I think we need to be upfront about the benefits people with PPMS can expect. It sounded like Dr. S. was honest about better energy, warmer extremities, etc....but this couple seemed to be hoping (praying and paying) for a miracle. That's very hard to see...and I'm afraid it does the science no good. It also gives naysayers more amunition. Dr. Zamboni was clear in his very first study that people with PPMS who had severe mobility issues had quality of life improvements, but no major changes in mobility. People with PPMS need to know this, reporters need to know this, internet chat rooms need to know this. It's heart-breaking...
Not being "dismissive and argumentative", but I have heard of other doctors who are no longer treating PPMS if the patient had a previous procedure and no benefit. This gentleman had two prior treatments. And he went into serious debt to travel to New York.
Mr Henderson was not duped into this procedure. He understood the likelihood of grand outcomes was not great. He made his choices on his own, with no promises. He had his first two procedures early in the days of treatment. He had fleeting improvements and wanted another person to make a second effort. He was not a simple vulnerable man who was taken to the cleaners.
There are some proceduralists who say that if you have had a prior treatment and results are fleeting, then its over for you. I disagree. I think that many treatments are really suboptimal, abnormalities are commonly undertreated, underdiagnosed and when results fade, they are told that it isnt going to work for them. And where is the data for that? In many cases that may be true, but not in all. Also we need to keep in mind that treatment success may require multiple angioplasties and even stents before we can say that there is no hope.
What needs to be emphasized is that many initial treatments in 2010 and 2011 were often limited, done by many of us without any experience with the pathology of CCSVI. It turned out to be quite different from what we imaged. Advising patients that they do not have any further chance with CCSVI treatment is cruel. Abandoning hope without a second look is absurd. Those that advise it may indeed be presumptuous that their treatments were the optimized treatment. I know that my treatment plan now is greatly different from when i started and continues to modify
I think also that the labeling patients as PPMS, SPMS RRMS, and determining their likelihood of improvement is just not proven. These acronyms do not provide a 100% correlate with CCSVI treatment outcomes. The most substantive durable treatment success i have ever had was in someone who was SPMS with an EDSS of 6.0. As much as I would like to peg outcomes to acronyms, it just ain't the case. Let's be clear, severe paralysis with severe spasticity and clonus isnt going to end up with the miracle result very often, if at all. But such patients can have profound quality of life improvements nonetheless and the value of those benefits cannot and should not be judged by others.