Pieces of news in the offing: NICE should be publishing their guidance for CCSVI treatment in March, there may be a couple of events coming up in April and May, and follow up news from the ISNVD conference in Orlando.
ISNVD Patient day 18th February 2012 Orlando.
The day started well with a presentation from Zivadinov who remarked on the connections between EBV, low Vit D, CCSVI, Crohns disease and Multiple Sclerosis symptoms. He repeated his opinions that CCSVI was a result of MS rather than a contributory factor to it.
Next we had the pleasure of a history lesson from Zamboni telling us the sequence that led him to investigate and identify CCSVI. In 1822 Augustus Hannover, Duke of Este and a relative of the British Royal Family was the first sufferer to describe the syndrome before it was identified. Zamboni also explained how Franz Schelling found him through the internet.
In 2002 he found a few MS patients he could examine with duplex. He found reflux, for three years he just investigated and noted abnormalities in about 55% of people with MS and none in his students who were the control group. He discovered through some post mortem studies of MS patients many problems remarking that the stenoses were not due to compression but due to malformations.
He proposed at the Royal Society of Medicine a parallel between vascular disease in the leg and the brain. MS is a complex disease and it needs a variety of diagnostic techniques.
He treated the first case in December 2006, the procedure was carried out by Dr. Galeotti, a vascular surgeon. In 2007 he put together the first CCSVI team, including Dr Salvi, a neurologist, and Dr Galeotti. Later he met Dr Dake at the Charing Cross vascular symposium.
Dr Zamboni thinks that chronic fatigue could be the biggest symptom of CCSVI.
The next speakers were Mark Haacke and Angela Lagaste who spoke about their diagnostic specialisms. Angela said that the training of sonographers was of utmost importance. Detecting the subtleties of CCSVI is not easy and depends on the way in which the probe is handled.
Treatment and Outcomes (Gerald A. Niedzwiecki). He described his facility and talked about the need for evidence of effectiveness. There was good evidence of safety of the procedure but ended his presentation with these words: The question we should be asking are we making a difference in patients symptoms short term and long term.
Treatment and Follow-up (J. Joseph Hewett, USA). He talked about the need for data when carrying out treatment, so dont just treat but measure before and after.
Bill Code thought that reduced blood flow was the main problem in CCSVI – due to problems in the anatomy, low blood pressure, stroke, thickened blood. He went on to describe the reasons why people may have thickened blood.