Cece wrote:I don't know, I think the availability for treatment at the stand-alone clinics is exploding at the moment.
Where are they? I can't find any here in Michigan.
Cece wrote:The IRBs are there to protect the patients during research.
Any chance they are out to protect the interests of the drug companies?
Cece wrote:CCSVI does need to be researched, we are actually less protected by going for treatment at stand-alone clinics that might be out for a buck
Aren't the neuros out for a buck? Aren't the drug companies out for a buck?
Cece wrote:...and also with getting this treatment that does not even begin to have its best practices worked out.
I agree that the best practices have not been worked out yet. But how long do we want to wait for that? The Albany study won't be done for two years. How many of us will die during that time? How much worse off will the rest of us be in two years? Even if Liberation is successful in stopping the progress of the disease, will it be able to reverse the additional damage that will occur in two years?
I think we all acknowledge that there is risk in getting Liberation before all the studies are done, but there is also risk in not getting Liberated ASAP. All of the Liberation success stories (as well as the failures) have occurred with current state of the art practices. The decision to take the chance on Liberation now should be up to the patient. But if the IRB boards block the procedure then it's up to them and not the patient. That forces patients to travel long distances to get Liberation. And that increases the cost, the discomfort of traveling and the problem of what to do if follow up visits are required.
I think it's a decision that each person needs to make for himself, based on his own situation and an understanding of the potential benefits and risks.