WOW!I have received such an overwhelming positive response to CBC's The National report on my journey to Poland for CCSVI treatment. All morning since 8AM I have been answering the phone, emails and Face Book posts. It's just about 11am now and I'm mostly caught up now. I want to thank everyone for their support before and after my treatment and especially CBC's Dave McIntosh and Kelly Crowe for their exceptionally professional journalism.
It is my hope that this show will spread the CCSVI concept even further to interventional radiologists and other medical professionals and spark an interest so that they will want to look into the viability of offering the procedures in the not too distant future. I am hoping insurance companies were watching and understood the financial implications of CCSVI treatment vs. ineffective, expensive drugs. I also wish that members of our health care system were watching and were able to digest the truth about CCSVI treatment. I hope that by showing my entire procedure on TV a lot of the fear and trepidation surrounding CCSVI treatment will be lessened or eliminated.
With all that said I am happy to say that the CCSVI Revolution is in full swing in Canada. Our local group,"CCSVI Calgary" held a protest at the Calgary MS Clinic on April 9 and we received a lot of media attention. On May 5th many CCSVI advocacy groups will be holding marches and rallys across Canada to show their support for CCSVI and their disdain for the ignorant naysaying by our MS Societies, provincial health care and government officials.
Coincidentally, May 5th is celebrated in Mexico as "Cinco de Mayo".(Spanish for "fifth of May") The holiday commemorates the Mexican army's unlikely victory over French forces at the Battle of Puebla on May 5, 1862, under the leadership of Mexican General Ignacio Zaragoza Seguín. We too are in a battle for our rights to have this promising treatment for MS in our own country.
Please sign my GLOBAL PETITION that will be sent to Canadian Provincial Health Care and the Health Minister. This is a "global" petition so anyone from anywhere can sign it. You DO NOT have to donate any money. Just log out at that point. Thank you.
For more information on how to join or start a group for the march in your area go to msliberation.ca
To join our Calgary CCSVI group CLICK HERE
For CCSVI tee shirts CLICK HERE http://ccsviworldwidevictory.com/STORE.aspx
More Tee Shirts from CCSVI UBC
Just for fun add an MS HOPE sticker to your FB profile pic. CLICK HERE
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Argh...I just bought some of the other shirtsnthrough Cafe Press.......these are alot less expensive...and are from here in BC.....shoot.....Oh well....I will be wearing them at the Rally on March 5th in Vancouver!
ReplyDeleteDo you know if there will be a rally on March 5th in Calgary?
ReplyDeletehere is a link to our FB group
ReplyDeletehttp://www.facebook.com/tos.php?api_key=9aaadc859a1c4c4ea7ef625c9b0c82ab&v=1.0&canvas#!/pages/Calgary-AB/CCSVI-Calgary/350162437829?ref=nf
Angela, where is the rally in Vancouver on March 5th?
ReplyDeleteHi, I read on your previous blog that you tried LDN- I can not find a doctor who will give me that for MS- Is there any way you could email me the name? I would really appreciate it
ReplyDeleteIt is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
ReplyDeleteCCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.
There is a difference between responsible reporting and what Melissa Martin chose to write about the CCSVI Clinic in this article. She was in possession of factual information and documents that put the CCSVI Clinic in a favorable light but chose to withhold the information she received from the physicains and researchers at CCSVI Clinic that would have conflicted with her agenda to smear our reputation in order to sensationalize her story. At no time did anyone from the CCSVI Clinic pressure patients into going to India for the Liberation Procedure. She should have considered that the one single person who made that claim clearly had her own agenda because she was disheartened by her 'borderline' results. We simply provide information to people about our enhanced hospital stay and aftercare program should a patient decide to have the procedure. You can't pressure someone to make an important decision about their health and all of our literature clearly states that. These MS patients are more knowledgeable about the CCSVI condition and about the options for treatment than most physicians are. To suggest that they can be pressured into a decision to have the procedure done in India is ludicrous. Patients who have signed up to be part of our open-ended study on the safety and efficacy of an enhanced aftercare protocol to reduce the rate of re-stenosis versus having the procedure on an outpatient basis (which may be contributing to long term failure of the procedure) have done so to ensure that they are getting the best care possible and because they want to be part of the important work we are doing for MS patients. http://www.ccsviclinic.ca/
ReplyDeleteCCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
ReplyDeleteDr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.
After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
ReplyDeleteOther recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838