CCSVI Practices Suboptimal but Patients Don't Mind

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI Practices Suboptimal but Patients Don't Mind

Postby Cece » Sun Jun 01, 2014 6:35 am

http://www.medpagetoday.com/MeetingCove ... RIMS/46082

Some research on surveys done of Canadian patients who had the CCSVI procedure done via medical tourism. The data is primarily from 2010-2011 so it may be out of date with current standards. Still interesting.
Curiously, none had gone to Italy – even though Zamboni and his proteges there have established busy venoplasty programs for MS patients.

Well, that casts Zamboni in a poor light. No one has gone there because everything he has done is research-oriented, not medical tourism.
From 80% to 90% of patients received only venoplasty without stenting, except those treated in Poland, where stents were placed in more than 40% of patients.
Poland, where there were three clinics patients had used, stood out as having the most extensive record of follow-up care, with about 80% of patients reporting having received something in both post-procedural therapy and evaluation.

Because patients had to return to Poland to deal with complications of stents or loss of improvements? Again, a lot of the data is from 2010, the first year the procedure was available and a year when a lot of knowledge was yet to be gained on how to optimally do the procedure.
Costs did vary, and, again, the U.S. was in the low to middle range.

Go USA. The US providers entered the ring many months after some international providers did. The US providers entered at a time when prices were naturally coming down because of supply and demand.
All but two of the 124 patients said it had been successful -- 79% reporting no complications and 19% saying it was "successful with some trouble."

And, rating their overall satisfaction on a scale of 1 (worst) to 10 (best), the median was 7, and three-quarters of respondents rated it 5 or higher.
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Re: CCSVI Practices Suboptimal but Patients Don't Mind

Postby cheerleader » Mon Jun 02, 2014 8:23 am

More wonderful disinformation from the Consortium of MS Clinics. An abstract which is not published and a news story full of lies.

For those who may not remember, CMSC was alleged to be a money laundering group for pharma. They alledgedly passed on contributions from pharma to doctors who prescribed MS drugs to their patients. Here's more on that story from CBS busines news.

Even though the Department of Justice caught Serono Labs operating what its own executives allegedly described as a "money laundering thing" to funnel kickbacks to high-prescribing doctors, no individual managers at the company will face charges or legal action. The company will pay a $44.3 million fine to settle the case, which Daniel R. Levinson, Inspector General of the Department of Health and Human Services, believes will deter other pharmaceutical execs from bribing physicians to write prescriptions.

Amato's lawsuit, which led to the settlement, is unusually detailed. It contains copies of the checks that were allegedly laundered through the Consortium of Multiple Sclerosis Clinics and Dr. Alan Bowling's Rocky Mountain Medical Center, and it alleges that Bowling himself testified in a deposition that he received the checks.

http://www.cbsnews.com/news/how-ms-drug ... -going-on/

Serono got a slap on the wrist, and the CMSC continues to focus all of its efforts on drugs for MS. Nothing on lifestyle, exercise, nutrition, physical therapy, UV rays and Vit. D or the vasculature. It's criminal.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI Practices Suboptimal but Patients Don't Mind

Postby Cece » Mon Jun 02, 2014 11:05 am

I had forgotten that. The seamier side of things gets unpleasant fast. There is a lot of money in MS.
All but two of the 124 patients said it had been successful -- 79% reporting no complications and 19% saying it was "successful with some trouble."

And, rating their overall satisfaction on a scale of 1 (worst) to 10 (best), the median was 7, and three-quarters of respondents rated it 5 or higher.

This is very favorable, as long as you consider MS patients to be able to discern when something has helped and been successful or not, which I do. All but 2 out of 124 patients considered the procedure to be a success.
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Re: CCSVI Practices Suboptimal but Patients Don't Mind

Postby 1eye » Mon Jun 09, 2014 2:06 pm

disinformation from the Consortium of MS Clinics


That is not so innocuous as it sounds. It seems to be commonly accepted practice for doctors to actively fight a treatment which has a decent success rate, in the absence of other options. This is a treatment which can save lives, and instead of being offered with diet and exercise as an early treatment which may reduce and prevent suffering if done early, it is being overtly opposed by vocal, so-called doctors. Leaving aside the ones who take bribes, why do other doctors, insurance companies, law-makers, tolerate this greedy, selfish, illicit and immoral behaviour? These pseudo-doctors are casting a very ugly shadow, and making a lot of innocent people look very shady. History and the truth will win out in the end, but a lot of people are going to look really bad, and it won't be a stain dry-cleaners can fix.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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