This Is MS Multiple Sclerosis Community: Knowledge & Support

**Posted:** Fri Aug 07, 2009 4:48 pm

the plot thickens....

Collateral Circulation in CCSVI

Quote:

Abstract: A new nosologic vascular pattern that is defined by chronic cerebrospinal venous insufficiency (CCSVI) has been strongly associated with multiple sclerosis. The picture is characterized by significant obstacles of the main extracranial cerebrospinal veins, the jugular and the azygous system, and by the opening of substitute circles. The significance of collateral circle is still neglected. To the contrary, substitute circles are alternative pathways or vicarious ...

**Posted:** Thu Aug 06, 2009 10:18 pm

I sent Dr. Dake my CT scans last week, and received a call from him today. Although the radiology report that came with my CT scans concluded that everything was "within normal ranges", Dr. Dake says that he detects that the very tops of my jugulars, at the C1-C2 level, are almost completely occluded, "pancaked" in his jargon. He spent quite some time with me on the phone, and explained that while he could not ...

**Posted:** Thu Aug 06, 2009 1:00 pm

Hi All,

I've been in contact with Dr. Dake's office over the past month or so. Spoke with him once and Alex twice and faxed off a bundle of reports/letter. Will likely be scheduling soon.

As my medical history indicates cerebral venous flow & IJV issues, I'm probably a good CCSVI intervention candidate. And, clinically fatigue/cognitive fog is one of my most disabling symptoms taking me down daily. Although my walking is getting wonkier every ...

**Posted:** Thu Aug 06, 2009 6:13 am

Dear TIMS-Community!

We are very impressed by the work you have done over the last years and the achievements of TIMS for CCSVI. It’s just brilliant thank you so much guys!

As there is nothing comparable in Europe we decided to start something similar in Switzerland/Germany.

We created a platform, a website and a forum for CCSVI: http://csvi-ms.net

Currently, the page and the forum are in German because that’s ...

**Posted:** Wed Aug 05, 2009 10:06 pm

I have a bunch of questions!

Just wondering if anyone had the testing done at their home and then sent the results to Dr. Dake at Stanford? And if so what did Dr. Dake have to say? I assume he ran the tests again when you arrived at Stanford? If the tests are run by him a second time did insurance cover both?

I have a skeptical family member who thinks I should be tested ...

**Posted:** Wed Aug 05, 2009 8:51 pm

It is 8:45 pm Palo Alto - Sharon has been in her room for about 30 minutes. I spoke with her briefly - she had three stents - 2 left and 1 right (I think that is what she said---it has been a long day, so please excuse). She is groggy -- her throat hurts. Her sister Susann is with her - thanks Susan for coming all the way from Louisiana to stay by your ...

**Posted:** Wed Aug 05, 2009 6:30 pm

Hey all, I am curious what the costs are for the tests and then the procedure. Also, are you guys using insurance on this?

**Posted:** Wed Aug 05, 2009 10:37 am

Does anyone know the type of material that the stents are made of that Dr Dake uses, and if they are x-ray and MRI compatible?

**Posted:** Wed Aug 05, 2009 10:19 am

I just talked to Alex. They are already pushing into October for scheduling the testing/surgery. So Dake read my file in just a few hours after receiving it but I guess there are so many people now calling for the surgery there is a backlog!

Just wanted to give everyone a head's up.

**Posted:** Tue Aug 04, 2009 5:39 pm

Just heard from CureIous' good friend Don who tells me that he left Op Prep at 4:30pm the op will be roughly 2hrs and recovery about 3hrs. He will be getting double jugs way up high and another set by the shoulder.

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