Our Federal Government has decided to sit on its hands while MS patients suffer and die despite overwhelming anecdotal and clinical evidence that demonstrates that unblocking our neck veins has definite therapeutic value. Leona Aglukkaq is blindly listening to Dr. Beaudets recommendations to wait. Months ago when Dr. Zivadinov and Dr. Weinstock-Guttman of Buffalos BNAC came to Calgary for a CCSVI presentation on the research they were currently working on, it became all too clear to me that if we wait for the research to be completed, Canada will not be performing angioplasty on MS patients for another decade.
Even if Canadian researchers got the green light from our Government to go ahead with CCSVI studies, I wonder what the research would entail. If they endeavored to duplicate the already ongoing work by Buffalo it would be a waste of our money. The best study that I imagine Canada performing would be to compile a data base of all the MS patients, (which our MS clinics already have), and by working with the angioplasty Dr.s abroad, compile before and after data on each patient. This type of study would be extremely cost effective as the preliminary medical history of each MS patient is already documented. The biggest hurdle would be to get our neurologists to work with the interventional radiologists and vascular surgeons by sharing information.
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I agree with you, Ginger, that Canada is already behind in research and that they will not be able to catch up with the other countries. Your idea for a compilation of results from CCSVI/angioplasty MS patients and their histories would be an asset and a great starting point for Canada. We have enough MS stricken persons to create a great study.
ReplyDeleteI think there needs to be some collaboration from all the different doctors and the government. The MS Society is no longer a key player. Our MS is not going away, and we will need constant monitoring to make sure our circulation system is working properly. The voice of the MS patients will only grow stronger until something is done.
I've got a private appointment for a scan for CCSVI coming up in November.
ReplyDeleteUnless it has already been suggested, why don't WE set up a research data base?
To record results, looking at some agreed criteria, this could be a truly global study, from a "MS customers" point of view.
Rudy
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced surgeons in Poland & Albany. As more people receive the therapy there is growing concern amongst patients that http://www.ccsviclinic.ca/?p=765 the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital within a day.
ReplyDeleteIt should be mentioned that our research is under much scrutiny & attack from elements that are trying to control the industry & the dialogue.We would ask you to have the independence of thought to see through their campaign of deceit. http://www.ccsviclinic.ca/?p=783Regular research updates will be published on the Clinic website. Questions about participation may be directed toward the Clinic administration at 888-419-6855.
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