FAQs from CCSVI clinics

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

FAQs from CCSVI clinics

Postby Cece » Tue Mar 20, 2012 6:31 pm

Many of the different clinics offering CCSVI treatment have websites with FAQs on them about CCSVI and the procedure. It might be useful to have a thread with the different FAQs in it?

Here's Rhode Island Vascular Institute's FAQs on CCSVI:
www.rivascularinstitute.com/faq/faq_ccsvi.html
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Re: FAQs from CCSVI clinics

Postby NHE » Wed Mar 21, 2012 3:53 am

From Dr. Sclafani

Screening / Definitive Diagnosis / Treatment / Results
http://ccsvicare.com/diagnosis-and-treatment/

Common Terminology
http://ccsvicare.com/faq/common-terminology/

Diagnosis and Treatment
http://ccsvicare.com/faq/diagnosis-treatment/

American Access Care
http://ccsvicare.com/american-access-care/
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FAQs For CCSVI clinics

Postby MarkW » Wed Mar 21, 2012 3:52 pm

Hello Cece,
I would help with an FAQs for CCSVI clinics. Key questions to ask before you select a clinic.......
Let's think about the Qs to ask and the answers.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: FAQs from CCSVI clinics

Postby Cece » Wed Mar 21, 2012 5:06 pm

That's an interesting twist, Mark. I was just thinking to list the links to the various clinics' FAQ sheets. The one by Rhode Island was reminiscent of Dr. Sclafani's very first posts, two years ago, with the details of catheters and veins and how the procedure is technically done.
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Selecting a CCSVI clinic

Postby MarkW » Thu Mar 22, 2012 2:09 pm

Hi Cece,
These clinics are commercial organisations and pose FAQs they can answer and offer the service indicated. Eg MRV is a great tool in the hands of Prof Haacke but I have seen no evidence that it is as useful in other hands. Plus it is expensive. So why choose it if you are self paying ?
My thought is a list of questions for pwMS about clinics, so they can search FAQs from a position of knowledge. I think there are many clinics offering a CCSVI procedure who use too agressive techniques and cause damage, which is very difficult to repair. Cheer has posted about not tearing vein valves but some doctors still do it. This worries me.
Dr S says his techniques are completely different from three years ago so the FAQs should be different.
Kind regards,
Mark
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: FAQs from CCSVI clinics

Postby Cece » Thu Mar 22, 2012 2:16 pm

I like your idea, MarkW.
Some things that come to mind are anticoagulation, use of intravascular ultrasound, number of ccsvi procedures performed, which veins are investigated, what pre-imaging is used, how often the upper jugular is found to be in need of treatment, and that is just a start.
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FAQs to CCSVI clinics by pwMS

Postby MarkW » Tue Mar 27, 2012 7:18 am

Hello Cece,
I agree on the type of FAQs. Now for the difficult part - structuring the thread !!
Thinking caps on.............
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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