Sometimes I have trouble keeping straight who said things onscreen, but someone in this thread suggested that Mark W was getting things backward by suggesting that there should be no treatment till a cause for the syndrome was understood.
Many times I have thought that CCSVI reminded me of Wolff-Parkinson-White syndrome, which I was diagnosed with in 2000 and received radiofrequency catheter ablation treatment for (not that different from the liberation procedure).
Many of the things people have said to suggest that CCSVI could not exist could also be said about WPW:
* Many "normal" people have the defect but can remain asymptomatic for years; no one knows what triggers symptoms. An individual's experience can vary from no symptoms to mild symptoms to being completely incapacitated and having it be potentially life-threatening.
* It is considered a congenital defect, with a higher likelihood if a family member has it, but the actual cause is not known.
* Some people have it but it doesn't show up on conventional tests. A person might not know they had it till they started having symptoms (worst case scenario, till discovered at autopsy).
* Some people need more than one ablation for successful treatment.
And on and on . . .
Not very many years ago, electrophysiologists started using radiofrequency ablation to address WPW syndrome. If they waited till they thoroughly understood WPW syndrome before using ablation to treat it, there'd be a lot more dead people out there.
I myself had two ablations, two years apart. The difference between the procedures was HUGE because of the learning and advances that had taken place in those two years. But they still don't know the cause.
At any rate, there is so much we don't know about every area of medicine, but it is so exciting to be in the middle of anything that could help in this devastating disease. We're here because someone we care about is affected by multiple sclerosis.
I think my previous experience with WPW makes me view it in a different light and makes me view many of the objections differently. And it certainly makes me think that we don't necessarily need to understand the myriad causes of a syndrome before we treat it -- I am very glad my cardiologists didn't wait.
What this boils down to is that I am thinking in terms of results before I obsess over cause. Is there a meaningful effect on symptoms? Is there an effect on disability? On progression? That's what makes the difference, more than anything else, to me and my children.
Cause is important, of course, but disability is what we live with.
For the second time in a thread today, I am expressing my excitement that Dr. Sclafani's arrangement will offer real data on exactly this type of information. Whatever the results turn out to be, they will be collected in a database with assessments and surveys.
Data -- I love meaningful data!