A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by civickiller » Thu Mar 29, 2012 1:03 pm ... l#research

UCRF Research Update
On February 18, 2012, the NUCCA procedure with a research update was presented to medical professionals and MS patients at the International Society Neurovascular Disease (ISNVD) Conference in Orlando, FL. The podium was shared with such renowned CCSVI Researchers as: Dr. Paulo Zamboni, Dr. Michael Dake, Dr. Robert Zivadinov, to mention a few.

Dr. Zamboni presented findings that CCSVI occurs in other conditions such as migraine and irritable bowel syndrome. The general consensus outcry regarded the lack of CCSVI research in the venoplasty 'Liberation' procedure. Of the estimated 10,000 patients undergoing the procedure since 2009, about 240 such patients have been included in case studies or investigational trials. A gold standard double blind clinical trial appears illusive, yet is mandatory to gain acceptance in the medical and insurance community. The inability of neurologists to accept the possibility that CCSVI actually exists underlies the lack of clinical trials. IRBs require a neurologist on the research team for any clinical trial, yet no neurologist aspires to jeopardize their career chasing perceived windmills. Dr. Jack Burks, the Neurologist Chief Medical Officer for Multiple Sclerosis Association of America, received much criticism from patients for not promoting more research into CCSVI. His solution was to have a meeting of health professionals to decide what to do.

While many patients were touting the benefits of the liberation procedure there was 20 to 30% who were interested in other approaches. The Liberation procedure does not work for everyone. There has been no study on this patient demographic thus predicting who the procedure works on or doesn't or for how long is near impossible.

A dentist from Glasgow stood up during the roundtable to describe a triage procedure addressing dental, TMJ and spinal issues (structural care) before considering Liberation. Patients who responded to structural care; TMJ, cranio-sacral work and chiropractic, did not require venoplasty or Liberation. Those patients where structural care was used prior to Liberation, success rates reported were 90% success rate over a year. It is unknown how long a patient benefits from the Liberation procedure. He urged a sensible triage procedure be used looking at structure before surgery. His advice to me was 'not to give up bashing heads with those guys (MD's); they will have to get it.'

The reality is that anecdotal information from the internet supports the theory that Upper Cervical Chiropractic helps in MS especially helping those where Liberation failed. After the NUCCA presentation, many failed liberation patients sought advice in search of a NUCCA practitioner. Many cards were passed out referring them to the NUCCA web site. There clearly is demand for NUCCA care in the MS population particularly those patients of failed Liberation procedures.

Conversations with Dr. E. Mark Haacke, who has developed a 'gold standard' imaging procedure to diagnose MS and CCSVI, led to an expressed desire to collaborate on any project once money was raised to conduct it. He is willing to brainstorm any ideas that could lead to any such collaboration. He suggested introduction of his procedure with the imaging center where the Migraine study Phase Contrast MR is being conducted in Calgary. Dr. Haacke and I were the only presenters who alluded to the possibility that CSF flow or lack thereof played a role in CCSVI and MS.

I was able to connect with Dr. Franz Schelling. He provided the MS venous flow mechanism theory and supporting research Dr. Zamboni used in developing the Liberation procedure. Dr. Zamboni awarded Dr. Schelling the ISNVD Gold Medal for his contribution to CCSVI Research. Dr. Schelling sent an MS patient to Dr. Hasick for NUCCA care. He believes the Atlas misalignment effects the veins as a mechanism, stating the CSF flow plays a minor role. Dr. Schelling considers NUCCA ideal for those patients with high upper cervical venous restrictions, where it is impractical and dangerous to use balloon venoplasty or insert stents.

The President of the CCSVI Alliance, Sharon Richardson, is very interested in NUCCA care thanks to Dr. Mike Flanagan and internet anecdotes. Two years post Liberation, she now suffers foot drop, unrelieved by standard chiropractic care (Activator). Dr. Michael Dake from Stanford performed Sharon's procedure. Her good friend, who was also liberated by Dr. Dake, reports great success in receiving NUCCA care from a certified practitioner. Her friend has not felt this well in many years, even after her Liberation procedure. As a result, Dr. Dake is very curious and shows interest in collaboration. Ms. Richardson lives in Denver where there are no certified Doctors.

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Post by HappyPoet » Thu Mar 29, 2012 6:56 pm

Thanks for posting this newsletter, civic. Have you thought about posting it on Dr. Flanagan's thread, too, since he's mentioned? Although we're still years away from consensus and acceptance, it seems like maybe, just maybe, it's all finally starting to come together for us.

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