IVCC, CCSVI, vidéos et échos de murs de ce samedi.

Publié le par Handi@dy

Barre google de traduction indispensable!

 

ccsvi feuille erable ms ccsvi

Dawn Skinner et ses résultats spectaculaires après angioplastie, dernière vidéo!
 
*Echos de murs:
*Jenna Machala  Who really cares if CCSVI is related to MS?
Vous, Patricia McDowell Kimball, Suzanne Walsh Augustt, Sandie Paluc  et 16 autres personnes aimez ça.
Shirley Renshaw I know it is but fix us now anyway. It is becoming a feeble excuse :(
Jennifer Crossfield Not I!

*Mark Lane
has been Liberated and is en route back to the ROCK!
Mark Lane Thank you Poland for your kind hospitality, empathy and professionalism.
Mark Lane I feel great! Life is good! Never had many issues but any of those I did have seem to be slowly dissappearing. I look forward to the days, weeks and years ahead!!
Mark Lane Hi Perry, I has stenosis of my R Internal Jugular of approximately 70%. The Left jugular and the azygous were fine. Glad to hear you are feeling better also. I will touch base upon return.
*Nadia Filion  Envoyé à la ministre de la santé fédérale par Kirsty
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Nadia Filion
Q-3622 — September 16, 2010 — Ms. Duncan (Etobicoke North) — With respect to chronic cerebrospinal venous insufficiency (CCSVI): (a) do the Canadian Institutes of Health Research (CIHR) or Health Canada recognize the Consensus Document of t...he International Union of Phlebology (IUP) on the diagnosis and treatment of venous malformations, in which CCSVI is recognized as venous truncular lesions obstructing the main outflow routes from the central nervous system; (b) does CIHR or Health Canada recognize the recommendations by the IUP expert panel for therapeutic interventions, including angioplasty, stenting, or open surgical repair of the lesions, in proven CCSVI cases; (c) did anyone from CIHR or Health Canada attend the July 26, 2010 CCSVI Professional Symposium and, if not, (i) was there a review of the findings of the Symposium, (ii) was the review included in the process for the August 26, 2010 meeting between CIHR and the Multiple Sclerosis Society of Canada (MSSC); (d) what were the terms of reference for the August 26, 2010 meeting between CIHR and the MSSC; (e) in detail, what were the steps taken in the review of the current state of CCSVI science for the August 26 meeting and, specifically, (i) were international experts outside of the United States consulted, (ii) what process was undertaken to ensure fair and unbiased reviewers, (iii) what check of reviewers’ backgrounds was undertaken regarding links to specific organizations, review panels and grants obtained, (iv) which, if any, of the reviewers had previously spoken for or against the CCSVI theory or liberation procedure, (v) were reviewers who had experience or expertise with CCSVI selected and, if not, why not, (vi) which, if any, of the reviewers declared a conflict of interest, (vii) what, if any, action was taken to address any identified conflict of interest; (f) did the Health Minister review the biographies of the committee members for the August 26 meeting (i) if not, why, (ii) if so, were any problems identified and any action taken; (g) what published papers were reviewed by panel members, broken down by (i) those that confirm venous malformations in Multiple Sclerosis (MS) patients, (ii) those that deny venous malformations in MS patients, (iii) those that neither confirm nor deny venous malformations in MS patients; (h) were international practitioners, such as those in Bulgaria, Italy, Kuwait and the United States, consulted to learn (i) how many liberation procedures they had undertaken, (ii) what, if any, improvements their patients experienced, particularly in relation to fatigue, "brain fog", motor skills, and Expanded Disability Status Score; (i) what were the details of the agenda for the August 26, 2010 meeting; (j) what will be the process for establishing the CCSVI working group, announced August 31, 2010, and (i) will it be an open or closed process, (ii) will it include CCSVI and liberation procedure experts from Canada, such as Dr. Sandy MacDonald, and around the world, (iii) who will Chair the group, (iv) how often will it meet, (v) how often will it report and to whom; (k) what are CIHR and Health Canada’s responses to the Society of Interventional Radiology’s September 2010 position statement, particularly its statement that it “strongly supports the urgent performance of high-quality clinical research to determine the safety and efficacy of interventional MS therapies, and is actively working to promote and expedite the completion of the needed studies”; (l) prior to the CIHR’s announcement on August 31, 2010 that pan-Canadian clinical trials on the liberation procedure would not go forward at this time, how many provinces or territories requested that the federal government undertake national clinical trials; (m) since the beginning of 2010, how many Canadians have travelled abroad for the liberation procedure and what, if any, tracking has CIHR or Health Canada undertaken regarding each patient’s procedure, progress and related expenses; (n) will Health Canada be undertaking a review of the liberation procedure at each location it is performed worldwide, including an examination of (i) the cost, (ii) the number of procedures performed, (iii) the data collected, (iv) the safety and efficacy of the procedure, (v) the follow-up, (vi) the ranking of the sites for Canadians wishing to pursue this treatment; (o) what consideration has CIHR or Health Canada given to how the August 31 recommendation not to proceed with national clinical trials will impact the number of Canadians travelling outside of Canada for the liberation procedure and what, if any, studies have been undertaken to address the possible impacts; (p) will CIHR or Health Canada undertake any studies relating to any challenges MS patients face on returning to Canada after receiving the liberation procedure abroad, including medical complications, the refusal of treatment by neurologists or practitioners and the refusal of care by long-term health facilities; (q) will the government grant the $10 million the MSSC has requested for research and, if so, when; (r) how much of the $16 million the government allocated to CIHR will be available for (i) MS research, (ii) CCSVI research; (s) will CIHR funds be made available to assist in the creation of a registry that collates data regarding the progress of MS patients who undergo the liberation procedure and, if so, (i) who will be involved in its development, (ii) what is the timeline for development and roll-out; and (t) what research is CIHR or Health Canada undertaking or funding regarding (i) an atlas of anatomical venous variations in the neck and chest, (ii) treatment for venous inflammation, iron storage and hydrocephaly, (iii) possible linkages among CCSVI, MS and other unidentified factors, (iv) treatment and follow-up protocols, (v) design of safe apparatuses and procedures to keep liberated veins open?Afficher la suite
Il y a 16 heures · J’aimeJe n’aime plus · 1 personneChargement...
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Thérèse Laliberté Les questions qui devaient être posées ont été posées et se devaient de l'être.Le Dr Duncan comprend bien la situation et les enjeux en cause!
Nadia Filion  ‎20 sept dernier
Ms. Kirsty Duncan (Etobicoke North, Lib.):
Nadia Filion
Mr. Speaker, today people living with MS are protesting across this country, including on Parliament Hill, for clinical trials for the new liberation procedure for chronic cerebrospinal venous insufficiency or CCSVI.




...Over 1,500 liberation procedures have been performed worldwide, with researchers from Bulgaria, Italy, Kuwait and the United States showing similar results, namely that 87% to 90% of MS patients show venous abnormality. Of the 400 cases reviewed by Canada's Dr. MacDonald, 90% show a venous problem and, of the 381 patients angioplastied, the gold standard, by Dr. Simka in Poland, 97% show a problem.




We need evidence-based medicine in Canada. Again, I call on the government to collect the evidence through clinical trials and a registry. Time is brain and any delay in clinical trials possibly means more damage and may mean the difference between walking and not walking, living on their own or in care, or living and not.

CCSVI at UBC MS Clinic - Information and Support
If you've been treated, when you crossed the border did you tell them you were going for medical reasons or just for a holiday? Any issues? ~Sandrajeudi

  

CCSVI at UBC MS Clinic - Information and Support  This article from the Canadian Journal of Neurological Sciences strikes an optimistic tone: "Abstract: From the earliest pathological studies the perivenular localization of the demyelination in multiple sclerosis (MS) has been observed. It has recently been suggested that obstructions to venous flow or inadequate veno...us valves in the great veins in the neck, thorax and abdomen can cause damaging backflow into the cerebral and spinal cord circulations. Paolo Zamboni and colleagues have demonstrated abnormal venous circulation in some multiple sclerosis patients using non-invasive sonography and invasive venography. Furthermore, they have obtained apparent clinical improvement or stabilization by endovascular ballooning of points of obstruction in the great veins in some, at least temporarily. If non-invasive observations by others validate their initial observations of a significantly increased prevalence of venous obstructions in MS then trials of angioplasty/stenting would be justified in selected cases in view of the biological plausibility of the concept. " ~Sandra
Patricia O'Connor  I WENT TO BOOK FOR CCSVI FOLLOW UP IN BARRIE. THEY WANT $250 for checking for restenosis since I got back from Bulgularia.
CCSVI at UBC MS Clinic - Information and Support I paid $299 for my followup scan at False Creek. ~Sandra
Newfey Rock  Hi, all my fellow msers. Today I went to see my GP for my regular b12 shot. Has always I ask him if he heard anything new in the "medical world" about ccsvi! Like always, no!... But he said thanks for reminding me! I need to call my patient to try and convince him not to go overseas for ccsvi!!! because its a waste of ...money!! So I said, "I cant wait tell the next time you see him, and he has improved". Then I added, Im going in the new year too! It was a big let down for me when he said that. It had seemed like he was starting to come on-board!
CCSVI at UBC MS Clinic - Information and Support  He always said that he did not want people to shell out thousands of dollars and he always was opposed to medical tourism. I think he took some major heat at the symposium. He said if a person had SPMS or PPMS, he would take the chance. I`d tend to agree and who`s doing these `tests`...
Darrell Watchorn  isn't it time to throw down the guantlet rather than continuously attempt to appease these neurologists who have ignored the vascular connection to MS for years answer is plain and simple anybody with obstructed veins that need to be repaired, repair the vien whether the individual has MS or doesn't have MS but quit exculding us just because we have MS!!!!!
Jackie Garraway  An update taken from False Creek Health Center FB page regarding their blood flow study...this was posted 2 hours ago -
Hello Garrett and everyone. Dr. Meakin and Dr. Chambers are carefully screening the applications. So far we have selected and contacted 20 individuals for the non-MS control group. We will soon be con...tacting individuals with MS, who match the gender and age of the control group.

Michelle Walsh
Roy Green, Corus Radio Network, is interviewing two women who are planning to go outside Canada for CCSVI treatment (Amy Gaylord-Preston, and Julie Goodwin). Saturday (Oct 16) at 2:45pm (Central).

CJOB in Winnipeg or online:http://www.roygreenshow.com/

Michelle Walsh  If you have MS and live in Canada you still have strong, determined group of MSers STILL fighting for you and we will not stop until the day MS patients are not discriminated against in having a Vascular Condition treated for our blocked veins. Set the fact we have MS aside and treat us for our Vascular condition Join ...us now to make this happen www.angioplastyforall.com
Mark Wile
I forgot to mention my experience. The doctor and nurses at the clinic were great. I had two blockages in my left neck vein. A large balloon had to be used to open it. I felt a lot of pressure. The right neck and the argos vein in chest were partially blocked-small balloon was used to open. Didn't require a stint. Dr was please with how things went.
Yvonne Andersen
‎3 months ago before angioplasty I could not drink any alcoholic beverages because my balance and my center of gravity was already making me feel as though I was drunk. Tonight is the third time in the past week that I've had a glass of wine. #1 night: I felt relaxed #2 night I was tired so felt a bit woozy #3 night: I feel relaxed and am on my way to bed to watch tv and probably crash. lol I love wine! :-0

Luciano Vascotto  I'm back from Poland. I see results as well as my PSWs have seen changes while handling me. I caught a bladder infarction and bronchitis∕pneumonia the last days I was there. I'm still recuperating. The medications they put me on is working. So many others before me had the surgery, and they are having improvements. So...me show fast improvements after the surgery, others days later, and others small improvements, but improvements nevertheless. All where sent to the hospital for observation and rest after the surgery. I just wanted you to know. I added pictures and movies of the trip on my website, www.lucvas.com. I have to go and rest now.


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Michka 16/10/2010 11:11



Gros bisous du samedi.....je ne t'oublie pas


:0091:



Handi@dy 18/10/2010 14:55



Merci Michel! :0010: