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

Training, experience and experience

Postby fiddler » Wed May 19, 2010 6:34 pm

Folks, I think it was Dr. Sclafani who said that he was getting a lower percentage than Zamboni and Simka, until he took some training from Zamboni and realized he was missing some stenoses (maybe primarily those in the azygous vein?) - so maybe it's just a matter of a little more specialized training and experience.
...Ted
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Postby Cece » Wed May 19, 2010 6:44 pm

From what I understand, DrSclafani was finding CCSVI in 100% of MS patients, but he was not finding 100% of the CCSVI...particularly in the azygous, as mentioned...yes, it makes sense that the sample size is small and Siskin is just beginning with this...even if four got missed (or genuinely did not have ccsvi), that's eleven that got treated, and many more on the list to come!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Liber8 » Thu May 20, 2010 6:26 am

I also thought Dr S was finding 100% CCSVI in his patients that were coming to see him
RR DX 1993
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Postby bestadmom » Thu May 20, 2010 6:35 am

Liber8,

Dr. Sclafani has found 100% CCSVI in his patients. It was azygos involvement that wasn't in line with Zamboni's findings.
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Postby Liber8 » Fri May 21, 2010 7:33 am

Any new info from CommunityCare Physicians? It sounded great with poss ins coverage. Anyone get a scheduled date?

On another note:

Iwrote an email to AMEDS yesterday and got this in return yesterday.


Dear Sir



At the present time we set up dates for June and July for our patients registered

In January and February .Your February registration gives us clearly preliminary date for

July –August .We will confirm precise date by email and phone. You may always contact us

Directly for details . We are doing our best to shorten waiting time for our patients.





With regards





Jarosław Troch

President





AMEDS Centrum Sp. z o.o.
Al. Ujazdowskie 41
00-540 Warszawa, Poland
mobile: +48 512 077 457
tel.: +48 (22) 755 9315
fax: +48 (22) 319 5680
email: j.troch@ameds.pl

www: www.ameds.pl
RR DX 1993
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All Quiet

Postby FlashHack » Fri May 21, 2010 7:48 am

I received a reply from Dr. Siskin when I forwarded my insurance information to him by email. Dated May 18th:
We are working on some dates over the next few days. As I mentioned, be patient with us as we gets these dates for the hospital together. We will be in touch once we have that information together.

Gary Siskin
Sounds like he is trying to work with the hospital on dates he can reserve the IR OR. I think he has said the word "patient" about ten times in my limited interactions with him. That is certainly what we are all trying to be, isn't it. A patient. :wink:
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Re: All Quiet

Postby BooBear » Fri May 21, 2010 9:27 am

FlashHack wrote: I think he has said the word "patient" about ten times in my limited interactions with him. That is certainly what we are all trying to be, isn't it. A patient. :wink:


Nice!

I am still waiting for my call from the doctors at this office, though they have my info. I am sure they are innundated with requests.

Hopefully I will hear from them soon!

Glad to hear that things are moving forward for you FlashHack!
Three veins angioplastied.  One renewed life.  
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Postby thornyrose76 » Fri May 21, 2010 1:40 pm

jay123 wrote:They are treating people there, they are excellent! I have had both angio and then a stent placed by them.

In addition to this they are GETTING IRB REVIEW FOR SOME FORMAL STUDIES.


HI

What is the cost for everything??
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Postby thornyrose76 » Fri May 21, 2010 1:44 pm

Disregard the above, I just found the little blurb that outlines $$$
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Postby SandyK » Fri May 21, 2010 1:52 pm

Shoot. I can still do it cheaper out of country including airfare for 2! It's a shame I can't afford to give my money to a local doctor.
Diagnosed 1994, Self EDSS is 6.5
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Postby Zeureka » Fri May 21, 2010 4:26 pm

bestadmom wrote:Liber8,

Dr. Sclafani has found 100% CCSVI in his patients. It was azygos involvement that wasn't in line with Zamboni's findings.
Yep, in my view if they got such a lower percentage also likely they might not always find all the vein defects, for example in the azygous seems valve problems are difficult to find...according to Dr Sclafani a lot of experience and IVUS required - but not to say: if they find sthg, great you have more treatment possibilities for you in the US! And they may also learn with experience.
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Postby greenandchic » Fri May 21, 2010 4:49 pm

SandyK wrote:Shoot. I can still do it cheaper out of country including airfare for 2! It's a shame I can't afford to give my money to a local doctor.


I hear you, though I'm not sure how much more cheaper it will be since I am on the west coast.

It would be a matter if my insurance would cover or not. If not, then I would have to go out of the country. 8O
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Postby thornyrose76 » Fri May 21, 2010 6:37 pm

Jenb wrote:Looks like beginning of August for me...
They called today with a date in July but to soon for me , still need passport and $$. :D


What is the wait for passport? I'm a fellow Canadian (HI!!!!)-stuck in Winnipeg actually. But being serious, is it a few weeks or months?
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US Treatment

Postby bmk1234 » Fri May 21, 2010 7:51 pm

For those of us traveling distances, Dr. Siskin has told me he will do the gold standard and skip the diagnostic tests.

So this should be cheaper?
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Doppler vs Venogram

Postby FlashHack » Fri May 21, 2010 8:07 pm

On venogram vs. doppler Nunzio pointed out some of the most recent information coming from Italy. Apparently doppler reveals some problems that actually get missed by venograms. Check out his post on the Sclafani thread:
Nunzio wrote:Dear Dr. Sclafani,
I figured out why they did not find a problem in my left jugular vein I thought had a valve problem.
Dr. Galeotti explain this well: Valve cusps problems are easily identifiable by doppler but can be missed by contrast venography. Still those valve need to be dilated. See the following video starting at min 1.30.
Thanks
Nunzio
http://www.youtube.com/watch?v=B3jIY4h3kZo&feature=autofb

And my response...
FlashHack wrote:Very interesting. Dr. Siskin mentioned to me about finding people where CCSVI was detected by doppler US but not seen on the venogram. He spoke of it as a indication of how unreliable the doppler was, but this would seem to indicate that the venogram was the inaccurate one. Could this be what he encountered?
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