This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,

I just spoke to a very negative person who also has MS. I'm excited about the news of CCSVI & look forward to having the procedure done & I thought that she would be as well.

She claims that she read online that over 50% of Dr. Zamboni's patients are now the same as they were before the procedure. Is there any truth to this or is she just being negative to shoot my enthusiasm down?

Thanks Glenn

Do not worry. If you read more info about Dr. Zamboni and his patients you will find out that he was not using stents only in 1 case. He used ballooning as it was super safe. A disadvantage is that the vein might collapse again. This was the reason why was Dr. Dake using mainly stents. It keeps your vein open, it does not collapse again. This was also the reason why Dr. Simka uses stents often. This was the reason why I proffered to have a stent. Only in certain cases is ballooning enough or even better.
Erika - This was just very short and simple answer.

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

I believe (and anyone can feel free to jump in and correct me)
that a number of his patients had relapses and upon examination it was that their veins had restenoised (sp?) but that they all showed improvement

It was the restenosing of Zamboni's patients that lead Dr Dake to stents.....

For what it's worth, if their was apharma product that offered 50% of the patients improvement, I would have my wife on it in a heartbeat, as that is a vast improvement over the CRAB's that she tried and failed on

Cheers
Robin

Excellent point, Robin!!

Your friend is right when it comes to progressive patients, after 2 years they at baseline but they were no worse, this means that after 2 years none of them had progressed!! Maybe after more time they will improve. Read Marie's experience in the Regimens section..she is progressive and so is Loobie.

Stay enthusiastic!
For some, it's just too good to be true.
You're friend will be convinced in time though.

imagine that there is a restenosis of the vein, but no MS relapse... it means they are not related!

this is the most powerful proof of the validity of Zamboni's theory

Exactly.

Even if 50% of the patients went back to their original state, it just proves that the treatment method should be improved. Everything about the CCVSI being the primary factor for MS is still true.
Remember treatments in the beginning are never perfect. The open heart surgery in 70s had possible 200% mortality rate since the patient needed a healthy person to act as his heart and lung machine.

I wish to point out that it is not true that open heart surgery had the cited high mortality in the 70s. The first open heart operation was performed in 1952 using a heart and lung machine and such procedure became routine in the 70s with very low mortality.
I would invite people to avoid to post unfounded information to this Forum. We are all confused enough about the real matters and certainly we do not need false irrelevant information.
GiCi

I guess many people will have heard the phrase - Lies, Damned Lies and Statistics. I urge people not to quote statistics unless you know how to use them correctly.

Let me explain with a funny example. A 200% mortality rate after an operation/procedure indicates that people in the study died TWICE on average. That could mean that everyone in the study died twice or that half died once and half died three times during the study. OK I hope you get my message.

Let's consider a reported observation that 50% of people experience restenosis of their veins after angioplasty (from Prof Zamboni's small study ?). All this says to me - ask how long the restenosis took to happen ? Probably requiring further research.............so 2-3 years later.
Let's say the mean (average) time to restenose is 10 months (min 5 months and max 20 months). Then checking screening would be required say every 3 months and a second angioplasty performed if needed. A further study would be required to assess the better of angioplasty or stents. This would need to consider costs and risks of each procedure as well as benefits.

By the way, many healthcare professionals are inaccurate when using statistics, so why would the general public understand them. Risk is even more complex so let's not start on that....................

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Wise answers.

But it should not be limited on statistics...

We should not use words or science in which we have little or no understanding. Many persons read our posts and some could even believe it...

Be careful.

Folks, I have to say that, despite the posting of some obviously inaccurate statistics or anecdotal evidence quoted as hard numbers, in general the discussions in these threads are intelligent and well thought out - certainly more intelligent than the on-line commentary you see on news media web sites. In terms of the medical/physiological discussions and arguments put forward, while some individual postings may be off-base or even illogical, flawed thinking is usually quickly pointed out by other members. All this to say that I find the CCSVI forum a great source of information and education, especially if readers don't just cherry-pick postings or take the information presented without any critical analysis of their own.

My own experience in education tells me that there are no "dumb" questions or thoughts since these are often shared by many others in the audience, and should be thought of as opportunities to identify and correct fallacies and lapses in logical thinking. We just have to be careful to point out these errors in a respectful manner, since we all make mistakes and should treat others as we would like to be treated.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Here's the problem. We are no longer citing research on TIMS.
CCSVI began with a RESEARCH PAPER. If we do not quote medical research, we are just yacking. And that will not help anyone. It will only cloud the issue.

Let's go to the RESEARCH to see what it says regarding long term efficacy- Here is Dr. Zamboni's paper-
A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency


link to research

Gici is a cardiac surgeon who had the Liberation procedure. He knows of what he writes. Search his name as AUTHOR and read his posts. He is brilliant. He shares his wonderful, healing experience since having this procedure. Please, if you are new to this site (since the CTV documentary) spend some time reading the older posts, and all of the research linked on the sticky to learn from what has been discussed before. If you have a question, try the search function first. we're losing the focus of the CCSVI discussion, to the detriment of those wanting to learn facts.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

great post Cheer, this is the point I was trying to make in an earlier thread that I got kind of blasted for.