If you have received a CCSVI diagnosis....

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

Postby CureOrBust » Sun Jan 10, 2010 5:17 am

simone wrote:I thought an MRV was the first step then doppler . Still new to this.
If anything, the doppler is the first, as it primarily identifies that there IS a problem. The MRV can be used for this also, but it excels further at identifying the actual location of a problem. Doppler is more limited when it comes to areas behind bone (such as your skull) or seeing through air filled cavities (such as your lungs)
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Postby mrsilkykat » Sun Jan 10, 2010 1:26 pm

Re: Cure Or Bust's post: I'm surprised to hear that doppler is the first test to have. There seems to be a certain amount of confusion and no real clear approach to the testing we should get.

It would be extremely valuable if we can get discussion and agreement going here as to the procedures and protocols that should be followed to get reliable testing and readings. It feels to me that we are all over the place on this.

If I am going to pay upward of $3,000+ just to get an MRV where I live, then the procedures should be uniform so that I know I am asking for the best I can expect to get. It doesn't further our cause to be tossing money in a scattershot fashion.

We have a good solid cause in all the CCSVI research. This is a tremendous grass roots effort that is continuing to generate interest worldwide. We all want to participate. We all want to take action now. I think our action needs to be focused to better serve CCSVI's future.

Can we establish that doppler with Zamboni's or Simka's protocol is the first proper step or is MRV the first step. If I remember correctly, Dake switched from doppler to MRV because he could not use Zamboni's protocol without the same type of machine.

As per Simone's post, having a list of willing IRs and their locations would be another step to furthering accurate and comparable results. We need docs that are willing to learn the protocols and participate in the findings. Otherwise, it seems to me, we could end up with potentially lots of false negatives, unverifiable results and wasted money.

Questions:

1. Doppler as first step: What kind of machine is needed? Whose protocol?

2. MRV as first step: Any protocol that should be followed?

3. Do we need both doppler & MRV?

4. Is venography third step? Should venography be performed by the surgeon just prior to angio or stents?

5. List of willing IR's and locations

6. How can our data make a valuable contribution to further CCSVI?


This makes sense to me. What about you.

Feedback?
Kat
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Re: comment on Dr Franceschi advising IBT to be used

Postby AndrewKFletcher » Mon Mar 15, 2010 6:26 am

jean-la-grenouille wrote:I agree with the former threads. The venous problem isnt "a simple narrowing that can be enlarged", the venous problem is wide (especially in progressives MS) and presently difficult to solve.

I'm french and can easily speak to Dr Franceschi. He is very careful (that's why he didn't send me to another Dr to be operated "as soon as possible"). I try inclined bed therapy (as he advised me to do), look for any improvement, then, something could be done.

We have to be patient and go on promoting CCSVI, because it is the most important discovery regarding MS we have ever seen.

Jean


Have you kept up with Inclined bed therapy and if so can you provide us with an update on your progress?
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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