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
CCSVI treatment available in the U.S.!
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fiddler
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- Location: Fredericton, Canada
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Training, experience and experience
Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
My blog: www.my-darn-ms.blogspot.com
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
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
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
All Quiet
I received a reply from Dr. Siskin when I forwarded my insurance information to him by email. Dated May 18th:
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.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
Re: All Quiet
Nice!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.
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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thornyrose76
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thornyrose76
- Family Elder
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- Joined: Mon Nov 23, 2009 3:00 pm
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.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.
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greenandchic
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- Location: Portland, Oregon
I hear you, though I'm not sure how much more cheaper it will be since I am on the west coast.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.
It would be a matter if my insurance would cover or not. If not, then I would have to go out of the country.
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thornyrose76
- Family Elder
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US Treatment
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?
So this should be cheaper?
Doppler vs Venogram
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:
And my response...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=B3jIY4h3 ... ure=autofb
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?