Chronic cerebro-spinal venous insufficiency (CCSVI)

Many studies have linked CCSVI and MS. Has anyone been tested for this? If so, what test(s) was used to determine this? Was angioplasty or stenting done to "widen" blood vessels?

Thanks for your help!

[ampky]

For those who would like to read about the relationship, here is just one of many links:http://msvascularsymptoms.com/?p=447/

[Lulu54]

Hi Ampky,

We have discussed CCSVI and actually have a member, Shoshin, who was seen by Dr Dake at Stanford and had a procedure done, with results that are still being considered (according to Sho!). She had angioplasty in the jugulars but no stenting.

There are several studies now being done to look into the relationship but none have been completed yet.  The verdict is still out as to what the connection is between this deficiency in blood flow and MS, if any.  

There are many questions yet to be answered and I hope that will happen sooner rather than later.  The number of "liberation" procedures being done continues to grow, but most are being done at a tremendous monetary cost to the patient in places such as Costa Rico, Bolivia and China.  

Of primary concern is understanding how much of the improvement patients are reporting is due to the placebo effect and how much is measurable change. I understand that MS is a disease where patients are highly influenced by the placebo effect, and that number has been quoted as high as 60% in some controlled clinical studies.

I say even if it is a placebo, if it makes you feel better and improves functioning then it has been positive.  However, I have great concerns that people who are already financially stretched by the costs associated with living with MS, are putting out large sums of money to have this treatment.  I have read that the cost can be anywhere from $10-40,000 US dollars, by the time you add in travel costs.  

There are studies being done in Buffalo and the first US goverment approved clinical trials have been recently posted, looking for subjects to volunteer.  If you want to read about those and find out how to volunteer, you can find them at clinicaltrials.gov.  Once there, search for CCSVI.

be well,
Lulu

[ampky]

Thanks for the info Lulu!!

[Lulu54]

One other note - there is a great roar from the MS community about this being a conspiracy from the drug manufacturers to keep making $$$$$ on their drugs rather than finding a cure.  

Even Dr. Zamboni, who developed this theory, is not ready to call this a cure.  He did this for his wife who how MS. She is still on a DMD, a couple years after having her lliberation treatment done.  His advice is to not stop the treatment we might be on now.