Cece wrote:
where oh where is Dr.Sclafani today?
In case anyone missed this:
GiCi wrote:
You all will be pleased to know that Dr Sclafani and myself have been invited to take part in a debate on CCSVI, which will be held in Belfast as a satellite symposium in a conference of Vascular Surgery on the 24th of September. We will argue in favour of the liberation procedure, while two well known neurologists will argue against it. The debate will not change the world, but I hope that it may open some eyes.
So who'd'ya think won, our guys or the neurologists?
ok let me share the discussions that occurred in Belfast it was quite a challenge and I am not sure there was a winner.
There were four speakers. Dr. Goianfranco Campalani, an MS patient who is a cardiothoracic surgeon at the Royal Victgoria was first.
Then TWO neurologists spoke back to back. Dr Stanley Hawkins is the senior neurologist in Belfast and is a consulting neurologist in the Royal Victoria Hospital, Belfast City Hospital and the Causeway hospitals. He is a well written MS neurologist. He was fol.owed by Martin Duddy who was also a consulting neuorogist with special interest in MS. He is a busy clinician. Finally yours truly got to speak
Dr Campalani gave a detailed account of his disease and the effects of balloon angioplasty on his life. It was the common description of progressive deterioration to the point of dysfunction and his dramatic improvements after balloon angioplasty. Followed again by recurrence, repeated angiopastly and a satisfied patient. Dr Campalani passionately spoke in favor of the procedure as a patient. He acknowledged that existing disease was not likely to be totally reversed and accepted his residual symptoms. He argued in support of universal availability of the liberation procedure.
Dr Hawkins then proceeded to state that neurologists understood this disease better than most. Perhaps in a wry joke, he showed a line illatration of the brain and spine and then insisted on repeating this in case it was too complicated for the audience. I could not tell whether he was insulting or just making a bad joke. He then reviewed the natural ihistory of MS, indicated that it took a long time to reach SPMS. He showed various tables indicating the waxing and waining course of MS, indicating that long periods of remision occured without treatment, that placebo was a real problem for assessing research, He pointed out that quality of life scores were not really very scientific and then stated that Zamboni's paper in JVS would not have been published in a neurology journal for its statistical deficiencies.
I had a lot of difficulty with Dr Duddy's presentation. He seemed to be mocking the entire subject as irrelevant. He kept pointing out things that proponents put forth and kept snickering and laughing about it. I could not tell whether he was mocking in a conptemptuous way.
he then reviewed samboni's papers, deconstrucing them as poor science with suboptimal outcomes abd crappy data. He discounted Zamboni's work because he had 100% correlation in ultrasound. he dsmissed zivadinov's confirmation because zivadinov know zamboni so "we couldnt really accept that, could we?" biased and all.
He showed some placebo studies and argued that the improvements seen by zamboni were less than those improvements reported for placebo trials. Interesting how he brought up the "unacceptable" zamboni data and then used that data to prove his point.
He then brought out the big hitters, the kahn editorial (lots of good data there) and the doepp paper as proof positive that zamboni was wrong.
Finally the commercial enterprises that are performing liberation were charlatons. That a 7,000 pound expense for this procedure was a real hardship. I wondered what he thought of the expense of some of the DMDs
Finally I had an opportunity to speako
I made four major points
1. that ccsvi has many causes although ms was the most common cause
2. that other causes of ccsvi are treated. I asked why MS patients could notgg be treated.
3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins
Finally I argued that the patients were not satisfied with the status quo. That they were intelligent and could make up their minds about whether it was worth their while to seek treatment. I warned the neurologists that a paternalistic attitude would one day bit them in the ass.
a vote was taken at the end and most did not commit one way or the other. the surgeons told me that their minds were opened by the debate.
I spoke to dr hawkins at the evening's dinner. I reiterated my need for collaboration between neurologists and interventionalists. I asked him how he would propose that i create that collaboration. He didnt give me a satisfying answer.
was the trip worth it? I thought it was . i think minds were opened a bit. Lets not give up hope about neurologist partnerrs. We really do need them
Hey......I am jet lagged beyond belief....have a good evening.
s
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