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

Publié le par Handi@dy

ccsvi-ms-strong.jpgBarre google de traduction nécessaire pour la fin!

Une vidéo de la société US SEP sur la CCSVI: un des médecins de la société commence par une bonne description, puis dénie le rapport CCSVI et SEP car il n'y a pas eu d'études. Il ne parle PAS de l'épouse SEPienne de Zamboni ni des SEpiens qui ont zu l'angioplastie et qui vont beaucoup mieux. Il ne dit pas non plus que la théorie beineuse est sortie 5 fois depuis Charcot. Il évoque les recherches de Buffalo.

Dans les liens, je mettrai une page de conseils de la société US, très dissuasifs.

En hésitant à la question de ce que fait la société pour éclaircir la question CCSVI, il avoue qu'elle suit d'autres pistes thérapeutiques. Il parle des nombreuses pistes qui ont circulé pour la SEP puis été abandonnées.

IL met en garde de la procédure, dit qu'elle ne fonctionne pas toujours et peut être dangereuse.


Irishbear revient remercier en larmes ceux qui lui ont permis de connaître la ccsvi, il sera opéré bientôt, le 27 et dit qu'il va retrouver sa vie et est triste pour ceux qui ne sont pas encore opérés.
Une vidéo de témoignage de ce qu'est la SEP avant la procédure de l'angioplastie en Bulgarie.
Vidéo médicale: un médecin s'insurge contre le scepticisme de certains de ses cllègues! Les neurologues n'ont aucun argument acceptable. Les neurologues ne peuvent pas comprendre car ils n'ont pas la formation pointue requise.
*Echos de murs:

*Steve Garvie  I finally found someone that angioplasty did not stop progression on.This person is missing part of his left juggler.He to will be helped . Those who are writing the non-sense about people afraid to come forward that were not helped by angioplasty....To you i say put up or shut up.I am willing to load some buses with t...he ones that were helped will you load one with the non helped?

Troy Newman What I find interesting, from what I have heard so far .. is that the people who have NOT benefited from the liberation treatment actually had complications that left the IR unable to open the blocked vein(s).

Judy Filipkowski  Steve, you will need a number of buses for those that were helped. Please reserve a seat for me!

Jennifer Crossfield Me too!

Brenda Pachal I soooo want to hear from any that werent helped!!
Kathy Schwindt-Huget they would not get criticism from us on f/b....only compassion.

Jim Mossman
I had seen reports that up to 1/3 did not see significant benefit, at least not right away. I really hope all people undeergoing the treatment post their records to the sites keeping track. It would be nice to hear that they started to se...e improvement after a time, or at least see if disease progression slows or stops.

Dr. Sclafani mentiond patients with problems in a lumbar vein which cannot be treated using current methods. Some others re-stenose almost immediately, so they may neet to wait until adequate stents are deeloped.

We are still in early days....

Darin James I have also found some posts on some places are suspect they get posted lots of replys back and nothing again from original poster...usually on those neg ones . More spin from the other side... change is painful in history and people do amazing things on both sides for their cause. Just saying that some of the post make me scratch my head when they are like that.

Darin James be nice to know ruffly how many have been liberated now to......just one clinic in LA California is doing 20 or more a day. between all countries doing the treatment we must be up there by now eh?

Steve Garvie  your buses will be empty ...mine full

*CCSVI in New Zealand  “There are only two tragedies in life: one is not getting what one wants, and the other is getting it.”(Oscar Wilde)

CCSVI in New Zealand  Multiple Sclerosis, The disease with no conscience, effecting people near your!
Kieth Black (NZ commenter)

"There is great popular interest in two reports of the role of neurovascular venous stenosis in multiple sclerosis and that some of these patients may respond to treatment by angioplasty and/or stenting. SI...R will publish a position statement indicating its support for high-quality ethical clinical research to determine the safety and effectiveness of new interventional M.S. treatments. The position statement, "Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Patients With Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology," is endorsed by the Canadian Interventional Radiology Association and will be published in the September Journal of Vascular and Interventional Radiology [http://www.jvir.org/] ."
--It is important to me that people considering the option of venous intervention for treatment of their multiple sclerosis symptoms understand the stage of this procedure. It is currently thought to be promising, yet quite experimental. More research is needed before we truly know whether it works or if there is simply a placebo effect that we see in patients who have undergone the treatment. If it works, however, it could revolutionize the way we think about multiple sclerosis.
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Carol Schumacher  Looks like the Society of Interventional Radiology will have a statement of CCSVI in the September issue of their Journal. Thank You SIR and Dr Haskal, the new editor-in-chief, for your leadership! viva la revolution!

Rebecca Hoover  Yes, it looks like they will call for high quality research to clear up the issues with CCSVI surgery. I wonder if they will take the position that the CCSVI surgeries should not be performed until this research occurs. Any idea?

Rebecca Hoover  It's interesting that one study showed that blood flow was not at all blocked in MS patients. Things seem really up in the air. That's why I'm guessing they will try to tamp down on the surgeries.
Kathy Hutchinson  Truly wish they could get off the idea they are treating MS and onto treating ccsvi ....unblock blocked veins...pretty straight forward...

Rebecca Hoover
Yes, that is correct, some are calling this an invasive interventional procedure rather than surgery. It is interesting that some research says that when jugular veins are blocked because of injuries or even removed, MS does not result. Tha...t is another reason these procedures are being questioned so vigorously. In any event, it will be interesting to see what the position statement says.

And in the meantime, it would be nice if they would move ahead with research ASAP so we have some answers.

Dyan Summers
‎@ Natalie, Interventional Radiology itself is not at all experimental. Patients have an IR do many things including dialysis catheters, ultrasound guided breast biopsies, chemo port placements, liver port stents, etc. The thing they are co...nsidering experimental is treating for MS. My IR used the codes for venous compression- which is what it is--- and the appeal went through. Good advice for everyone- don't take no for an answer- appeal it all the way if you have to. Blue Cross and many other US insurance policies will cover us. As far as our Canadian friends- unfortunately they don't have any good options.

Natalie Grafwallner Thanks Dyan, great advice.

Rebecca Hoover  Interventional radiology is an an interesting field. These interventioanl radiology doctors are among the highest paid doctors in the USA, averaging about $450,000 per year. The interventional radiologists get paid a lot more than neurologists. The male interventional radiologists get paid more than the female ones do probably because of sexism. In any event, when you see one, you'll know that they make a lot of money per hour. Wow.

Natalie Steiner Carter  My mom will be going for her venogram on Thursday, send prayers!! We need a miracle, she has suffered for so long!!!! I will post updates as we make our journey!

*Patricia McDowell Kimball  Lived inNewfoundland 5years. Where do you think calling people Buddy&Girl came from? Don't call it THE ROCK for nothing! 'Could become a leader in the cause. Trust in good blood, strong roots, positive thought. Politians over history, solid groundbreaking figures. We're fortunate that they joined us, became Canadians. ...We're in motion everybody, don't stop, enjoy the show while we're at it! Better than being down, eh?

*CCSVI at UBC MS Clinic - Information and Support  From the BC/Yukon MS Society newsletter: "The MS Society of Canada also recognizes a need many people with MS have for resources to help them make their own treatment decisions. As Yves Savoie, the MS Society of Canada’s President and CEO has stated publicly, “the Society honours and respects the choices and decisions ...that people make regarding their own healthcare.” If you are considering seeking out CCSVI diagnostic and treatment services at private clinics (whether in Canada or abroad), then here are some questions you should consider asking yourself and the potential treatment providers in order to help you to make a final decision." (scroll to end of link below ~Sandra):

Tom Brewer  In my opinion we instead of hammering neurologists need to ask some pointed and direct questions of the Academy of Neurologists. We need to find out WHO decided and when not to look into veins as a potential problem. Neurologists are only spouting what they have been told eons aqo. It is time to lay out who caused thi...s and work up from there. Someone made the decision… now we need to backtrack on this instead of hammering individuals neurologists. In my opinion they aired. We need to continue research as ccsvi requires this. We do not need to fall into the pail where we become no better than the neurologists we detest now! Keep in mind neurologists erred.. they and likely big pharma as well. MS Societies followed along believing trusting neurologists

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