Dr. Zamboni's long term results

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

Dr. Zamboni's long term results

Postby 81Charger » Fri Jan 08, 2010 9:44 am

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
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Re: Dr. Zamboni's long term results

Postby ErikaSlovakia » Fri Jan 08, 2010 9:54 am

81Charger wrote: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.
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
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Postby bigfoot14 » Fri Jan 08, 2010 9:54 am

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
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Postby JoyIsMyStrength » Fri Jan 08, 2010 10:03 am

Excellent point, Robin!!
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Postby LR1234 » Fri Jan 08, 2010 10:24 am

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.
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Postby Vonna » Fri Jan 08, 2010 12:22 pm

Stay enthusiastic!
For some, it's just too good to be true.
You're friend will be convinced in time though.
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Postby thisisalex » Fri Jan 08, 2010 12:36 pm

bigfoot14 wrote: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


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 :)
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Postby ndwannabe » Fri Jan 08, 2010 10:56 pm

thisisalex wrote:
bigfoot14 wrote: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


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.
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Postby sbr487 » Sat Jan 09, 2010 3:54 am

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.
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cardiac surgery

Postby GiCi » Sat Jan 09, 2010 5:58 am

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.
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Lies, Damned Lies and Statistics

Postby MarkW » Sat Jan 09, 2010 6:43 am

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
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
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Postby Algis » Sat Jan 09, 2010 7:14 am

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.
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Statistics

Postby fiddler » Sat Jan 09, 2010 9:24 am

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
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby cheerleader » Sat Jan 09, 2010 9:38 am

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

Results: Outpatient endovascular treatment of CCSVI was feasible, with a minor and negligible complication rate.
Postoperative venous pressure was significantly lower in the IJVs and AZY (P < .001). The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%; odds ratio, 16; 95% confidence interval, 3.5-72.5; P < .0001). CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad􏰥 lesions from 50% to 12% (P < .0001). The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008) but not in PP or SP. Physical QOL improved significantly in RR (P < .01) and in PP patients (P < .03), with a positive trend in SP. Mental QOL showed significant improvement in RR (P < .003) and in PP (P < .01), but not in SP.
Conclusions: PTA of venous strictures in patients with CCSVI is safe, and especially in patients with RR, the clinical course positively influenced clinical and QOL parameters of the associated MS compared with the preoperative assessment. Restenosis rates are elevated in the IJVs but very promising in the AZY, suggesting the need to improve endovascular
techniques in the former. The results of this pilot study warrant a subsequent randomized control study. ( J Vasc Surg 2009;50:1348-58.)

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jay123 » Sat Jan 09, 2010 9:47 am

cheerleader wrote: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

Results: Outpatient endovascular treatment of CCSVI was feasible, with a minor and negligible complication rate.
Postoperative venous pressure was significantly lower in the IJVs and AZY (P < .001). The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%; odds ratio, 16; 95% confidence interval, 3.5-72.5; P < .0001). CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad􏰥 lesions from 50% to 12% (P < .0001). The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008) but not in PP or SP. Physical QOL improved significantly in RR (P < .01) and in PP patients (P < .03), with a positive trend in SP. Mental QOL showed significant improvement in RR (P < .003) and in PP (P < .01), but not in SP.
Conclusions: PTA of venous strictures in patients with CCSVI is safe, and especially in patients with RR, the clinical course positively influenced clinical and QOL parameters of the associated MS compared with the preoperative assessment. Restenosis rates are elevated in the IJVs but very promising in the AZY, suggesting the need to improve endovascular
techniques in the former. The results of this pilot study warrant a subsequent randomized control study. ( J Vasc Surg 2009;50:1348-58.)

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


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