This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Fri May 24, 2013 1:09 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 860 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6, 7, 8 ... 58  Next
Author Message
PostPosted: Wed May 19, 2010 6:34 pm 
Offline
Family Elder
User avatar

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 398
Location: Fredericton, Canada
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

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


Top
 Profile  
 
 Post subject:
PostPosted: Wed May 19, 2010 6:44 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8508
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


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 20, 2010 6:26 am 
Offline
Family Member
User avatar

Joined: Sun Feb 28, 2010 4:00 pm
Posts: 57
Location: 10,000 Lakes
I also thought Dr S was finding 100% CCSVI in his patients that were coming to see him

_________________
RR DX 1993


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 20, 2010 6:35 am 
Offline
Family Elder
User avatar

Joined: Mon May 18, 2009 3:00 pm
Posts: 722
Location: CT
Liber8,

Dr. Sclafani has found 100% CCSVI in his patients. It was azygos involvement that wasn't in line with Zamboni's findings.


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 7:33 am 
Offline
Family Member
User avatar

Joined: Sun Feb 28, 2010 4:00 pm
Posts: 57
Location: 10,000 Lakes
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


Top
 Profile  
 
 Post subject: All Quiet
PostPosted: Fri May 21, 2010 7:48 am 
Offline
Family Elder
User avatar

Joined: Wed Jan 20, 2010 4:00 pm
Posts: 169
Location: Portland, OR
I received a reply from Dr. Siskin when I forwarded my insurance information to him by email. Dated May 18th:
Quote:
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:


Top
 Profile  
 
 Post subject: Re: All Quiet
PostPosted: Fri May 21, 2010 9:27 am 
Offline
Family Elder
User avatar

Joined: Mon Mar 01, 2010 4:00 pm
Posts: 336
Location: Chicagoland
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.  


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 1:40 pm 
Offline
Family Elder
User avatar

Joined: Mon Nov 23, 2009 4:00 pm
Posts: 462
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??


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 1:44 pm 
Offline
Family Elder
User avatar

Joined: Mon Nov 23, 2009 4:00 pm
Posts: 462
Disregard the above, I just found the little blurb that outlines $$$


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 1:52 pm 
Offline
Family Elder
User avatar

Joined: Wed Oct 14, 2009 3:00 pm
Posts: 221
Location: WA
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


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 4:26 pm 
Offline
Family Elder
User avatar

Joined: Thu Jan 14, 2010 4:00 pm
Posts: 481
Location: Italy
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.


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 4:49 pm 
Offline
Family Member
User avatar

Joined: Sat Dec 12, 2009 4:00 pm
Posts: 45
Location: Portland, Oregon
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


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 21, 2010 6:37 pm 
Offline
Family Elder
User avatar

Joined: Mon Nov 23, 2009 4:00 pm
Posts: 462
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?


Top
 Profile  
 
 Post subject: US Treatment
PostPosted: Fri May 21, 2010 7:51 pm 
Offline
Family Elder
User avatar

Joined: Sun Jan 31, 2010 4:00 pm
Posts: 101
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?


Top
 Profile  
 
 Post subject: Doppler vs Venogram
PostPosted: Fri May 21, 2010 8:07 pm 
Offline
Family Elder
User avatar

Joined: Wed Jan 20, 2010 4:00 pm
Posts: 169
Location: Portland, OR
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?


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 860 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6, 7, 8 ... 58  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Atlas/TMJ treatment with Dr M Amir to negate CCSVI treatment

CindyCB

5

2664

Thu Oct 04, 2012 6:49 am

TheCatsWhiskers View the latest post

There are no new unread posts for this topic. CCSVI treatment and migraine..any difference after treatment

Brightspot

2

1579

Sun Jan 17, 2010 11:35 am

magoo View the latest post

There are no new unread posts for this topic. What happens after CCSVI treatment?

Rosegirl

1

987

Wed Mar 10, 2010 2:42 pm

esta View the latest post

There are no new unread posts for this topic. WHERE IS CCSVI treatment being done?

Villagemaid

3

1048

Mon Apr 19, 2010 5:57 pm

mmcc View the latest post

There are no new unread posts for this topic. Where to go for CCSVI treatment?

LauraV

2

1033

Fri Jul 02, 2010 11:39 am

BadCopy View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: