Total Number Liberated

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

Total Number Liberated

Postby berriesarenice » Wed Mar 17, 2010 1:28 pm

For the sake of casual conversations, when I am throwing around CCSVI statistics with friends and family, does anyone have the approximate breakdown of:

Total number of people that have had veins opened (Zamboni, Simka, Dake, Jordan, India, Greece, secret IR's, others I'm missing)?

Number who received stents?

Number who received balloon?

Again, I'm just looking for ballpark if anyone has already done a rough calculation...

Much thanks
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Re: Total Number Liberated

Postby frodo » Wed Mar 17, 2010 2:24 pm

berriesarenice wrote:For the sake of casual conversations, when I am throwing around CCSVI statistics with friends and family, does anyone have the approximate breakdown of:

Total number of people that have had veins opened (Zamboni, Simka, Dake, Jordan, India, Greece, secret IR's, others I'm missing)?

Number who received stents?

Number who received balloon?

Again, I'm just looking for ballpark if anyone has already done a rough calculation...

Much thanks


It is difficult to know, but I would say that Simka is the one that has done the most, and it has been working since October, therefore around 6 months now. Counting 20 labor days each month, that makes 120 persons. That would be an upper limit.

The others, as far as I know, have done much less. I would say that 200 could be a reasonable approach, including people in trials.
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Postby Sotiris » Wed Mar 17, 2010 11:30 pm

Prof. Zamboni: 120 op, balloon angioplasty, 2 or 3 stents (only in azygos)
Dr. Simka: (acc. to the presentation of 7/2/2010) about 90 op.
•No obvious pathology found –3 patients (3%)
•Only balloon angioplasty –57 patients (63%) (31 patients: one IJV; 26 patients: both IJVs)
•Only stenting –19 patients (21%) (18 patients: one IJV; 1 patient: both IJVs)
•Stenting in one IJV and balloon angioplasty of the other vein –12 patients (13%)
Dr. Dake:
About 50 op, mainly stents
Jordan:
Few venograms and venoplasty (20 pwMS tested)
India:
>=1 (better to ask Rehansayeed)
Greece:
1 op, balloon ang.
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Postby sbr487 » Wed Mar 17, 2010 11:50 pm

I would put around 5 for India.
Don't forget Aus, Serbia, Germany, US :- Scaflani, Georgetown, Mehta (?)
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Postby IbRiz » Wed Mar 17, 2010 11:50 pm

Dr Vogel in Germany has done some pwms, and so has dr Sclafani, USA.

So far 2 patients from Denmark had the operation (one with dr Vogel, and one with dr Sclafani - as far as I know, from http://msforum.dk)

Christian[/url]
Last edited by IbRiz on Thu Mar 18, 2010 3:18 am, edited 1 time in total.
RRMS Dx'd 2009
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Postby nono » Thu Mar 18, 2010 3:07 am

I was the 4 th patient with dr. Vogl , and many Dutch are scheduled I only know of 1 German , In Poland there are 4 Dutch patients treated , and today
2 more (I hope) and off course there are some folks who don't write on the internet.
Vogl- only balloon
Simka- 2 stented 2 ballooned

Those are the results from Holland.
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Postby tipsyturtle » Thu Mar 18, 2010 7:37 am

Hi All,
Dr. Simka's stats can be found here:
http://z3.frix.pl/frix104/efb037ce00203 ... csvi-1.pdf

The euromedic site indicated that on Feb 18th they did the 100th procedure.

I think New York can also be listed.

('8O')
Katowice, April 7/8
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Postby lilaclomax » Thu Mar 18, 2010 9:37 am

It seems that the Euromedic team in Poland have 6 patients in per day, 3 - 4 days a week... There were 6 on Tuesday, 6 yesterday including myself and 6 people coming in this morning for treatment plus we met more patients at the eye clinic who are here for the procedure this week.
A conservative figure for Poland is currently 80+ patients a month.
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Postby Lelo » Thu Mar 18, 2010 12:14 pm

My procedure the 11th of March, was the 138th Dr Ludzyka "Liberated".
:D :D :D
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Postby ozarkcanoer » Thu Mar 18, 2010 1:03 pm

Lelo,

WOW, 138 !!!!! That is good to hear. I hope Dr Simka and Dr Ludyga are keeping good records on their patients and will publish a paper on their experiences with treating CCSVI.

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Postby lucky125 » Thu Mar 18, 2010 2:56 pm

Add me to the list!
Georgetown: 1 balloon angioplasty!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby lilaclomax » Thu Mar 18, 2010 3:42 pm

Lelo wrote:My procedure the 11th of March, was the 138th Dr Ludzyka "Liberated".
:D :D :D


Great news, I was also treated by Dr Ludgya :D Although the next two patients treated yesterday were liberated by the second surgeon - I wonder how many he has liberated??
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Postby Lelo » Fri Mar 19, 2010 2:54 am

Hi, do you mean the other one with glasses, between 30-40 years old. In fact there were two surgeons on me, one anastatic dr and two nurses. Five together. The procedure itself, was my most peaceful experience in Poland.
:D :D :D
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Postby Inge67 » Fri Mar 19, 2010 5:28 am

So it all ads up to ????

I am lost guys! How can we monitor this more structured?

Make it a sticky?

Wrap up after ever 2nd page?

So far I have this:

Zamboni 120
Simka 138
Dake 50
Sclafani 2
Georgetown 1
Vogl 6 (probably more, still must have the German votes)
India 5
Jordan 7
Greece 1

Total # 330

Am I correct? Please help!

Questions which haunts me is:
have all the ops led to improvements or standstill of progression?
has symptoms returned after a certain period of time?

Should we make an accessible excel file with liberation treatment results?
Hope to hear you all!

Inge
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Postby JSTCD » Fri Mar 19, 2010 7:40 am

That's a lot of people that hav had the procedure.
Is there any word on how many post procedure relapses?

It would be really cool to get some sort of average person-months between relapses for those who have had this done.

In reading through this site, anectodally, there seams to be a LOT of non-relapse person/months which would be unexpected if it didn't work.

I'm sure studies on this will eventually be released, but it'd be really cool to get this stat figured out here. Even cooler if we could get the before procedure stat worked out too.
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