE THE MEMBERS ARE THE PATIENTS AND THEIR FAMILIES AND FRIENDS!

Denise Manley  Boycott the National Multiple Sclerosis Society! Do not walk for them, do not run or bike or hula hoop to raise money for them! They are not there to wipe out MS, it's a lie!

Nancy Bonneville Church Love, love, love Dr. Zamboni!! He suggests getting the liberation treatment done only at a clinical study. Unless you have ppms! He also dosen't approve of using stents! It seems like there is conflict amongst the ccsvi believers themselves!

Sheran Trapnell Oberholzer Sometimes it is necessary to use a stent. If the vein won't stay open with simple angioplasty you have to do something to keep the blood flowing. Possibly Dr. Zamboni hasn't confronted this problem.

Jennifer Crossfield I would have stayed at the new "normal" had I had a stent, problem is the stents have both a negative/positive vie pont and I'm getting confused! Aghh...

Nancy Bonneville Church It is confusing some doc's use stents when they need to! Some patients go through the procedure and don't want a stent put in. I believe they will invent a stent made just for the jugular vein at some point in time!

Stephen P Taylor
the vascular community just may speed this reverse control problem we have with neuro,s and take it away from them sooner.think of how many years the neuro,s kept there heads in the sand with no proofs of ms being autoimmune or virul, then ...becoming speicalists of ms of nothing.then still refusing to look out side that sand box of theres and at least revisit the vascular side or SOMETHING to see why this iron was staying in the brain.we can go on and on about many different theorys but yet i have seen noon,0 not one of the neuro,s theorys that made any sense of what ms the disease is. it may well be a disease but there is much more PROOF that it is a vascular disease then anything the neuro,s have come up with.we are not talking just a couple of yrs here ,we are talking almost a couple hundred yrs. what chance do we have at them curing cancer or diabetis or anything if there going to keep there HEADS UP THERE ASS FOREVER. just saying...yes we are finally moving forwards denise and i am so tired of the smell of were it,s been.

Denise Manley  Yes Stephen, we are moving past neurology with this. There is nothing the can do so they can only sit still and shut up. While interventional radiology takes over and moves ahead with what they can do and they are making noise! Whooo-rah!

Jennifer Crossfield  I can't believe I don't have you added as a friend. Question about stents. Are they currently designing one in Kuwait? Is there one designed for the vein specifically? Ken T and I were wondering.
Thanks, Jennifer now your friend!

*Tessa Rushton
via Denise Manley: Denise Manley:Don't just listen to what rumors say!Learn about stents as well as ballooning stop listening to people who think they know it all and start reading the documentation. Venous stents have been used safely for ...many years!
WALLSTENT® Venous Endoprosthesis with Unistep™ Plus Delivery System - P980033

Kathleen Lynch  >Tessa: The link is dated. The approval date on that device is November, 2001 and the reference is to venous stenting and grafting used for long-term hemodialysis patients - not relevant to current discussion of ccsvi treatment. Scroll down a few posts for more information.
Kathleen Lynch  People ask me my thoughts on stents. I don't take a strong position one way or the others. Read comment for my reasoning.
Kathleen Jaynes  I was told by the Hubbard Foundation that they follow the Haacke protocol and therefore only use balloon angioplasty, no stents. I would have preferred to go to them since I live in San Diego and that's where Hubbard is located. However, I found an IR about 85 miles north of me that will stent if needed. Just trying to work out my insurance, then on my way!

Kathleen Lynch  I found this byJennifer Crossfield in a different thread: "Dr. Vogl in Germany, stated he would only use them in an emergency case. Never has there been a case."

*Kathleen Lynch
As researcher by training, I am withholding definitive statements about stenting, especially after listening to the experts discuss this situation at the International Symposium. Drs. Siskin and Petrov use stents more routinely than do Drs.... Sinan and Sclafani (see Sclafani's comments on stents on thisisms.com), there is a call among the "big boys" to standardize protocol, ccsvi treatment is still in its infancy, and each set of venous malformation presents it's own idiopathic pathology; therefore, I believe it is too early to make strong claims about stenting without qualifications. The venous stents referenced are available, but are used in hemodialysis patients and do not translate automatically, easily or readily to jugular veins. Do you reading carefully, research thoroughly, consider the source thoughtfully and think critically.

Kathleen Lynch  ‎>Kathleen: I don't know of any doctor who won't consider using a stent. I know of doctors who will use them only under very specific conditions, though.

***Sur la page de leus assoce SEP:

Dawn Skinner  If the MSS needs proof that MSer's have CCSVI here's my proof!
And it didn't take a two year study, just a 15min doppler ultrasound exam. Does it have anything to do with my MS? I don't give a crap... I have blocked Juggular veins, shouldn't I have the right to have that treated MS or not?


Carole Ares  Multiple Sclerosis Treatment to be offered in Panama and Costa Rica Costa Rica Medical Tourism Services and its network of vascular surgeons are offering a unique procedure for Multiple Sclerosis Patient.
Costa Rica MTS is working with a group of highly qualified physicians in Costa Rica and Panama that is applying th...e procedure to hundreds of MS patients with amazing and immediate results at the Hospital Clinica Biblica I San Jose, Costa Rica.The Hospital Clinica Biblica is a world renowned hospital that is fully accredited by the Joint Commission International. (JCI) Our physician will contact the patient or family member responsible and discuss the procedure in detail and decide it is a viable option for the patient. Costa Rica MTS will handle all the logistics including travel, food and lodging in Costa Rica for the MS patient and his family. Our service is turnkey. We provide everything.
Contact us at

Dawn Skinner
I just got tested today for CCSVI and the results were a positive for blockages/reflux.
Why the hell would I go to qualified physcians in Costa Rica or Panama to treat a vascular condition when there are plenty of Neurologists up here in Ca...nada who admit that they don't know what the cause of MS is or how to treat it?
huh, a $5,000 treatment for a year or two, with the possibility of a lifetime of relief with no side effects or MS treatments/injections that cost $20,000- 40,000 a year that have been proven not to work, make me sick and cause cancer or worse can kill me?
My brain my be compromised from iron deposits causing a world of dammage... and I' might be lalbeled "MS" disabiled, however....I'm not stupid. I have CCSVI, there's a treatment for that.

Thanks CaroleAfficher davantage

Bobby O'Toole  In keeping with providing "accurate, up-to-date information about MS" here's a nice story about an approved drug for treating MS.
I especially love how this story came out through Fox "BUSINESS".

"Biogen Idec Inc. (BIIB: 54.93 ,-0.52 ,-0.94%) disclosed five more cases of a rare brain infection in multiple sclerosis patie...nts on Tysabri, which it sells with Elan Corp. (ELN: 4.68 ,-0.08 ,-1.68%), bringing the total number of cases to 63 as of Aug. 4"

... And how the story ends with how the shares of Biogen are down.

"Shares of Biogen closed down 39 cents at $56.52 on Wednesday, while Elan's American depositary shares dropped 2 cents to $4.90."

Dawn Skinner
ohh, rare brain cancer... where do I sign up? and is it approved by the MSS?
Just curious... how much do I have to pay to get this "rare brain cancer" or is this covered by OHIP?
I know my $5,000 angioplasty isn't covered by provincial heal...th care upon reccomendation of the MSS but, ... I'm sure "this rare brain cancer" is.
So glad the MSS wouldn't let an MSer like me recieve a costly, cancer causing treatment when there's cheap, effective angioplasty available... whew, that was close :-) Thanks to the MSS for having my back.
Christopher Alkenbrack  After several attempts of trying to contact Mrs. Royal, this is the answer that I got. As a former School Principal, I`ve learned to discuss and debate in a very open-minded, respectful manner. I was also president of the local MS chapter (volunteer basis) two years ago - I`ve headed fundraising programmes, etc, etc, e...tc. Even at my lowest times I worked for you on a volunteer basis. I can not believe that you are threatened by my request to discuss the issues that I have raised. You have disappointed me.....I was willing to fly from Halifax to Toronto, at my family`s expense, or pay for the phone call at my expense. Honestly, what are you afraid of ?

-Since there was no warning that this was a private communication, I respectfully inform the public of your stance on meeting with people who have MS and who worked for you fund-raising. This is totally unacceptable !!!!! Below is the content of the message received.
Christopher Alkenbrack
This is the message that I received:

Mr. Alkenbrack:

Thank you for this information. We respectfully decline the invitation to meet with you.
We strive to maintain an atmosphere of free and open dialogue where constructive criticism and debate is welcomed. Our staff reserves the right to exercise discretion in ensuring that all interactions, face-to-face or otherwise, meet this standard.

Thank you,

Cristina Toporas | Manager, Evaluation and President's Office
MS Society of Canada | 175 Bloor Street East | Suite 700, North Tower | Toronto, ON M4W 3R8

Our Mission:
To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.
Sandra Whitaker  What a load of CRAP, they have no intention of helping anyone let alone pwMS!!
Amy Gaylord-Preston Christopher...Thanks for making us aware of this refusal to meet with you.
You've been very fair, and presenting many well-informed suggestions. I'm very disappointed that your request for a meeting with your own advocates was refused.
Carol Prest I am really disappointed in this reply, it appears to me that they have no interest in getting the fact to date correct. Every question or concern at best gets a luke warm response and yet representatives from the MS Society are being invited to represent the MS patients at politcal committees and study recommendations. I believe they should no longer represent MS issues unless there is patient representation also invited and all correspondence or meeting minutes must be publically disclosed
Amy Gaylord-Preston Carol is so right...There need to be patient representatives at political committees. The MSS representatives don't seem to have up-to-date information.
Jamie Chalmers  This is so hilarious.... April Royale can't even answer her own letters. Thank you very much for sharing, The MS Society not willing to disscuss or debate CCSVI ........Proof when Yves Savoie our president ran out of the Radio interview 2 weeks ago. Gee I wonder why????
Anna Delorme lol once again this shows the weakness in the society and how it is 'run'. They aren't interested in the truth and in something that actually works in treating MS. And as a just kidding . . . I've met Christopher over the phone and in person and he's not as nearly as threatening as he looks. ;)
Kevane Bona Stronge ‎...they will realize their mistakes once their coffers run dry...and that is already happening!!! nobody and i mean NOBODY wants to give to a charity like this one!!!
Chloe Emm  I'm very sorry that you are being dismissed, Christopher, especially after your prior volunteer service to the MS Society. It would certainly be in the MS Society's best interests to convene a Townhall meeting so that MSer's have an opportunity to gain answers to our increasingly long list of questions. If the MS Society cannot even respond TO us, why on earth would we ever want them to act FOR us?
Christopher Alkenbrack Great point Chloe !
Carol Prest  Dr. Hubbard (Neuro) talks about his disappointment with the backlash from other Neuro's regarding CCSVI, listen to the last couple minutes where Dr. Haacke explains the German and Sweden Study results and why they will be proven to actually support Zamboni's study.
Chloe Emm  I look forward to the MSSC disseminating the new corrected information when it is published! And I hope news of this will prompt the MSSC to ensure that the prevalence studies they are funding are using the proper protocol and the researchers know how to interpret the results properly so that these kinds of mistakes don't occur again and waste valuable time and funds.
Deb Turcotte  Anyone in Sask living near an A & W please contact me or Michelle Walsh Immediately, We need posters up in ALL SASK locations for the Sask. CCSVI Meet & Greet Info Session happening Sept 12th. A&W's would be a good location this week to let people know about it. There will be public there with loved ones with MS & CCS...VI We can give you an already made up poster to print off on your comp. THANKS!
Deb Turcotte  Dr.Sandy McDonald: "I am a cardiovasvular surgeon, I fix blood flow. I am,in that sense, a plumber. When I see a serious plumbing problem I wantto fix it. When I see the whole house is suffering, I want to fix thepipes. I can do that without harming the wiring in any way and do notsee why we condemn the family to miser...y while we wait for anelectrician to give his permission."
Tessa Rushton  via Sarah Rainbolt : via Kerri CCSVI AUSTRALIA "Attached is brief summary of the proposed trial to be conducted by MS Research Aust. I am interested in people's thoughts on 1) how they appear to be only testing MSers in remission ('without residual disability') and 2) what constraints there are using the doppler ultrasound to 'independentl...y demonstrate whether there is a significantly higher prevalence of venous drainage abnormalities on PwMS.'"
Afficher davantage
Abnormal venous drainage of the brain and spinal cord in patients with MS
ms-ccsvi-uk  Michele: Website news... We are going to withdraw the forum from the website as it takes up a lot of webspace and is not much used... for a short while the posts will be available to view as archive material.
ms-ccsvi-uk  Michele: News of the conference: CCSVI The Way Forward... We are still awaiting confirmation of who the panel is going to be, Ashton Embury has been invited but has yet to reply. Dr Haake will be leading the panel. The doctors will seek to come to a concensus about diagnosis and treatment and will feed back on the Satu...rday. EHC has posted a page where you can book your ticket (cost £35 for the day including lunch and refreshments) here: http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi-conference.html
Afficher davantage
CCSVI Conference 30 Oct

*Yvonne Andersen  Appointment with my neuro this afternoon. That's about all I have to say about that. Same old, same old. Trials, studies.....But he will kindly still work with patients who have been liberated and he will be respectful of patients who make this decision.

*Patricia McDowell Kimball
From Sheilah Hendry: A warning for anyone going to India for CCSVI treatment:BRAMPTON, Ont. — Officials are confirming a new superburg first found in India and Pakistan has turned up at an Ontario hospital. The province's health ministry says antibiotic-resistant NDM-1 bacteria was confirmed at a Brampton hospital this weekon Sunday


*Sandra Whitaker  is quite
confused with this clinical trial stuff:( Does it mean they will test
people and offer only some chosen ones the real treatment? I am not
understanding if someone had blocked arteries did they only unblock some
people at first?? Aren't clinical trials for drugs not procedures? Can
...anyone enlighten me?


Commenter cet article

annabelle 26/08/2010 20:43

WOW ! Vanessa ... elle a l'air coriace en tout cas, c'est une winneuse !

Handi@dy 29/08/2010 20:05

Beaucoup de SEPiens le sont, heureusement! :0010: