Letter from the Director
Dr. Robert Zivadinov, MD, PhD
Director, Buffalo Neuroimaging Analysis Center
February 4, 2010
My Friends,
I write to you today as our researchers are completing their analysis of the first of several studies on chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis (MS). The preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues and the wordwide press. The study itself continues into the second phase.
Good news! We will begin to offer CCSVI Diagnostic Venous Testing beginning this month. Patients may self-refer or be referred by their neurologist. We have also taken the first step towards treatment of CCSVI, a 6-month study titled, Controlled Randomized Endovascular Therapy (CRET). It will evaluate the safety and preliminary efficacy of therapeutic angioplasty. It is important to understand, however, that we cannot recommend endovascular treatment before we fully understand the safety of any approach we may propose. Thus, we intend to perform double-blind controlled trials using a treatment different from those used by either Prof. Zamboni or Prof. Michael Dake of Stanford. Many thanks to everyone who has been following our research, to those who participated in our first study and those interested in phase 2 of the CTEVD study.
Here is the link to the whole news letter with lots more information.
http://bnac.net/newsletter/BNAC_Newsletter_02-04-2010.pdf
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Please send only one inquiry to one of the email addresses listed below. Sending multiple emails hinders us in responding to those interested in these studies or testing.
If you have previously contacted ctevd@bnac.net or already filled out the CTEVD questionnaire, please be patient, we will contact you as soon as we can. You do not need to complete another questionnaire for this study. However, if you are interested in one of the other studies, you must email them directly and follow the application instructions. Please check the web site for updates regarding the CTEVD study.
If you would like more information on self referral testing packages please contact ccsvi.venoustesting@bnac.net.
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this is exciting...since my Ms isn't severe it makes me wonder if it is a vascular problem...
ReplyDeletedizziness, light headed, tingles, stiff joints, headaches, fatigue, all of which I have...plus whenever I start to exercise hard my left side tingles and feels weird...in my head it has to be something to do with blood flow.
I am glad you are pro-active about this. I haven't been. I am leaning on your information right now. Maybe when the baby is born I will take more aggressive steps.
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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